Hello from Europe 2 :) [Archive] - Wegener's Granulomatosis Disease GPA Support Forum

Wegetarian

08-25-2013, 10:14 AM

For some strange reason the forum is acting up on me. The first thread I made here could only be seen by me. The second thread worked for a while, but now it opens up empty for me. If I log out or use a browser where I'm not logged in I can see it just fine but of course I can't reply in the thread since I'm not logged in :confused1:

So I'll create a third thread... Mainly since there were some discussion in a few other threads and I didn't want to hijack them since it wasn't relevant to those threads. And also because I liked having my own thread :tongue1:

I see no reason (but I haven't read everything you've posted) why the docs are building mtx up in you...it is imperative (in my and Mayo's collective mind) that you and the docs are aggressive with this disease as it doesn't let up if you don't keep 'feeding it' drugs. A build up is simply causing you problems that you don't need to face...they need to get to the dose they want you on to keep the WG off your back...or maybe they don't know or believe that protocol works...hmmmm...best of luck.

Don't know really. I mean I got curious about what you posted. From what I discussed with the doc it was to keep the side effects to a minimum while upping the dose. Wasn't too worried about that, it felt a lot more silly when they sent me home from the hospital and I heard that the treatments should start immediately but they said it will take a few weeks before I get a note from the rheymu clinic for a doctors appointment. I mean what sense is it to wait for weeks just popping cortison since taking MTX or cyclos doesn't seem like such rocket science after I've been diagnosed... They did take me back though once it was clear I wasn't getting any quick appointment to the rheumy clinic.

My guess is that they follow the EULAR guidelines. Not really sure though, all I know is my doc has consulted specialists so I do trust they know what they are doing. I did some googling after your post and some studies do recommend starting from lower doses and going up from there. Haven't seen values as low as 5mg though (which I started with). But it might be due to the pill size too, I mean I have 10mg pills which I could easily put in half.

Here are some quotes from fairly interesting articles I found on the subject:

http://www.medscape.org/viewarticle/712891_5

For years, MTX use has been suggested as, and tested in several open-label studies,[56-62] a potential induction agent, combined with CS, for WG patients with limited, localized and nonlife-threatening forms. MTX was usually given orally but its weekly dose varied greatly between studies, with starting doses ranging from 7.5 mg/week

EULAR recommendations for the management of primary small and medium vessel vasculitis -- Mukhtyar et al. 68 (3): 310 -- Annals of the Rheumatic Diseases (http://ard.bmj.com/content/68/3/310.full#ref-33)

Methotrexate (20–25 mg/week, oral or parenteral) can be used as an alternative to cyclophosphamide in patients with less severe disease and in whom renal function is normal.13 (http://ard.bmj.com/content/68/3/310.full#ref-13)33 (http://ard.bmj.com/content/68/3/310.full#ref-33)36 (http://ard.bmj.com/content/68/3/310.full#ref-36)53 (http://ard.bmj.com/content/68/3/310.full#ref-53)–58 (http://ard.bmj.com/content/68/3/310.full#ref-58) It should be commenced at a dose of 15 mg/week and escalated to 20–25 mg/week over the next 1–2 months, if tolerated. In a randomised controlled trial, it has been shown to be equal to cyclophosphamide in its capacity to induce remission

Initial immunosuppressive therapy in granulomatosis with polyangiitis (Wegener's) and microscopic polyangiitis (http://www.uptodate.com/contents/initial-immunosuppressive-therapy-in-granulomatosis-with-polyangiitis-wegeners-and-microscopic-polyangiitis)

A suggested regimen is oral methotrexate (http://www.uptodate.com/contents/methotrexate-drug-information?source=see_link) at an initial dose of 0.3 mg/kg (but not exceeding 15 mg) once per week, with increases of 2.5 mg each week to a maximum dose of 25 mg once per week. Since methotrexate is a structural analogue of folic acid (http://www.uptodate.com/contents/folic-acid-drug-information?source=see_link) that can competitively inhibit the binding of dihydrofolic acid (FH2) to the enzyme dihydrofolate reductase (DHFR), folic acid (1 to 2 mg/day) or folinic acid (2.5 to 5 mg per week, 24 hours after methotrexate) should be given concurrently to reduce potential toxicity.

So I guess in summary it seems my starting dose was really small, but its upped with 5mg/week so I'll reach the full 25mg dose in 5 weeks. Next week I'll be taking 15mg assuming my bloodwork is fine and I don't have any more adverse side effects. As I mentioned in the other thread I almost fainted on the way from my bathroom to my bed, and the nurse told me it could be a side effect of MTX :( My condition was really light from the beginning with Weg to my knowledge only affecting my nose, and I generally feel great besides the fatigue and the nasty feeling I sometimes get in my lungs.

Wegetarian

08-26-2013, 01:08 AM

Figured I'd link my old thread here too in case someone is curious, as it has some more info on how I was diagnosed and I won't be updating it as I can't open it if I'm logged in.

http://www.wegeners-granulomatosis.com/forum/new-member-introductions/3253-hello-europe.html

BTW, there are so many Aussies here so I have to ask why Macademia nuts are so darn expensive? They seem to be mainly produced over there but cost like 50 euros per kilo here. I can only find them cheaply from Lidl but they carry them maybe twice a year or so (roasted with honey) Just ordered some plain nuts from Amazon since they were much cheaper than in my supermarket, but just feels nuts to order nuts overseas.

NikkiNicole

08-26-2013, 05:57 AM

I also am on a steadily increasing dose of MTX because I do not have renal involvement. My old rheumy believed the only drug that could treat Weg's was CTX and refused to give it because my kidneys were fine. He also believed you couldn't have Weg's without having the whole she-bang. Well, he was wrong.
I feel OK with my meds. The day I take it I'm pretty blah but, for the most part there have been no adverse side effects. My blood work all looked good at 2 weeks, except I did notice an increase in my creatinine. It was still within range but just barely under the high end of the range. I'm sure it was just a random spike. I have blood work done again on Friday so I'll be able to see if that number returned back where it usually hangs out.

Wegetarian

08-30-2013, 04:13 AM

Talked to the doc today. Got some good news :) The blood tests from yesterday were all great, so I'll continue upping the MTX today to 15mg. She also said I can quit the antibiotics this week. Was a bit surprised by it actually, at the hospital they said I might be on them for life and last I talked to the doc I thought she said we'd try to cut them off after two months (which would still be over a month in the future). I even have three boxes in my cupboard since I thought I was going to be on them for still over a month. Well anyway, its my seventh consecutive antibiotics box (counting the IV at the hospital too) so I'm thrilled to stop eating them. Being cheap I was also annoyed at the probiotics my other doc recommended to me, as they would cost about 70 euros / month if I took them according to the prescription. Was going to switch to some cheaper brand, but hopefully I won't need any next week.

Was surprised that the doctor didn't get my message about almost fainting last friday night. The nurse I talked with said she'd forward the message to her, but I guess it got lost. She was a bit worried about it but since it was an isolated incident we let it pass.

Generally I'm feeling real fine too - we cut down the pred to 60mg the last time I saw the doc and I don't get the coughs as often. I think the squeezing pain in my chest doesn't occur too often either. Today I had some, but I kind of expected it since I only got about 4 hours sleep and I always feel worse when I haven't rested enough. Luckily I had nothing scheduled for today, so could just chill for the most of the day. The kids can drive me nuts pretty quick. I think its due to the stress when they are yelling and fighting, it seems to affect me more now than before and can tire me quite quickly.

I ordered the Neilmed squeeze bottle and battery operated thingy, didn't see any available locally and it was quite cheap to order them online from England so why not... Should have them early next week I suppose. Heh, in the morning I was using my neti can and was really short on time. I knew I had something in my nose and it was a bit painful to the touch, but as in a real hurry so knew I wouldn't have time to refill. Just poured everything in one nostril, but nothing would come out even when I blew my nose. So I tried one last time to blow my nose and out it came. Hallelujah! What a feeling. Well, maybe the squeezy thingy will be more efficient. It just feels that one fill of the neti can is never enough these days.

Also, my doc said its OK to just use regular tap water. Our water should be really clean, and I'm quite relieved I won't need to be hunting for some purified water or spending over 50 euros a month on bottled water at the pharmacy. I know I'll get flak from Phil, but I'll just have to live with that ;) If a parasite does eat my brain you can tell me that you told me so. :tongue1: My doc is a specialist in nose/ear/throat issues so she should know.

Decided to join this support group that meets once a month, its not for Wegs but for people with rare Rheumy cases, was told there are always a few Wegs there so might be interesting. The organizer I talked with was very friendly, and recommended me this kind of retreat for people who suffer from vasculites. It sounded extrememly interesting, theere will be rheumy docs, dietary specialists and other experts and we'll get individual plans too. The only thing is that it lasts for 12 days! Its after my sick leave so not only will I have to ask for almost two weeks of time off I'll even need to be away from my family as its too far to drive back and forth daily. Dunno... My spouse said I should apply and she'll manage. My company is really cool about everything and have been extremely surprised so I'd be shocked if they said no. The last day for applying was three weeks ago though, so that might certainly be an issue. I'll call them tomorrow and see if its still possible. I mean the doc who treats me is real great and listens to me, but Wegs isn't in any way her speciality but she does consult the specialists. So if I go there I'd get to see a bunch of experts on vasculites. The person who recommended me the course also said she learned a ton there. So it should be an extremely informative trip. If I go I guess I should write a trip report to you guys too.

drz

08-30-2013, 05:03 AM

You can microwave or heat the water to boiling and that would kill any parasites in it which is very unlikely anyway. There are carbon filters that can also take out the chlorine but if you boil it the day before you use it the chlorine will be gone anyway. I usually just use hot tap water after letting it run a minute or so but don't recommend it so it is another case of do as I say not as i do.

pberggren1

08-30-2013, 06:47 AM

Well Wegetarian....here it comes.....lol.

I get bottled RO water in the big 20 liter jugs for 2 dollars at my hometown. I'm sure you can find the same thing. If not, just please boil your water for at least 10 min and store it carefully. You could even store it pre-mixed with the salt and baking soda.

Wegetarian

08-30-2013, 07:59 AM

Nope, I'm gonna use lukewarm water straight from the tap. :flapper:

Just like the doctor ordered :D

pberggren1

08-30-2013, 10:23 AM

How dare you stick your tongue out at me......:predrage:......I am Batman!!!!!:thumbsup:

mishb

09-01-2013, 12:09 AM

I think Batman just got knocked out of you ....... and you are now mild mannered Bruce Wayne/Phil Berggren :lol:
Consider yourself told.

BTW, there are so many Aussies here so I have to ask why Macademia nuts are so darn expensive? They seem to be mainly produced over there but cost like 50 euros per kilo here. I can only find them cheaply from Lidl but they carry them maybe twice a year or so (roasted with honey) Just ordered some plain nuts from Amazon since they were much cheaper than in my supermarket, but just feels nuts to order nuts overseas.

No idea - I can't stand them.
My ex-boss used to grow them - had about 100 trees and it took about 10 years for any of them to start producing edible nuts.
It then took ages for him to pick them and they then had to be sent off somewhere else for roasting.
I guess, 10 years without an income source, from these trees, could be the reason why they are expensive.

Wegetarian

09-09-2013, 12:31 AM

Oh what luck! I was just thinking yesterday that I should have a profile picture so that it would be easier to spot my own posts in my threads and would be nice in general. So my daughter decided to draw a picture of me on my phone. So now not only do I have an avatar but you'll know how I look too! Two birds with one stone :D

1925

Don't really have any major updates about myself. I got the neilmed cans, and have been testing the batter powered one (couldn't resist). It looks like a giant toothbrush and does a weird swirl in the nose when you use it. It does feel more effective than my trusty old Neti though. Unfortunately the water reservoir is just as small. The few days I've been using it is probably not enough to make a thorough comparison, but I'd say that one fill of the powered Neilmed is more likely to be enough than one fill of the Neti - so in that way its a bit better. I think I'd also recommend it to a beginner instead of the Neti since it might be easier to use. With several years of Neti can usage I don't think its a concern for me, and its also easier for me to know when I've used about half the water in the Neti - the Neilmed goes empty pretty quick. I kind of wish it would beep or inform me in some way that I've used half the water in case I want to switch nostrils. I'll probably test the squeeze thingy in a day or so.

Been sleeping a lot worse. I wake up at 1am almost every night, generally I guess I sleep three hours before waking up and then I'm up for a few hours. It sucks since I have a hard time getting 7 hours sleep if I'm up at night. Yesterday I had a few drinks with my neighbor and couldn't get sleep until 1am, then woke up at 4 am and didn't get sleep until my kids woke me up at 7am. I let my spouse sleep until 9 am and then got a bit over an hour more sleep. I should start resting now I guess... I think its a mixed blessing actually, since I think it might be a symptom of me getting stronger and not needing as much sleep due to my very sedentary lifestyle. I did enjoy reading drz's post about how important it would be to learn to estimate how much energy we have, and take it into account - I think he is so correct. I find there is often a surprising amount of wisdom in his posts, don't you think so? There was also recommendations here on doing some exercise, and I think I should walk more. My doctor forbid me to go to the gym or go swimming, which is sad since that's what I usually chose to do. But some walks would certainly do me good. Unfortunately both my kids have been down with the sniffles, and while I don't feel sick I've been feeling quite exhausted - perhaps due to the few hours of sleep. Today we also organised a joint birthday party for my son and just a short walk to the store made me feel real tired. I notice my body temperature is up, 36.9c so not a fever but higher than usual so I think I'll just try to chill for the rest of the day and hopefully get a good nights sleep. Tomorrow I'll have an exercise class similar to yoga, I hope I'll feel good enough to participate since I had to skip it last week due to lack of sleep / tiredness.

(Ha - at this point I accidentaly navigated away from the edit mode but was able to restore my draft :thumbsup:)

mishb

09-09-2013, 11:20 PM

Yay, you did it :thumbsup:

Yay, for the avatar - however, I was waiting for it to be a little blue dot :razz:

I agree, drz is a man of great wisdom........he is not Batman like Phil, but sorry Phil, he is more than Batman - drz is almighty man .......almighty with the sword/pen and almighty with the knowledge/wisdom. :thumbup:

Good luck with the different nose challenges - I use the squeezy bottle and just a saline spray.

I can't comment about the sleep thing - I never get to sleep before 1.00am and I am up again at 6.00am for work. However, I continually get up to have a drink of water throughout the night. The weekends are when I sleep the days away.
I hope the sleeping gets better.

Have a great day

drz

09-10-2013, 02:59 AM

[QUOTE=mishb;72665
I can't comment about the sleep thing - I never get to sleep before 1.00am and I am up again at 6.00am for work. However, I continually get up to have a drink of water throughout the night. The weekends are when I sleep the days away.
I hope the sleeping gets better.

Have a great day[/QUOTE]

How do you function on five hours sleep? Do you nap during day?

Alysia

09-10-2013, 03:44 AM

Hi Wegetarian,
cong for your new avatar. you look great :biggrin1:
and sure, drz allways adds here a lot of profound wisdom and extensive knowledge.
thank you, drz, for sharing :love:

Fran

09-10-2013, 06:57 PM

:biggrin1:
and sure, drz allways adds here a lot of profound wisdom and extensive knowledge.
thank you, drz, for sharing :love:

Also, thanks drz for the brill birdwatching links which I enjoy so much ! :love:

Fran

mishb

09-10-2013, 10:39 PM

How do you function on five hours sleep? Do you nap during day?

No daytime napping I'm afraid - It's just something I am used too.

When I get home from work I basically eat dinner and then do nothing ........well I read and comment on this forum and I do facebook.
I get to bed by 12.30am. The later I go to bed the quicker I can drop off to sleep.
I've tried going to bed early, say 10.00pm but my brain just doesn't stop talking :razz:

On the weekends I get more than ten hours each day........and sometimes, not very often, I take a day off work for an extra sleep in.

Wegetarian

09-13-2013, 11:53 PM

Oh happy days! Talked with the doc this morning, I'm immediately allowed to cut down my pred from 60->40mg. Last I visited her in mid-august we discussed that we'd do that after a month - so I asked her about it and it turned out I could have done it at the start of Sept (I started taking pred at the hospital at the end of July). Just turns out no-one told me to cut down the pred :razz:. Oh well, glad I asked... My blood was fine, those white cells were down which I understood was a good thing, they weren't down so much that I'd get sick easier but were just lowered to a better level.

I talked with another Weg patient at another support group and she was recommended to take a flu shot (we get it for free since we are at risk) and a shot called Prevenar against pneumonia (note its not against PCP pneumonia). Prevnar should be quite expensive though, 80 euro or something but guess I'll take it if its recommended. My doc said she'd get back to me about those as she'd check with the infectious diseases doc (or whatever its called in English).

Turns out I could go swimming, but once I'm in a better physical shape as I'm still quite weak. That's excellent news, since I wasn't sure how long I'd be forbidden to do any fun stuff. Especially if I get to go to the spa for two weeks next month it would be a bit annoying to not go near the pool. But more about that later, should hear about it in a few days.

The doc also asked if I've heard anything from the shrink, and when I said no she must have done something about it because they called me today. So I have an appointment in a week and a half. I'm feeling much better mentally though, still get agitated easier but I doubt anyone else than my spouse notices since I'm quite easy going anyway. Maybe cutting down the pred will help with that too, at least the mood swings and hyperactive feeling got a lot better last time I cut down the dosage from 80mg. I haven't been sleeping well, usually wake up about three hours after I've gone to bed and then stay awake for a few hours (and eat a big snack). So hopefully somehting might be done about that too. Although I don't really want to take any sleeping pills. I've been taking those melatonin pills earlier, but there were some discussion about that they might not be suitable for rheumies. My doc told me it should be fine to take them as they haven't any side effects listed with the meds I'm taking now. Dunno, guess I'll take them when needed since a good nights sleep is just so important when tired.

Lastly I got a call from my company's insurance company. They had been sceptical about my bills since there were some problems with my papers, i.e. they weren't sent in time or someting. Turns out they were cool and said they will pay the invoices I sent them (about 300-500 euro's in hospital and med charges depending on what they cover) and they also told me that they'd prefer if I'd switch my treatments to our private doctor and they would cover the expenses and meds. I almost fell of my chair - I was completely expecting them to just deny everything and then me having to try to get their decissions overturned and the last thing I'd need right now is an argument with an insurance company since I've been told to avoid stress. Just was so surprised how super nice she was. I mean she told me that if I don't switch treatments to the private clinic, then I should re-new the prescriptions there so I'd get the money through them - and if my doctor absolutely refuses to have me switched over to the private clinic they could likely do an exception for me and cover the meds even though it wasn't prescribed by a doc appointed to me. Lastly they said it should be possible to get a doctor outside our clinic to treat me, if there isn't any suitable doc available - but in that case I need to contact them to work it out beforehand. Amazing... Really didn't expect that kind of service. Already asked around if they know any good doctors specializing in Vasculites and I'll try to get a time for our company doc to see what he thinks and suggests, although I'd rather have the names of a few great docs in advance in case I can pick :D I really doubt the public hospital would mind if I switched, the staff seem so overworked there.

pberggren1

09-14-2013, 07:07 AM

Nice to hear some good news....:thumbsup:

marylz

09-14-2013, 02:04 PM

WOW!!! You did get lots of good news!

Wegetarian

09-15-2013, 05:16 PM

What a nice day yesterday. Wen't to my father-in-law's cabin for his and his wife's birthday party. It was 1.5 hours drive away so we were a bit worried if the trip might be too much for me. At times like that its really annoying that my spouse doesn't have a drivers license. I mean I could take a small nap on both ways so it would be no issue then. We were planning on leaving early (but I know that never happens).

The weather was perfect, just like summer. The kids really enjoyed being on the beach.

I'm a big fan of cigars, but haven't smoked one since May as I was told not to use nicotine after my surgery. Then my doc told me not to smoke anything or use nicotine due to Weg - so let's not tell anyone! Not my favorite cigar, I have some nicer ones in my humidor but wasn't even sure if I had time to smoke one or how I'd feel about it so didn't want to waste a perfect cigar. Well, it tasted great anyway :D Very relaxing day in the archipelago.

http://oi41.tinypic.com/ivy7fs.jpg

I had a really nice chat with my father-in-law who is a retired doctor and very knowledgeable about our public health care as he has worked there for his entire life I guess, and in a quite high position. He gave me some good advice about getting the best care I can, and wasn't really sure if I should switch my treatment to the private sector. I'm gonna take his advice. I mean many persons have recommended me one doc in particular who has a private practise. Its fairly pricey, I guess about €100 for a visit. I'm going to do my best to see if I could get it into my insurance, but its unlikely since he works at a different clinic. If not then I need to think whether or not I should even try to switch to the private sector. I think I'll need to discuss it a bit more with the insurance company too. I mean if I can keep my treatment at the public health care, but when needed take appointments from our private clinic it could also work well - so that I could get quick appointments to specialists when needed.

Too bad they also had one of my favorite cognagcs for dessert, but I didn't want to drink anything as I get tired enough without alcohol. Took two short rests and felt fine, but was quite tired in the evening when we left after 8pm.

One thing I've noticed is that my eyesight seems to get worse in the evenings. When watching TV I have difficulties in seeing small text. I thought I might have put some settings wrong on the TV, but double checked them and everything was correct. I haven't noticed any issues during day time - just in the evenings. Its worrying me as I've always had really good eyes.

mishb

09-15-2013, 06:05 PM

Wow, that looks beautiful - I'm not sure about the cigar in the picture :flapper:

I was first with a private ENT and then he referred me to the Public hospital because they are better equipment and have all specialties/specialists, readily available.

Wegetarian

09-21-2013, 03:51 AM

A quick update, went to the optician and had my eyes measured. My eye pressure was a bit elevated (21 if I remember correctly). She measured my eyes and with the correct lens setting I could see great. So guess I'll just need a pair of glasses. Have to say I'm relieved it wasn't some other damage to my eyes. Have an appointment with an ophthalmologist next week.

Also found out I get to go to a two week course for vasculites which is organized at a spa :D Rheumy, dietician, psycho-something and some excercise-dude will be present to give us loads of info. Pretty cool :thumbsup: Too bad its a long time to be away from my family. Already checked they have wifi ;)

drz

09-21-2013, 03:04 PM

Barbara N

09-21-2013, 04:11 PM

Wegetarian

09-21-2013, 06:52 PM

If there are other Weggies there too, it sounds like a good deal for you all. Never heard of such a program before so tell us more details about it.

Yes, there will be other weggies. There is a local FB group and I know at least one is coming. I think they organise it for 10 people and last year it wasn't even full, looks like its full this time. Figured I'd take notes there and keep you guys updated, hopefully not anything too difficult to translate.

Its organised in a resort owned by the Rheumy union, but its the government health care system that approves which patients get accepted and pays the bills. They can also offer individual courses, but this sounded really great as it was aimed at vasculites. There were some other courses too, which were offered at different spa's - like for couples on how to react to a long term disease. Those were like 2-3 day courses I think. I never seen a 3-week course before, but then again I haven't been looking.

Translated from the course info page:

- aimed for vasculites who would benefit from an active group course
- participants should be working, or need support in remaining at work or for returning to work
- the course aims to support the individuals rehabiliate (wonder if there is a better word for that in English) and to offer more information so that people could better support themselves with the disease both at work and in their spare time
- to try and find a suitable regular exercise

About the experts:
- A rheumy lecture and Q&A related to the diseases.
- A nurses group to give out more info about the medicines
- Behavioral therapy for day-to-day stuff and support appliances (joint paints or similar I guess)
- Group session with a psychologist about living with the disease and to find long term motivation in dealing with the disease
- Group with a nutritional therapist to deal with osteoporosis and to build a healthy diet
- Group with a social worker to get information about benefits, workplace related stuff and spare time activities
- private sessions with a physiotherapist, and if needed with a behavioural therapists, psychologist, social worker, nutritional therapist or for a foot-specialist.

I hope its somewhat legible. Dunno how much they pack into a day, I mean its like about 12 days in October and then mon-fri in March next year. I assume they have a decent gym and they must have a swimming pool as its a spa. I hope I'll be allowed to work out, swimming should at least be OK for me. Figured I'd try to get into better shape, hopefully I can start before that too. They also have Wifi so I'll of course bring my laptop (or two ;)).

I have to say I'm impressed they organise that kind of courses, its held annually so I was very lucky that I got in and at this time when I'm quite early diagnosed since its the kind of information I've been looking for. Must be really expensive to organise something like that. They even said its the last time they organise the course in that form :( Dunno if that means it will be different next year or what they are planning.

drz

09-21-2013, 09:55 PM

I'm envious of such a program. It sounds great.

pberggren1

09-22-2013, 09:07 AM

WOW!!!

We have nothing like that in Canada. We would have to coordinate all that ourselves and even then many of that is not available.

Wegetarian

09-22-2013, 02:59 PM

Do you have some kind of rheumy unions that could be contacted and asked if they could have some kind of courses then? I do think 3 weeks is a bit of an overkill. I mean it must cost a ton to organise the course. The health care system even pays us to go, so when you take into account I'll miss three weeks of work it must be really expensive to have a course that long. I suppose the spa isn't really expensive though, as its owned by the rheumy union and the room prices on their pages seem affordable.

mishb

09-22-2013, 05:42 PM

Hi Wedgie,

Nothing like that in Australia either........and I've never heard of a Rheumy Union.

How many people are there within your "pale blue dot" that are diagnosed with a vasculitis type condition and WG in particular.
It certain is a very interesting way for people to learn about the condition and to meet others in the same boat.

Wegetarian

09-22-2013, 07:39 PM

Maybe you should start one then? I mean organisations like that get a lot of money from over here... So they can organise a lot of stuff... They even have a subsidised vacation to another child-friendly spa next year, and I figured I'd apply for that too as its very cheap room and board. We were there for two nights a few years ago and the kids loved it.

The rheumy place (not sure if union would be the correct term) said 108 people with Weg were registered with them. I guess not everyone will have joined though. Not sure about vasculites in general. I can let you know if I hear.

Barbara N

09-23-2013, 12:16 AM

We do have something like that in Spain in Burgos. It is a Spa with every medical facility available downstairs. Your family can come and it is 100% free to people who have WG or Vasculitis. You just have to find your way to Burgos. I have been looking for the paper about it because I tjhought I might sign my husband and myself up for a 7 day trial, you can even get speech therapy. I can't ask the doctor who gave me the information because I fired her and denounced her for misconduct toward a patient.. I have the brochure somewhere so I will find it.

pberggren1

09-23-2013, 08:06 AM

I should move to Europe and then we will all go to this Spa in Barbara's country......:thumbsup:

Wegetarian

09-24-2013, 05:37 AM

I should move to Europe and then we will all go to this Spa in Barbara's country......:thumbsup:

Hey! What's wrong with my spa? ;)

Yeah - I have to agree a vacation is Spain doesn't sound half bad at all. I wonder if its open to non-residents. I remember Gliders saying he goes to Spain for vacations at times.

Darn such a busy day today. First went to blood tests, went there 7am when they opened since I had to be fasting and couldn't get my morning coffee. Then went to the hospital to pick up all documents about me (need them for the specialist and for the retreat). I read them through and was surprised that they had tried to send me to a rheumy at least three times, but I was rejected each time. I haven't received a proper reason for it - just that they are busy. But this does surprise me, I'll certainly discuss it with the specialist once I see him.

Then I went to the psychotherapist, was a fairly interesting session. We mainly discussed my background and it seemed she felt more sorry for me than I do. Was nice to hear that she thought it was an excellent idea that I go out for lunches with friends, since I used to get a bit of a bad conscience by having fun during the day and then being exhausted when the kids come home. (Now I have more energy, so not really an issue). She also thought it was a good idea I see the specialist, and was surprised they didn't send me to one. For our next session we talked that we'd discuss how to talk about the disease to my children, as we haven't said almost anything and its certainly affecting our first-born. She also said my spouse would be welcome to join, as I had said it has been very rough for her with me being sick the entire summer.

After that I went to this really good Nepalese restaurant that we sometimes frequented when I was working nearby... yummy!

By the time I got home I was pretty beat, went to pick the kids and then for a nap. One hours sleep did wonders, as I had wondered if I should skip a support group meeting for people with rare Rheumy-diseases that was held in the evening. So I went there, and we were about 20 people of which 3 had Weg. There were a bunch of other vasculites too. I have fairly mixed feelings about it. The new members presented themselves, but one member in particular couldn't stop talking about her issues. There were some good general info, like about upcoming lectures about diets and how rheumy meds interact. Still felt like two thirds of the time was spent listening to someone telling how badly they were treated by a doc or how the health care system doesn't work for them. Dunno, maybe I should contact the organizers and ask if those could be discussed in smaller groups (at the end Wegs were put in one group etc) since it just doesn't feel like a good use of time. A few of the members were very nice, but they had the wrong vasculite :)

pberggren1

09-24-2013, 12:30 PM

Okay, to Norway it is as well.......lol

Wegetarian

09-26-2013, 08:33 PM

Last week I called the hospital to discuss my impaired vision, and the nurse told me to discontinue the meds until I have talked with my doc - and that she doesn't have time for a phone call until our reserved time today. Just had a talk with my doc, she had hoped that the nurse could have informed her about the talk but they did enter it into their system so she knew I had called. A bit annoying... I was there on Monday too to pick up some papers and asked again if she would have time earlier, but was told no.

So since she isn't a rheumy she will consult one and inform me next week if I should switch meds. I have an ophthalmologists appointment tomorrow, and she wanted me to send the results. I also asked if I should take a flu shot and a shot called Prevnar which prevents some kind of pneumonia and if my bone density and vitamin levels should be checked. She did think those were good questions and will ask the rheumy. Its great that there is so much info available to us, but its really frustrating to have to ask the doctor if I should have some tests taken. I think it would be their job to find out what needs to be done. Feels like the game broken telephone where I have to ask the questions to a rheumy through another doc. Anyway, she told me she will fax the info to the rheumy but won't be in the office tomorrow so I should know more on Tuesday.

She also told me to come to the hospital or call if my condition changes, I told her that I don't think they'll know about my issues and she agreed. I mean when I called them about the meds they did seem a bit confused.

On the bright side I've had a ton more energy lately and don't get as tired. Yesterday I walked 6km and helped sort out my parents computer trouble for a couple hours. I don't think I could have manged with that a couple weeks ago, but didn't even feel tired after that. I did sleep a nice nap a bit later though. Naps are awesome :)

My nose has been a bit more clogged lately, before I could usually do with just one rinse in the morning - now I feel I need to do it three times.

Anyway, I'm glad I got the appointment to a private ophthalmologist tomorrow so I should know more about that then. I also got an appointment to a private rheumy for Tuesday so I'll be able to talk to one for the first time. With any luck I could move my treatments to him and have the insurance foot the bill. Would be so nice to get out of this ridiculous situation at the public side. I don't really know why they didn't direct me to a rheumy. From the papers I got from the hospital I noticed that they had at least three times tried to send me to the rheumy hospital but were denied.

How many people are there within your "pale blue dot" that are diagnosed with a vasculitis type condition and WG in particular.

Michelle, I noticed these statistics in a magazine they send to people with rare rheumy diseases. Its not like an official lists of all diagnosed people, but the persons who have joined the Rheumy assosiations rare diseases mailing list and told about their diagnosis. I think they said something like 108 for Weg's when I talked with them on the phone. I would assume the vasculites row (second lowest) would be other vasculites than those listed. I didn't bother to translate it, as the names are fairly similar in English (and if not then I have no clue what they would be :))

http://content.screencast.com/users/Daniel_snagit/folders/Snagit/media/0b356e61-961c-4239-8cf2-81f79b7e315b/2013-09-26_12-29-23.png

Wegetarian

09-27-2013, 11:09 PM

The eye doc is sending me to a few more exams. They will messure my eys pressure morning, noon and night to see how much it differs and some kind of vision test. I guess its mainly to give some kind of baseline results, but also to check that I'm not developing glaucoma and that my optimal nerve isn't getting damaged.

I was told I could either get glasses or not, he meant that my vision is good enough that I can manage without glasses. He wasn't really sure if my vision would keep changing either.

Went to the opticial and ordered their cheapest glasses. I bet Alyssa is going to be annoyed that I chose the cheapest plastic frames instead of those high-end titanium frames I guess she recommended. Felt so so weird to try out glasses since I've never used them. They recommended that I'd get the harder surface and anti-glare coating, but being cheap I just got the most basic plastic lens. I'm amazed they can sell decent looking frames with custom made lenses for 29 euros. I'll get a decent pair once its more certain that my vision won't change. The metal frames they had for that price were fairly ugly, and I think I might use some very light ones for long time computer use.

Now I'm off to Ebay to search for some cool case to keep my glasses in.

Still feeling a more exhausted than on Wed and the week and a half before it. Maybe its because I've skipped the MTX twice, dunno.

mishb

09-27-2013, 11:19 PM

Michelle, I noticed these statistics in a magazine they send to people with rare rheumy diseases. Its not like an official lists of all diagnosed people, but the persons who have joined the Rheumy assosiations rare diseases mailing list and told about their diagnosis. I think they said something like 108 for Weg's when I talked with them on the phone. I would assume the vasculites row (second lowest) would be other vasculites than those listed. I didn't bother to translate it, as the names are fairly similar in English (and if not then I have no clue what they would be :))

http://content.screencast.com/users/Daniel_snagit/folders/Snagit/media/0b356e61-961c-4239-8cf2-81f79b7e315b/2013-09-26_12-29-23.png

Wow, that is an amazing list.
I wonder what those 24 people with Muut have (I tried to google it but will not share what I found :sad:)

We don't have any such lists like this in Australia - do we Andrew???:unsure:

Wegetarian

09-28-2013, 07:05 AM

Ah, sorry. "Muut" is others.

Wegetarian

10-03-2013, 05:54 AM

Went to a private rheumy today, what a relieving appointment. I asked around who would be the best rheumy that takes patients and I think three people mentioned him. He looked over my papers and told me not to worry, that the nose-ear-throat hospital would be the best place for my treatment as the weg has only affected my nose and they are the specialists. He also said they had chosen the meds well, and he thought the dosage and pred tapering was correct. He also answered all my questions about different spots I had etc (another side effect of pred). He told me my vision was due to pred, and it should improve once I'm taking much smaller doses. He also looked over my lab results and explained some of them to me and said they looked very good and only had one minor suggestion to include one test at some point. Since my CPR levels were very low he also figured that I should have no problem returning to work once my sick leave ends, and I should have more energy then.

Picked up my glasses today. It feels so strange to wear glasses, and looking around feels like I would be very drunk. Dunno why. Guess I need some practise with them :)

I guess I might have forgot to mention that I'm back on MTX. My doc had talked to a rheumy and another doc and they felt the vision issues were due to pred so they wanted me quickly back on MTX and lower my dosage. Cut down pred from 40mg -> 30 today.

mishb

10-03-2013, 10:56 PM

It's always a wonderful feeling to see or speak to someone who actually knows what they are talking about.
I'm glad you got to see such a person today.

I'm glad you are back on the MTX and hopefully this rheumy was correct in saying that your vision should start to improve.

Great report, Wedgie :thumbsup:

Wegetarian

10-03-2013, 11:07 PM

Yeah, I should have booked an appointment earlier, I mean it was so relieving since I've only seen my doc once since I got out of the hospital in early Aug and was wondering about some spots on my skin ( just acne courtesy of pred) etc.

It was also nice to hear that he thought MTX was safe to use for extended periods, he said some of his rheumy patients have been on it for over 10 years and even though its a cytostat its still safe and even administered to children.

Wegetarian

10-12-2013, 07:54 AM

Went to get my eye-pressure tested since it had been a bit high. They wanted to test them at 9am, 11.30am, 3pm and in addition to have this test about peripheral vision. My eye-pressure was a bit high, about 22/21. There was an area which I couldn't see with my left eye. So these tests I had done at a private hospital.

The next day I took the results with me to the public hospital since I had an appointment for a doc since there was a suspicion I might have glaucoma. Turns out my eye-pressure is fairly OK as I have a thick what-ever the layer is called on the eye, which means we could subtract a couple points from the eye-pressure.

I did have some double vision though, and this concerned the doc a bit and she talked with a specialist from the infections ward and they said they'll send me for an MRI for the eyes. I'll have it at the end of next week and suppose I'll get the results perhaps the following week.

Upon inspecting my eyes she also noticed I have cataracts. She figured that it might have been the issue why my eye-sight had become weaker, and we discussed that the use of pred will likely cause it to get worse. Possibly it will get better when I'm off the drugs - but likely I will need glasses or have surgery. Bummer though, since I really liked having good vision and the thought of my vision getting worse isn't too fun.

Although today the doc from the private hospital called with the results, and when I mentioned the cataracts he was of the opinion that if I have it its inconsequential as my vision was very good when tested with glasses. So dunno what to think, guess best not to waste any time worrying and just buy new glasses when needed.

gilders

10-12-2013, 08:38 AM

Losing any of your senses is very bad news. Having lost a lot of my hearing, I'd still rather that than losing sight.
The only positive I can think of is that sight seems to be something that can often have good results with surgery or glasses.

Hopefully the MRI will bring some positive news.

vdub

10-12-2013, 09:48 AM

Welcome to the forum!

I went and looked at your first post and didn't have any problems. However, I have had similar problems and we've never figured out what the root cause was.

I used to be on the forum a lot, but got out of the habit for two reasons; first was the problems with viewing threads and second, so much of my issues simply don't apply to what is happening to the majority of folks on the forum. I have wegs, but I also have Granulomatosous Hypophysitis and Psoriatic Arthritis. Half the time I don't which disease is acting up and lots of times the doctors don't either. So my issues simply don't apply for the most part You can see the full line-up in my sig below.

I did take note of your comment about being on so many drugs and got a bit of a chuckle.... I'm currently on 19 different drugs. Of those 19, I have one that has 3 different doses and I take a different dose depending on the day of the week. I also have 2 drugs that are injections -- one is really a pain, but I only have to inject it once every two weeks. The other is an everyday injection, but it is a little tiny needle and little tiny dose (human growth hormone), so no problems. I also have testostrone as a gel and I rub it on every day and twice on two days of the week.

It is beginning to get complex. I keep my drugs in a fishing tackle box that has 16 compartments. A couple months ago, I had to use my dremel to "standardize" some of my pill bottles so I could get two bottles in each compartment. Basically, all I did was remove the child-proof part so two would fit in each compartment.

Anyway, it's a bit of a challenge. Usually, I don't add my 2 cents anymore unless I really think I have something that no one else has covered.

Oh, BTW, not to hijack the thread, but if you haven't added your stick pin, don't forget the wegs map..... I cleaned it up yesterday and took out some duplicates. I also put a candle in for Brandon Button in Johannesburg. Does anyone know of any other deaths that I need to add a candle for?
https://www.zeemaps.com/map?group=242717

pberggren1

10-12-2013, 10:43 AM

We still miss you vdub. Thanks for taking care of the map for us.

vdub

10-12-2013, 11:17 AM

Oh, I still lurk around and, if not me, then the wife is lurking. One of is lurking. Someone has to keep an eye on you..... :-)

pberggren1

10-12-2013, 12:57 PM

Oh, I still lurk around and, if not me, then the wife is lurking. One of is lurking. Someone has to keep an eye on you..... :-)

Oh, I got a few peeps around here that keep tabs on me just find....lol

Wegetarian

10-12-2013, 01:08 PM

Hey vdub! I did put a marker on the map when I joined, but updated it now.

I used to be on the forum a lot, but got out of the habit for two reasons; first was the problems with viewing threads and second, so much of my issues simply don't apply to what is happening to the majority of folks on the forum. I have wegs, but I also have Granulomatosous Hypophysitis and Psoriatic Arthritis.

Resetting the posts per page setting seemed to help the forum functionality a lot. Dunno if it would work fine now with the updated software though.

I actually happened to read your story yesterday. One in 10 million to get GH, eh? That's like winning a smaller lottery I guess.. I who thought weg's was rare... I assume the GH destroyed the areas in your brain that made the growth hormone then? Dunno if I mentioned it, but I was also in brain surgery this summer. Just a benign cyst though. Yeah, you are right about the meds. At the moment I guess I only take two for their use - and then a few other to protect me from the side effects. It just feels weird to have a pill pox with so many pills for the day when I used to take none. PA does sound like a pain to have. Is it active all the time or how does it work?

pberggren1

10-12-2013, 01:21 PM

We have all won the lottery.

Wegetarian

10-12-2013, 02:09 PM

We have all won the lottery.

Oh, I don't know about that. I think some estimates put the odds of getting Weg's as low as 1:20.000, imagine what a crappy prize you would win with those odds... oh wait, I stand corrected - we did get the crappy prize!

pberggren1

10-12-2013, 04:47 PM

Ya, Wegs is around 1:5,000 or so. That would be a poor prize indeed.

Alysia

10-12-2013, 07:40 PM

Ya, Wegs is around 1:5,000 or so. That would be a poor prize indeed.

statisitics depends on where you live. in Israel, I was told it is 1:100,000 so I am RICH :wink1:

wegetarian, I am sorry that you have to deal with this eyes issues now. I suggest you consult with eye doc who knows wg, to rule out eyes-involvement.

vdub, your other illnesses are "relatives" of wg, so please stay.
the candles lighting on the Map made me so sad :crying: I wish they will be the last ones...

vdub

10-12-2013, 08:33 PM

mishb

10-12-2013, 09:39 PM

Oh, I still lurk around, but the input of others is often more relevant than my experiences. But I will always watch what's going on. This is a very important forum and it has helped me, as well as others, a lot.

We miss your input vdub. :sad:

I was beginning to think that Phil kidnapped you after your meeting :tongue1:

vdub

10-13-2013, 12:17 AM

Since Feb I have been pretty sick. I was in and out of the hospital twice last spring and summer. Not sure if Phil mentioned it, but shortly after our meeting in Helena, I ended up in the hospital there for 2 days. And, like everyone on this forum knows, you have real long spells of fatigue and really feeling poorly. There are lots of times where I open up the computer and see something I want to respond to and I just don't have the energy to do it.

I had mentioned to Andrew the other day that I would love to come to NZ and OZ one of these days, but sometimes I think its just a pipe dream. I really haven't been very stable since all this was dx'ed 3 years ago. I would think I would have to be stable for at least 2 months before launching off on an adventure down under.

pberggren1

10-13-2013, 06:34 AM

I so here ya vdub about wanting to respond to posts but just not having the energy or even no energy to fully read everything.

Wegetarian

10-15-2013, 05:28 AM

Just a quick update. Went to the shrink today, had a nice conversation and she had some really good points about talking to my kids - mainly about how to better reach my son as he'd rather talk about his video game that he gets to play a few times per week. So she suggested I'd try working it into the convo, like what would he do if he had Jedi powers. Way too often our conversations are a long monologue about the differencies of Dragonvale dragons. She also wanted me to bring my spouse there, I talked about it at home earlier but couldn't get a suitable time and since I thought I'd return to work soon I figured I might pass. She kind of insisted and said that its not too rare for people who have separated after a spouse having a tough disease to now have processed and discussed about the disease. So I'll try to take my spouse with me for the next visit as I've felt we've been drifting a part. Obv my surgery and now the wegs has put a lot of stress on her. The shrink didn't think it was too good of an idea that I'd return to work now (my sick leave was ending on Friday and was planning to return to work at beginning of Nov)

I also went to my ENT who is my main doc. My nose is a lot better now, and although crusty the membranes seemed healthier. I will again lower my pred at the beginning of Nov (30mg -> 25). I've felt that my feet have been a bit jittery at times if I sit in an awkward position, and my hands and feet fall asleep more easily. I didn't really consider this important, but mentioned it to her. She seemed a bit worried since she meant MTX could cause paralysis... Darn.... Well she would have called a rheumy, but as I'll see one next week I said I could discuss it then. My sick leave was also extended to early December. Kind of have mixed feelings about that, I do miss work but I don't think I could do more than 4 hours without feeling completely fatigued. My guess is that working for very short hours wouldn't really benefit my company much, I most likely have a big project coming up in January though and figured I'd try to use the time to get into a better shape and hope I'll feel like excercising again soon as I've felt quite fatigued the last few weeks.

I feel so sorry about the docs in the public sector, she really seems to do everything she can and at times have to consult an army of other doctors to get the information she needs. My appointment was one hour late, and the nurse apologised and said the 15 minute appointments took longer so they were running late. My 15 minute appointment took 45 minutes, but I was the last patient for the day so the nurse said they weren't in a hurry. How are the poor things supposed to do a good job in 15 minutes ffs... Its not like it was some mundane assembly line work, must be real stressful for them. So I brought her a box of hand made chocolate, it really seemed to brighten up her day. I sure hope she enjoys good chocolate as much as I do :)

I'll go for a chest X-ray and eye MRI on Thursday and for a lot of blood tests and urine test on Friday. Oh wegs - imagine how boring and mundane our lives would be without you!

Wegetarian

10-15-2013, 05:32 AM

I just realised my quick updates are never quick... lol.

Dirty Don

10-15-2013, 05:33 AM

For some, higher doses of pred can mimic 'restless leg syndrome'. I have it at times, and on higher doses, had it all the time when just sitting, never bothered me while I slept tho.

Dirty Don

10-15-2013, 05:46 AM

I just realised my quick updates are never quick... lol.
At least you're a decent writer who can spell...LMAO!!!

Wegetarian

10-15-2013, 06:42 AM

For some, higher doses of pred can mimic 'restless leg syndrome'. I have it at times, and on higher doses, had it all the time when just sitting, never bothered me while I slept tho.

Thanks, yeah - I kind of assumed its nothing important. I remember hearing about other people having that issue too. Although I don't remember having it when I was on 80mg, now I "only" take 30mg.

For me its like really light, I barely notice it so not a problem per se. I mean that my feel fall asleep, i.e. they feel a bit funny - not that I'd have the issue when I go to sleep.

pberggren1

10-15-2013, 08:01 AM

Well Wegetarian, I would say you need to communicate better with your wife your feelings and get her to communicate better with you as well. You need to know how each of you is feeling about your disease in general.

Wegetarian

10-15-2013, 08:34 AM

Yeah, I wish it was that easy. The summer drained her energy and on top of that she has had some issues at work and has worked way too much. She prefers to have some time alone in the evenings, which I understand well. We'll be seeing the shrink together when I come back from my two week spa trip (going next week). I don't think she wants to hear bad news about the disease, but I try to tell her all the good stuff I hear. We'll have a vacation with the family from Wed-Sun which I think will do us good though. She also promised to work less now that this thing she was organising is done.

pberggren1

10-15-2013, 08:48 AM

Family is the most important thing you have. Take care of it well and it will take care of you.

Alysia

10-16-2013, 01:42 AM

I don't think she wants to hear bad news about the disease

partner sometimes tend to deny the real state :sad:

drz

10-16-2013, 10:15 AM

I so here ya vdub about wanting to respond to posts but just not having the energy or even no energy to fully read everything.

I remember those days very well, sometimes too exhausted to even log in and read anything. I hope those days don't return any time soon.

Wegetarian

10-23-2013, 07:37 AM

At the spa currently. There are 10 of us vasculites, I guess at least 4 were wegs. Arrived yesterday morning. Yesterday I had a session with the nurse and the doctor and they made me a plan for me for the two weeks. I also went to this water walking class which wasn't as silly as I expected, actually kind of relaxing. We also had a lecture on the psychology of pain

I had asked in advanced if I could have a few sessions with a swimming instructor as I wanted to improve my techniques, got a personal session this morning followed by some water gymnastics and then a trip to the physiotherapist. We had lectures on osteoporosis and the ergonomics of sleeping (I also got to borrow a Tempura pillow, they also have some special mattresses and stuff that they lend but just want to try out some pillows).

Tomorrow we'll have a lecture on setting goals for us, a lecture on food and cholesterol some relaxation practise and a psychotherapist group for us. I also have a fitness test.

On thursday we'll have a lecture from a rheumy, a lecture about cortison and painkillers, I'll have a session at the gym with a personal trainer I guess and then water gymnastics (as a group) in the evening we have some kind of get-together with the vasculites, but I guess we'd need to plan it ourselves. Been trying to get people to go out for dinner but not sure if the others are really up to it. Might lend a bike tomorrow and go and check out the nearby city too since I have a few hours if I skip lunch (and eat in the city).

On Friday we'll have some behavioural therapy group, I'll have some more physiotherapy, something with a nutritionist, a relaxation session as a group, and a second swimming technique lesson. Haven't written all the stuff for next week in my calendar. On Saturday there isn't much and Sunday is essentially a day off.

Was going to write summaries here on all the lectures, but I've felt lazy. I have been taking notes though, so hopefully I'll write something soon. I'm usually quite easy to manipulate into doing stuff, so maybe you should try to convince me to write those summaries :)

Real happy with the trip so far. I asked for a private room, but they would charge for that. My roomie is a weggie too and nice so I'm fine with having to share a room even though I would have really loved some peace and quiet.

Dirty Don

10-23-2013, 08:53 AM

Pretty cool! Ear plugs work pretty well for noise!! LOL! Best of luck and have fun!

Wegetarian

10-23-2013, 10:58 AM

I have noice cancelling head phones which are great if my roomie is for instance watching TV (or playing on his PS3 which he brought along). But yeah, its great that they organize these kind of retreats. I hear next year its most likely going to be 5+5+5 days, i.e. three separate weeks. Now I'm here until Friday next week and I'll return in March. Was feeling a bit skeptical at first about taking a week of work in March to return, but after spending a few days here I think it will be really nice to come back. They also take a lot of measures, i.e. weight, BMI, width of my waist so they can keep me accountable for the results.

mishb

10-23-2013, 07:24 PM

It sounds awesome Wedgie and almost to good to be true.
I wish other Countries - no, my Country, did something like this.

Would really love to hear the notes you have taken but will wait until you are ready - if I have too :crying:

Don't use up all of your spoons whilst you are having so much fun :flapper:

Alysia

10-24-2013, 04:19 AM

Hi wedgie,
It sounds just great :thumbup:
can weggies from other countries come too ?
enjoy your activities and tell us what you learned.

Wegetarian

10-24-2013, 04:58 AM

Knowing my limits is certainly something that I suck at. I mean I felt really energetic about a month ago, then walked for 6 kilometers (on two trips) and felt good and helped my parents with computer stuff etc but the following day I was beat and have been feeling flu-like ever since. Dunno if its just a coincidence, and I also had issues with the meds at that time when we discountinued my MTX for two weeks.

Today I only had one excercise, which was a test of our strength. We had to lift these dumbels and do stomach muscle and back muscle and leg muscle tests. My legs were completely beat after that, but since I had for the first time two hours without any mandatory classes I figured I'd loan a bike and ride to town to pick up some stuff I need. Also went for a pizza since I had to skip lunch and wasn't sure if there were any vegetarian food in the local small lunch places (I always have good excuses to choose pizza). My legs were pretty sore when I came back, but I do feel better than yesterday.

We had a very interesting lecture about diets. Turns out eating too much calcium can be quite dangerous for us as it can help in clogging arteries. Like I'm eating 1000mg / day in supplements and doses over 1400mg (I think) could become dangerous. It also depends on the amount of vitamin D we have, as it will help get the calcium to our bones.

Yeah, I'll try to write the notes I took. A few of the classes weren't too interesting for us, while others like todays diet class was but I have a ton of info on papers we received and I'll also need to translate it.

Alysia

10-24-2013, 05:19 AM

.
We had a very interesting lecture about diets. Turns out eating too much calcium can be quite dangerous for us as it can help in clogging arteries. Like I'm eating 1000mg / day in supplements and doses over 1400mg (I think) could become dangerous. It also depends on the amount of vitamin D we have, as it will help get the calcium to our bones.

my doc told me not to take supplement of calcium at all.
am I the only one on pred, not taking calcium?

drz

10-24-2013, 06:19 AM

I probably take a couple thousand MG supplements every day plus vitmin D but so far my bone loss is small and my calcium levels normal in my blood samples. i will ask about this next time I see my Weg expert at Mayo.

Wegetarian

10-24-2013, 06:35 AM

my doc told me not to take supplement of calcium at all.
am I the only one on pred, not taking calcium?

Strange, in addition to the calcium I take a medicine to help my bones.

Wegetarian

10-24-2013, 06:55 AM

So about the sessions.

We had one about setting goals, but I didn't really get much out of it. The only thing that stuck with me is that internal goals are better than goals that come from outside. I.e. its easier to achive something if you really think its important and not because someone else says its good for you. Kind of obvious though. That said I will practise on the strength tests that we did here as we will return in March and do the same tests, and I'm in bad shape now but want to see some improvements when I come back. I also aim to lose weight and be in a better shape in general.

About sleeping:

7-9 hours is what most adults need.

REM is important for learning, memory and mood.
NREM (Non-rem) is relaxing and helps you feel rested, 2-3hours should be enough to feel rested.

Sleep is needed to rejuvenate the body and mind and to keep your bodys resistance (against disease). Also to gather energy, to aid your memory and learning, to help maintain your physical and mental health.

Sleeplessness make you more prone to accidents, infections and allergies. Makes your concentration, memory and mathmematical abilities worse. Can make changes to hormonal funcitons.

For better sleep:
- avoid rough excercise 2 hours before going to bed
- a regular schedule and evening habits
- write a list of your worries on paper (helps clear your mind)
- avoid a heavy meal before bedtime
- an active vacation (a sporty vacation away from your home environment)

There was also discussion about the correct mattresses and pillows, but the illustrations helped quite a bit so dunno how helpful it would be to write about it.

Osteoporosis:

We had some links to local pages, but I doubt they will be helpful for english speakers

With cortisone 1000 mg calcium and 20 ug D-vitamin should be used. 50 ug is not too much. (There seems to be a lot of discussion about the correct amounts of D-vitamin, and for instance on the lecture about diets the speaker was very hesitant to discuss amounts. He said he had measured his levels and he needs to take more than recommended)

Psychology of pain:

How you react to the pain makes a difference on how you feel it, i.e.:
- muscle pain
- this could be dangerous
- will this pass, or get worse
- its going to pass, I'll take it easier
- don't worry it will be ok
- it didn't last the previous time either

Different pain can be felt

- Same diagnosis, different pain
- Same treatment, different result

Acute pain:
- warns the body about damage

Chronic pain:
- Over 3-6 months
- wearing out
- Will not heal in the usual time
- The messaging system for pain starts to work wrongly
- A stimulant which didn't cause pain before causes it now
- Spontaneuous pain can be had without any stimulants

Its hard to measure pain
- Like describing a color to a blind person
- A scale (i.e numbers) can be used to get an idea of how the patient experiences the pain
- Not possible to compare the pain of two persons

- pain diary to help keep track
- pain dictionary to help discuss with the doctor, i.e. different descriptions for pain

How to decrease pain:
feeling good
good physical condition
rest
activeness
getting out
stretching
gymnastics
counter stimulant, for instance massage
good relationships
feeling safe and being at peace
falling in love
good company
medication
moving your thoughts away from the pain
attitude, i.e. I won't give up
mental excercices
faith in the future and in healing
listening to music (regular listening decreased pain in about 20%)
group sports was more effective in alleviating pain than individual sports.

Pain gets worse:
depression
tiredness
bad physical condition
certain movements
passivity
fatigue
a loved one not feeling well
fear
stress
money trouble
bad weather / change of seasons

Ok, that's it for today :) I'll need to take a look at the papers we got about the diet before I can write about it. We'll have another session about nutrition and I'll also have a private appointment with him. So I might be able to ask some questions if you have really good ones.

Wegetarian

10-24-2013, 06:58 AM

Hi wedgie,
It sounds just great :thumbup:
can weggies from other countries come too ?
enjoy your activities and tell us what you learned.

Yeah, its awesome they organise something like this. I heard the plan is to have it 5+5+5 days next year, i.e. three sessions. Would have been better for me too, its hard to get away from the family for two weeks. I think if I had been working then taking a week of every 3-4 months would also have been easier.

For this course I don't think they could accept people from abroad since its our health care system that foots the bill. They do run a regular spa here though, so I think it could be quite possible to come here for a while to take part in the water gymnastics etc. Dunno about the lectures, but they aren't in English so I doubt they'd be of much use for people outside our country. The prices for a 3-day spa trip seemed quite reasonable, I think it was about 300 euros per person and I suspect they include meals and some group excercises.

drz

10-24-2013, 11:27 AM

There are some places here that host similar things but I don't know of any that are funded for anyone by insurance or other organization. Maybe some insurance plans might cover such things but I am pretty sure mine won't. Most of treatment program focus on something specific like pain management or over coming chemical dependency. I don't know of any for Wegs in USA but think it is a great idea.

pberggren1

10-24-2013, 01:40 PM

I take 500mg a day of Cal/Mag citrate along with 3,000 units of vit D3 as well as Strontium. I suggest having a bone scan done. If it is normal then one does not need a biphosphonate. The best way to get Cal/Mag and Strontium is through a proper diet. I eat a lot of dairy so my doc thinks that 500mg of Cal is good for me. She said she would not put anyone on more than 1,000 mg a day.

Wegetarian

10-24-2013, 07:19 PM

I suggest having a bone scan done. If it is normal then one does not need a biphosphonate.

Already commented in your thread before I had time to read this :)

Well I asked them about the bone scan, but they weren't sure if its needed. I then talked to a private rheumy and he said that young males like me should have good bones so the scan isn't needed so I didn't pursue it further. But dunno why I'm on biposphonate :/

Really good that this came up now, I have a phone time with my doc today so I can ask her. We also have a lecture by a rheumy today who should be very good, but not sure if there is time to ask questions which aren't related to the lecture.

Alysia

10-24-2013, 07:25 PM

Hi Wedgi,
thanks for sharing what you learned :thumbsup:
it is like you are a bit taking us with you, to learn together :wink1:
please continue...

Wegetarian

10-24-2013, 08:25 PM

I don't know of any for Wegs in USA but think it is a great idea.

It sure is. I mean I've frowned a bit upon this courses in the past. They must be silly-expensive to organise. I mean the thought was that my sick leave would be over so the health care system would pay me for the two weeks spent here and in addition give some kind of payments for the trip. Obviously two weeks room and board and the lectures and exercise classes that are tailored to our needs can't be cheap either. I do wonder how long these will be held as the government tries to save money everywhere it can...

For me this is great though. I was in such a bad physical condition when I arrived, but the daily excercises are great. Its also so nice that its very easy to do something extra. Like on the first day I went to the spa after classes for a swim and yesterday I borrowed the bike to ride into town. Haven't been feeling too good though, otherwise I'd had gone to the spa yesterday evening too. The gym is small but nice, I think I'll use it more next week. I booked a couple of sessions with a swim instructor who helps me improve my swimming techniques, so I have my second session tomorrow and would love to go practice today but I'll most probably skip it again since I have a nasty cough and don't want it to get any worse.

Wegetarian

10-24-2013, 10:04 PM

Just had a chat with my doc. My ANCA levels had gone down to 6 (were 25 at the beginning). My chest X-ray was fine, already heard last week that the eye MRI was also good. All other levels were fine too, so most likely I won't need to have blood tests every two weeks anymore. She said that as I'm still on high doses of cortisone I should take the 1000mg of calcium and the biphosphonates. Dunno, might ask around what the consensus is over here.

Lecture by the Authorized nutritionist

The lecture was for all the attendants, not just for us vasculites. I guess everyone there had some sort of rheumatic condition but he knows there were also a group of vasculites attending.

We shouldn't eat too much calcium. It put us at risk for heart and blood vessel diseases (and death). The calcium we get from food isn't going to cause this, but taking too much in supplements could put us at risk. (The exact numbers weren't in the papers, but if I remember correctly over 1400mg would be bad, and even with lower amounts it might not be used for our bones if we don't take enough D-vitamin in which case it ends up in our blood stream)

He also said Rheumy infections increase our risks for heart issues (tough to translate the details)

He mentioned that we who suffer from an auto-immunity disease are 5x more likely to get another auto-immunity disease than a healthy person.

He was very keen on recommending us to take Omega 3 fatty acids. He also recommended nuts as they contain a lot of good fats, like walnuts.

He warmly recommended us to choose full grain products over white wheat, and that the fiber also helps in keeping our cholesterol levels down.

After reading the papers I felt a bit disappointed that a lot of the material presented wasn't in the hand outs. They mainly discussed the fatty acids.

Wegetarian

10-25-2013, 08:15 AM

Had a couple of lectures today too. One was general information about vasculitis by a rheumy, it was quite interesting but I have to see how much there is to write about it as I doubt its useful that I write about other vasculites and some of the stuff is difficult to translate. The other lecture was about painkillers and cortisone by a nurse, but it was aimed at rheumy patients in general so not too much info for us - and a lot of the information was regarding different medicines and I suppose they have different brands in other countries so again not much point in me writing about them.

The nurse did say that according to the newest information it would be best to take cortisone between 02-06 at night as it would cause less issues for our sleep cycle and I guess mimic the body's natural production better. Dunno, I can't imagine taking it at that time since I want to take my stomach med the first thing in the morning and I really don't want to wonder in the morning did I take the pred while I was half asleep or not... She also said there is a new cortisone called Lodotra which is slow release, so you take it at 10pm and its released into the body at 2am. She said its an interesting alternative for people who are really stiff in the mornings before taking their cortisone. I guess its not widely used here, and there isn't long term data available but could be an interesting drug for some. She also said cortisone has a big difference in making it easier for us to get infections, and she had seen some studies about it (unfortunately I have no more info about them) and reminded us of good hand hygiene as it could help prevent infections.

Alysia

10-25-2013, 04:33 PM

The nurse did say that according to the newest information it would be best to take cortisone between 02-06 at night as it would cause less issues for our sleep cycle and I guess mimic the body's natural production better.

thanks for the generous sharing of all the info :thumbsup:
taking pred in the middle of the night to help sleeping better sound strange to me :unsure: (maybe I didn't understanad it ?) I am taking my pred first thing in the morning, with some food.

Wegetarian

10-26-2013, 12:34 AM

I think she meant that you'd be able to sleep better next night, i.e it wouldn't disrupt your patterns. But I certainly agree that it would be incredibly inconvenient to wake up to get pred at say 4 am.

Wegetarian

11-08-2013, 03:50 AM

SpaceflightAddict

11-08-2013, 04:22 AM

My toenail turned white about a month ago, the doc suggested I should go to the lab to get a sample taken. I also asked if we could check my D-vitamin levels since the nutritionist thought it would be important, and asked if they could check the liver values so I'll get those too. Better safe than sorry :) Actually I'm kind of surprised they haven't checked the D-levels since based on what I heard it could be fairly dangerous to take lots of calcium if those are way too low.

I also took the flu shot. Have fairly mixed feelings about that, but since all my docs have recommended it so figured I'd take it this year. They would also give me the PNP pneumonia shot, but for some reason my doc didn't recommend me that. I know a lot of local Wegs have been recommended to take it even if it costs like 80 euros if they need to pay for it (I can get it for free from our company doc). Guess I'll ask my doc again when I talk with her. Not too keen on taking vaccines, but I understand the pneumonia can be pretty rough for us.

My vitamin D levels were extremely low when I was first diagnosed, but my doctors still suggested I take a calcium supplement with D3 in it, as well as a weekly 50,000 IU pill of D2. My D 25-Hydroxy level was at 2.3 ng/mL when I was hospitalized, and has risen to 29.3 ng/mL as of two weeks ago.

My wegs doc highly recommended the flu shot and pneumococcal vaccine, but said to make very sure that it was the dead virus form of the vaccine. I had both of those two months ago, and I have had no ill effects from them.

Hope everything is going well for you!
-SpaceflightAddict

Alysia

11-08-2013, 04:50 AM

Hi Wedgi,
welcome back from the spa :smile:
checking liver functions should be on a regular basis. it is included in my blood tests every month.
what's wrong with your toenail ? only one ?
now that you had the flu shot you can tell us how it is, and I hope you will have nothing to tell.

Wegetarian

11-08-2013, 05:00 AM

Thanks, I feel real good. Best I've felt in three months I guess :) I miss going to work though, hopefully I can return next month as planned.

I take 20uG which is included in the calcium supplements, and in addition I've taken 25uG (not prescribed but figured the amount I had was real low). I have to check how much its in IU, I think its 40x so it would be 1800IU in total but could double check from the pill box. I live in a very dark and northern country though, so the requirements for us should be higher than for people who see the sun.

Thanks Alysia :) Was nearly planning an escape from the spa during the weekend, but all in all it was a nice trip and I got a ton of exercise which I really needed. Didn't get as much new info as I had expected, but I think thats in a large part due to me reading everything I could find so there wasn't that much new to offer.Yeah, its only one toe and I don't have any symptoms except it turning white... So haven't been worried but still figured its good to check WTF is happening...

pberggren1

11-08-2013, 05:31 AM

Sounds like the flu shot is eating away at you Wegetarian. I can certainly understand that. Back in 2004 I got it as well. I let my doc talk me into it. She was very adamant that I get it. I had an immediate reaction of a rash that went away in a few days and I also fainted and threw up because I was very cold and weak right away. Then I had to get the flu shot in 2011 with my cochlear implant surgery along with Menactra and Pnuemmococcal 23. I had immediate reactions to those. My mouth has been very dry ever since.

pberggren1

11-08-2013, 05:32 AM

I remember when I flared in 2011 shortly after my big toe nails both became ingrown and I had to have them trimmed then later removed. New ones grew back and both are fine now.

Wegetarian

11-09-2013, 04:33 AM

I take 20uG which is included in the calcium supplements, and in addition I've taken 25uG (not prescribed but figured the amount I had was real low).

The lab results came back. I had 51. I guess over 40 nmol/l is OK, but the report stated that for the benefit of the bones over 80 nmol/l is recommended and over about 375 nmol/l is toxic.

Well, guess I'll take some more... I kind of wonder why we are recommended so little D-vitamin over here, especially for people with an condition such as ours and who are forced to take extra calcium.

drz

11-10-2013, 11:30 PM

I was started on 50,000 mg vitamin D when in hospital and took this dosage for several months till my pharmacist pointed out that such a high dosage was a poor way to take it and I would be better served by taking 1000 or 2000 mg daily since much of the large dosage was wasted when taking it all at once each week. So that has been my dosage for past three years along with 1000 -1500 mg calcium in two forms. Most clcium supplements and multi vitamins also include vitamin C too.

Barbara N

11-11-2013, 05:59 AM

Wegetarian

11-11-2013, 08:09 AM

Last time I took the flu shot was in 1976, and I got pregnant

OMG! I had no idea flu shots could cause pregnancy.

Wegetarian

11-24-2013, 10:10 PM

Had a doctors appointment for the ophthalmologist this week, I had felt like my eye-sight had been improving and the tests confirmed it. He figured the high cortisone doses had caused it and that it should continue to improve when I get off cortisone. He figured the slight double vision issues I have where also a result of my eyes slightly swelling from the cortisone and that should also improve.

So nice to only get good news when seeing a doc :)

Wegetarian

11-30-2013, 09:03 AM

Went to see my doc this week. Everything seems to be fine, although I've experienced some numbness in my hands and feet. It pretty much just comes if I have my hands in an uncomfortable postion, although just wearing my wrist watch seemed to trigger it too. Doesn't really bother me but I'm going to some tests for it.

One week of sick leave left and then I'll start working part time for Dec and Jan and fulltime in Feb. In December I don't really have much work to do though, and lots of vacations to keep. But in 2014 I'd have a ton of stuff to do, so I hope I'm up to it :)

For some reason the pred tapering seems to be incredibly slow. Its been almost 4 months since I came out from the hostpital and this Sunday I will go down to 15mg, but then I think its in June 2014 that I will go down to 5mg. The doc also said we might got down to 20mg of MTX at the later part of sping.

I'll also need to eat pills for my stomach and for my bones at least until I get to 10mg of Pred.

Been excercising a lot. I think I went 5 times to the gym this week and I'll take my girl swimming tomorrow (although that's play time and not excercise). I do quite light excerice, like 30 mins on the cross trainer and then some lifting with really light weights and maybe 50 reps x 2. Feel good, but I do need to take a rest in the afternoons. I wouldn't mind my own office for naps when I go back to work.

Alysia

11-30-2013, 08:43 PM

Hi Wedgi,
I am glad that you are feeling better in many ways and exercising a lot.
soon you will be in a better shape then before the wg. this is what happened to me, since having wg I am not skipping any day of walking, no matter what.
going back to work needs some preparation to make sure that you can still rest enough and not be exposed to germs etc. and to still have unough time to visit here and post :)

Wegetarian

12-01-2013, 12:36 AM

Well the doc said my white cells have been high the entire time, and that the MTX hasn't taken them down. So if I understand correctly I shouldn't be any more likely to catch a flu or to get well from it than regular people. I'm certainly worried about getting enough time to rest once I get back to work, and also worried that I'll stop exercising especially once I work full time.

Wegetarian

12-14-2013, 03:36 AM

Turns out I had a ton of vacation time, if all goes well I expect to be back at work early Jan.

Been feeling good and exercising frequently. I still get tired during daytime, but if I don't hit the gym I think I can do without a nap.

Had some blood in my stool this Tuesday and slightly on Wed. Had me a bit worried, especially since I take the MTX on Mon evening and the Alendronat for my bones on Tue morning so was worried it might be related. Had a call scheduled with my doc for Thursday but it was someone else who called as my doc was away. Said I should go to the local health centre to get checked up. Went today (also had blood tests). The doc suspected it was some slight broken blood vessel but I'll give some samples next week just in case. She also did some checks to see it wasn't some local thing (kind of embarrassing to write about this stuff :))

My liver values were fine (I asked to have them checked since they had controls every 2 weeks earlier and now its 3 monts). This was nice to hear since I had a few glasses of wine at a party yesterday and will also need to start taking another drug for the toe-nail that turned white (fungus which needs 3 months daily medication, sigh).

My white cells where up, but everyone in my family has been down with the flu except me - so maybe that could cause it. I think I'll skip gym this weekend just in case.

Alysia

12-28-2013, 05:38 AM

Hey Wedgi,
you are too quiet lately... is everything ok with you ?
or are you just having fun, forgetting (hopefully) about having WG ?
I hope the "incident" with the Batman jokes didn't drive you away....
I miss you around.

Wegetarian

12-30-2013, 12:14 AM

Alysia

12-30-2013, 04:26 AM

Hey Alysia,

Thanks - yeah I haven't been here at all during Christmas (or at the FB forums). Kind of wanted to think of merrier things :) That Batman thingy did make me think that this might not be the friendly forum I thought it was, but I'm not driven away so easily.

On the other hand I've been feeling very good, and should be back to work so I don't really have any new exiting symptoms to figure out.

oh, no :( wedgi. I am sorry if you got hurt. no one means to hurt anyone. we ARE a friendly forum :wub: trust me. for about 6-7 years, I am a member in about 10 forums in Hebrew, and lately in some fb groups, and I can tell for sure, this forum is THE BEST. we are only human. misunderstanding occurs. but I can tell and it is not only my opinion, that we love you here and your presence is awesome, you contribute so much here, with lots of info, and great sense of humor and creativity. so please, don't go away.
http://t0.gstatic.com/images?q=tbn:ANd9GcRYJKdMdl0QUUUQVAu_rjsh1ORpS8y--kgajzA5Pj00qS4LcjO_NA

on the other side, I am very glad that you are feeling good, and this is a GOOD reason to be away, although we miss you here.... you can also come and tell that you are feeling good. it always gives hope. especially to the ones who are still waiting to remision (like me).
happy new year to you and to your family :hug1:

pberggren1

12-30-2013, 07:58 AM

Don't worry about that Dan. No harm no foul. It never offended me.

annekat

12-30-2013, 09:46 AM

Don't worry about that Dan. No harm no foul. It never offended me. I only remember one person being offended enough by that to speak up and say so, which he had the right to do, and his point was well taken. We are a diverse group of people here and will not all react the same way to everything. But it is now water under the bridge! I'm glad to see you back, Dan, and glad you have been feeling so well.

Wegetarian

12-30-2013, 10:52 PM

Thanks guys, yeah I kind of think someone could have just used the report post-option or PM'd me and I'd have removed it without that much fuss.... but yeah, doesn't matter anymore.

One eerie thing I've been thinking about is that I read somewhere that without meds the median life expectancy would be 5 months after diagnosis... It would be this week for me... spooky. I'm sure glad the Pred and MTX are working so well, even though the pred has so many side effects. On 15mg now and I think it was 1st of Feb when I'm supposed to go down to 10 - but I discussed with the doc and suggested I'd do 12,5mg for a few weeks in Jan.

Alysia

12-31-2013, 03:23 AM

Hi Wedgie,
I am glad you are back :love:
I think that for some of us, 5 months would be too long to keep on living. without pred I think I was dying in about 2 months after the onset. and there are here others who were in much more acute state....
well, something to feel blessed about, that we survive more then those 5 months !
lots of health to every one in 2014 and beyond !

annekat

12-31-2013, 04:50 AM

Well, the 5 month thing would vary by case..... I do think I'd have died within 5 months from dx, without meds, since my lungs had suddenly been hit very hard. But I also think I could have been dx'ed a lot earlier, if anyone had thought of Wegs as a possibility, but then the 5 month thing wouldn't have applied, because I went for 2.5 years with Wegs symptoms before my dx. If my lungs hadn't been hit, I don't know how long I would have gone on that way!

Wegetarian

01-17-2014, 11:31 PM

Pete

01-18-2014, 03:11 AM

Boring updates to report nothing much is happening are good!

Alysia

01-18-2014, 08:28 PM

mmm sneaking at work, Ha ?

http://cdn.cutestpaw.com/wp-content/uploads/2013/05/l-Sneak-attack.jpeg

I am glad you are feeling well. take care and don't work more then you can. come and visit more. we miss you :love:

gilders

01-18-2014, 09:26 PM

Wegetarian, don't go increasing your hours or work load too soon. I'm sure that's what contributed to most of my relapses. I had no real choice as I couldn't afford bills on part time hours, but now I've ended up unable to work.

MikeG-2012

01-19-2014, 04:04 AM

Sneaking in to post here from work. Kind of a boring update though, since nothing new to report except that everything is fine. Just got the results from my bloodtests yesterday and everything was fine, white blood cells were a bit up but they said its likely due to the cortisone. Been working 60% now, which is nice except I feel I don't have time to do everything at the office. Next month I'm supposed to work 100%, but that might be too much. The doc I said I should talk to my company doc and maybe try to work a bit less if I feel like that.

i know now how you feel. I'm up to about 75% of my normal hours now! and am frustrated that it can't make that last 25% get here so I can work full days again. I'm a one man department, and despite the best intentions of the three students that work for me, the work seems to pile up FAST! One day this week, I worked an 8.5 hour day. I felt really good WHILE doing it, but the next day, OMG!!! I paid for it'd big-time! I had to take the next day off to recover. My legs felt like jello the next morning after that long day.

Is is there any aspect of your job that you can do at home via the computer, etc.? I spent a day at home before the holidays working on the computer, trying to catch up some paperwork, attended a webinar, and completed a couple on-line training videos towards one of my industry certifications.

i guess my advise would be to listen to your doc and your body. Let them make the decision on when to go back to 100%.

MikeG-2012

Wegetarian

01-20-2014, 09:29 AM

Thanks, yeah - I'll try to change it to so I could work like 75% or 80%. With 60% I just don't feel I have time to do all that much.. Although its quite nice to go to work at 10 am and leave at 4pm. I guess that's right, I mean if I'm the last one to arrive I should make up for it by leaving a bit earlier ;)

I could do some stuff from home, but its easier to work there in the office. Not to mention once my kids get home around 3pm it gets quite loud to work at home. I did get my company to shell out for a faster internet for me incase I need to work from home, and I'm loving it :D

We were quite busy last week, so I worked about a full day on Thu and Fri. Was feeling quite exhausted on Thu evening, but on Friday I felt fine and even spared a few hours for my hobby once the kids were in bed.

But yeah, I think it would make sense to take some more time to heal. The doc did say all my results have been great and they will keep lowering the doses. Guess I missunderstood her since I had wrote down that I'd move to 10mg of pred on 1st of Feb, but she had meant I could do that on 1st of Jan. I'll start taking that on Wed since I had planned to take 12,5 for a few weeks before it, but guess one week will do.

Alysia

01-21-2014, 02:33 AM

windchime

01-21-2014, 03:40 AM

The Spoon Theory written by Christine Miserandino | But You Dont Look Sick? support for those with invisible illness or chronic illness (http://www.butyoudontlooksick.com/wpress/articles/written-by-christine/the-spoon-theory/)

Thank you Alysia. That was a very good analogy. A great way to explain it to friends and family.

Wegetarian

03-11-2014, 06:32 AM

Haven't been around for a while, mainly because I haven't been idle around the computer for ages. So much to do, but in a good way :)

Right now I'm at home with the flu. Strangely my kids and my spouse got a rough case of the flu like three weeks ago. Both my kids got a high fever, but my spouse hardly ever get a high temperature but was still bedridden for days. Didn't catch that one, then again I had taken the flu shot and was on antibiotics so they might have felt.

Went last week for some interesting tests. They were called ENMG and I guess this wiki article (http://en.wikipedia.org/wiki/Electromyography) sounds similar even though the abbreviation is a bit different. Was a tad worried since I had read that they might put a needle in a muscle to record the data. Guess I wouldn't have been so worried if not I had been in a very painful test the week before, where they jammed a video camera up my butt all the way to the small intestine... (Man that was painful, I squeeked like a little pig. Didn't expect such stomach aches. Next time they ask if I want painkillers I certainly won't refuse - that time I was driving and would have needed to leave the car if I had agreed). So I kind of assumed the needle might be something closer to a dagger that they'll jab in my arm.

Anyways, they just put some electrodes on my hands and marked the spots with a red marked and recorded the results, not painful and it was funny to see how my thumb switched each time they put on the electricity as the spot was near the nerves that control muscle movement I guess. I told the doc I had read that they might put a needle in me, and he said yeah - we could do that at the end... Kind of wondered if he would have skipped it had I not foolishly asked about it.

He did say it was more like a acupuncture needle, and the muscles don't feel that much. So it wasn't more painful than a mosquito bite even though he wiggled the needle for a while while I squuezed my toes. Couldn't stop feeling a bit like a car battery though (red dots are from the marker)

http://i.imgur.com/Uuxz0zx.jpg

Otherwise everything is fine. I really don't mind having a slight case of the flu. Took such a nice three hour nap after I took the kids to daycare and my mom was nice enough to pick them up and tend to them until 5pm.

Been working 60%, I feel like I could do more but for some reason that is the max I can do while on partial sick leave. Feels silly though, since I would have wanted to work 75% and then try 100% but no. The sickleave will end this week. The following week I'll be at that vasculite course at the spa again and then I'm supposed to work 100%.

Alysia

03-11-2014, 06:39 AM

Hi wedgi,
so nice to hear from you :thumbup:
I am glad that things are ok and hope that you will recover soon from the flu.
what is this test checking and why ? is it something wg-related ? or other ?

Wegetarian

03-11-2014, 06:42 AM

Alysia

03-11-2014, 06:47 AM

thanks for the explanations. I also went to neurologist to check for neuropathy and I recalled that she was talking about a test. maybe this one that you just did. she exmained me with needle too, to see my reactions. she said that I had it. she also sent me to MRI of the brain which turn out ok. thanks God.
so what are your results ?

drz

03-13-2014, 01:24 AM

Thanks.

The tests were related to neuropathy, as my hands and feet have gotten numb quite easily. Sometimes I also have this tingling sensation in feet when walking.

Those nerve test results were really good though, but the doc said he'd sent the results to the doc that treats me and she can then decide if further investigation is required (if I remember correctly the doc said that just tests the main nerves, but doesn't test the small ones).

I have had nerve conduction tests twice and both times they inserted many needles into the nerves at top and bottom of my legs and then ran electricity between them to measure their conduction. It was not a fun time but did confirm the type of neuropathy. I was surprised to fine my neuropathy of motor nerves exceeded that of my sensory nerves but this explained why I had so much trouble stumbling when I walked. Some research has suggested that an electrical stimulation of the nerves might help reduce neuropathy and mine did seem to lessen a bit after the tests after the tests.

Alysia

03-14-2014, 05:04 AM

Hey Wegetarian,
I just happened to see the pic below, and then to realize that "wedgie" is not only cute shortcut of "wegetarian" but that it means something like pants ??? :unsure: :confused1: :blushing: (English can be "hard nut")
so I was wondering about it...
how do you want us to call you ?

https://fbcdn-sphotos-b-a.akamaihd.net/hphotos-ak-prn1/t1/1530401_1474086399470172_656717337_n.jpg

vdub

03-14-2014, 05:35 AM

I had that nerve conduction test as well. I don't recall it hurting a whole lot, but remember that it was interesting to watch my muscles twitch uncontrollably.

From another post, I had mentioned that I tapered off of gabapentin (neuropath pain blocker) to gage the effect. I was on a very light dose -- only 100mg/3x day. Anyway, I have been experiencing a lot more pain than usual, so, today, I started taking the gaba again. It will be interesting to see if my pain subsides. I will check with my pharmacists today to see how quickly the gaba should get back into my system. I suspect it will take affect within 24 hrs, but I don't know.

drz

03-14-2014, 05:51 AM

vdub

03-14-2014, 05:59 AM

we save those for last cause if we did those first, no one would complete the testing
Reminds me of the movie "Right Stuff" where Alan Sheppard comes out of the nerve conduction test cradling his limp, lifeless right arm.... :-)

renidrag

03-14-2014, 07:43 AM

Does the medication for the neuropathy take all pain away? I sometimes feel like my feet are full of gel but with needles. Will it help with that?
Dale

Wegetarian

03-14-2014, 08:00 AM

"wedgie" is not only cute shortcut of "wegetarian" but that it means something like pants ??? :unsure: :confused1: :blushing:

Nah, it means a prank that I don't think you can do to girls. Here are some helpful instructions: How to Give a Wedgie: 11 Steps (with Pictures) - wikiHow (http://www.wikihow.com/Give-a-Wedgie)

I'm fine with it. That's the first thing I thought of with the word. I don't think I've ever got one either.... well at least yet.

vdub

03-14-2014, 09:29 AM

Does the medication for the neuropathy take all pain away?
I'm not in a position to say just yet. I did talk to my pharmacist and he said that restarting the drug (gabapentin) should take about 48 to 72 hours to feel the effect. So, I'll try to remember to report back in 72 hrs. But even at that, it might be so subtle, particularly at my extremely light dosage, that I don't notice the change for a week or more. And, if I do notice a change, I think I'd have to repeat the test over the course of a couple months while holding everything else stable to see if I get the same results each time. You can look the drug up on wiki and it has lots of uses, warnings, etc

And then there is always the mtx which many of us take once a week. I take mine on Thursday (for no particular reason) and it might have a bearing on how I feel on some day, too. But, it's a light dose, too -- only 20mg.

I quit doing my journal a couple months ago. I kept it up for about a year and then noticed that most entries for the day were something like "felt crappy all day". That's pretty useless info, so I gave up on the journal at the same time I gave up "chasing" my drugs.

windchime

03-14-2014, 11:24 AM

Does the medication for the neuropathy take all pain away? I sometimes feel like my feet are full of gel but with needles. Will it help with that?
Dale

Dale I take Lyrica and Mirapex which is for restless legs. The Lyrica helps a lot but doesn't take it all away. The Mirapex helps with the pain and the restless legs. I was very miserable before adding it to the mix. Things are tolerable now.

renidrag

03-14-2014, 12:12 PM

Any side effects with the Lyrica?

Alysia

03-14-2014, 09:28 PM

Nah, it means a prank that I don't think you can do to girls. Here are some helpful instructions: How to Give a Wedgie: 11 Steps (with Pictures) - wikiHow (http://www.wikihow.com/Give-a-Wedgie)

I'm fine with it. That's the first thing I thought of with the word. I don't think I've ever got one either.... well at least yet.
oh. no. looks too cruel and obscene :sad: but if the name is ok, then you are our wedgie, just for the nice sounds of it :wink1:
now back to the topic...

annekat

03-15-2014, 04:06 AM

oh. no. looks too cruel and obscene :sad: but if the name is ok, then you are our wedgie, just for the nice sounds of it :wink1:
now back to the topic... We can always call him by his name, which is Andy, I think......... Yes, back on topic.....

Wegetarian

03-21-2014, 08:22 AM

We can always call him by his name, which is Andy, I think......... Yes, back on topic.....

No, I'm not Andy - at least SpaceflightAddict is Andy, but that's a fun name too. From those I do think I prefer Wedgie. I think SpacePilot is Andy.

I'm right now at the spa again. This time for 5 days. My last night here (thank God). The two weeks I spent last time was way too much. One week is just fine, I still get wonderfully bored. Like its 10pm here and I feel ready to go to bed...

Lost 12.5cm from my waist, only a bit over 2kg in weight as some of the fat got turned to muscle.

The doc had an interesting lecture for us. I specifically asked about exercise and drugs for us wegs. He did seem to think it was OK to exercise while on Pred and MTX (or other cytostat) but it would take longer for us to recover from a flu while on immunosuppresants. Not really sure about that, as I've heard the joints might get damaged if lifting weights while on Pred. He also said that if we are in remission we shouldn't differ from healthy people in regards to sporting - but bodily stress can cause a relapse. Like he had seen some people get a relapse after say a marathon or similar physical stress.

Also discussed with my physiotherapist about going to the gym, and she suggested that I'd continue doing what I do - doing long reps with small weights and watching movies while on the Crosstrainer. Suits me :D Was thinking I might be a bit too careful about using heavy weights, but she said as long as I feel there is still an effect its OK and I can then increase them later. But for now I should focus more on the aerobic side which will also help me lose weight.

Aside from that there wasn't much new this time. Had some interesting talks, mainly with two fellow Weggies. The Internet is crap here, it works OK in the lobby-area but not in the rooms. I can use the Internet through my phone but we are in a rural area where the connection is still slow. Its OK for me though, I brought movies with me and have watched some of those. I'll have more than enough time to hang around computers once I get back though.

annekat

03-21-2014, 09:21 AM

No, I'm not Andy - at least SpaceflightAddict is Andy, but that's a fun name too. From those I do think I prefer Wedgie. I think SpacePilot is Andy.

Oops! Well, is it Dan, then? But if you like Wedgie, then Wedgie it is!

Alysia

03-22-2014, 09:12 PM

I've heard the joints might get damaged if lifting weights while on Pred.

Hi Wedgie :wink1:
thanks for the info. it sounds that you are on your way to be in good shape :thumbup:
Liffting heavy things is not allowed to anyone, because it can cause hernia and retinal detachment and spinal disc herniation and more :w00t:

Wegetarian

04-05-2014, 03:29 AM

Liffting heavy things is not allowed to anyone, because it can cause hernia and retinal detachment and spinal disc herniation and more :w00t:

You worry too much :)

Everything is well here. My bloodtests were fine, well my anca was slightly up (slightly under 7 if I remember correctly). Doc said we'd cut down the pred a bit sooner than planned if I keep feeling fine. So 5mg in May and 2.5 in Aug. Gonna be taking the 25mg of MTX for the rest of the year though.

Will keep working 60% for anohter month. Would like to increase a bit, but for some silly reason 60% is the max when on partial sick leave. The docs thought it would be a good idea to keep doing a bit less and focus on getting my health back. Well the doc who treats me didn't really have an opinion though. Been going to the gym a lot, mainly just using aerobic equipment.

Wegetarian

04-22-2014, 06:13 AM

Quick update. Feeling great. Lost some weight. Had a fun Easter with my family (although everyone has a case of the flu :)).
Still working only 60% of the time, most likely to mid-may but may need to start working 100% a bit earlier in case needed. Tried working three full consecutive days last week, was tired as heck on tuesday and had to sneak out a bit early and hit the bed at around 9pm. Then on Wed I felt fine and could have been longer but was needed at home. Figured it might well be the MTX I take on Mon evening (or the bone med I take on Tue morning) which make me tired on Tuesdays.

Alysia

04-23-2014, 04:32 AM

I am glad things are good :smile1: nice to have you around.
I just noticed that under your name, not like the others which are "registered user", you are: "awesome user". I do agree, but how did you make it ?
I already started to imagine what kind of "user" I am going to define myself as, maybe: "addicted user" :blushing: or.... still contemplating about it....

Wegetarian

05-08-2014, 02:23 AM

Sure, its hidden fairly deep in the settings menu though. First go to settings

http://content.screencast.com/users/temporaryfolder/folders/Jing/media/d356fc61-3a5c-42e5-8dc1-b2d6ef4bfc98/00000037.png

Then on the left hand side, choose edit profile
http://content.screencast.com/users/temporaryfolder/folders/Jing/media/deda21f5-fe8e-4005-a878-8e1980f3269b/00000038.png

Then look for the user title field and write something there.

http://content.screencast.com/users/temporaryfolder/folders/Jing/media/889c936d-07a7-4728-873c-00734d1b7e1b/00000039.png

Alysia

05-08-2014, 02:35 AM

Alysia

05-08-2014, 02:36 AM

lets see if it works for me :unsure:

yes. now I am officially "addicted user" :wink1: Thanks !

annekat

05-08-2014, 02:38 AM

Good one, Alysia! :biggrin1:

pberggren1

05-08-2014, 02:39 AM

I'm an addicted user too. I'm just addicted to you sweetie....:wub:

Wegetarian

05-08-2014, 02:55 AM

I think we have lots of addicts here, its like 30 min since I posted and so many replies...

Try to move your addiction into something healthier, like coffee :)

Alysia

05-08-2014, 03:04 AM

I'm an addicted user too. I'm just addicted to you sweetie....:wub:

aww Thanks :wub: now change yours user name to : Batman :wink1:

Alysia

05-08-2014, 03:13 AM

Try to move your addiction into something healthier, like coffee :)

our addiction is VERY healthy one :wink1:

Wegetarian

06-15-2014, 08:32 PM

Just had another scheduled blood test, 3 months since the last one. Everything was good. Now at 5mg prednisone and was told I no longer need to take the stomach pills or bone pills (acid. alendronat). Next month I'll just need to take 2,5mg of pred, the steroid nose-spray and MTX (+ folic acid) and in Sept I have blood tests and a doctors appointment and check if can quit it.

The MTX I'll have to take for a long time, the doc said after new years they start cutting it down with 5mg / year.. Was quite surprised since I thought it was taken down a lot faster. Based on what I heard from a local FB group lots of people have eaten it for 10+ years and have had a relapse if they were a few years without.

Anyways, feeling great and going to enjoy the summer :D

Wegetarian

06-15-2014, 10:41 PM

Forgot to say that I also visited the opthamologist for a check-up. My vision was fine, and he said that he could not see any trace of an infection. My eye-pressure had been on the high level mark before (think it was about 21-22), but even then they said that a layer of my eye was a bit thicker, which meant that my pressure was still acceptable. Not really sure about all the details, but guess it meant that it was OK for me. Now it had gone down to 16, and considering that one layer was a bit thicker he said it could be considered excellent.

Earlier a doc also said that she noticed I had begun to develop cataracts, and that its likely to get worse with the prednisone and that I might need stronger glasses (not using any at the moment) or surgery. Well now they said that there was some cloudiness, but it hasn't developed at all and unlikely that it will.

The doc also said that he doesn't see any reason to have more follow-up's, unless I develop some symptoms in which case I can ask my doc to send me there again. Heh, guess I've never been so happy to hear that I'm not welcome anymore ;)

The only negative thing I've noticed is that I seem to be losing some hair. Like if I comb my hair or apply some hair product a few strains of hair will stick to my hands or my comb. Haven't noticed this before, and its so little so not that worried about it. Did notify my doc about it, but its only been happening for a bit over a week so might even be some seasonal thing, dunno.

Alysia

06-16-2014, 12:09 AM

jvilner

06-16-2014, 08:02 AM

Mtx made strands of my hair fall out easy as well. Do you take folic acid 24 hrs after your dose?

Alysia

06-17-2014, 01:37 AM

Mtx made strands of my hair fall out easy as well. Do you take folic acid 24 hrs after your dose?

I took folic acid every day, in the evennings, when I was on mtx. there is also special Shampoo that can help.

Jayne 14

06-17-2014, 07:49 AM

What is the special shampoo ??
I'm starting MTX this weekend and am stressing about hair loss ( really vain I know )

Sent from my iPad using Tapatalk

Dirty Don

06-17-2014, 09:01 AM

Don't know about the shampoo, but a triple dose of the folic acid stopped my hair loss. Interesting thing is I tried to wean myself off it...hair loss came back...er, the hairs left...whatever...so am staying on triple dose...one doc said I may be on folic for the rest of my life...it could be worse! Best to you.

Jayne 14

06-17-2014, 09:03 AM

Thanks , how can I be so vain with a crazy looking nose
Saddle nose sucks !

Sent from my iPad using Tapatalk

Alysia

06-18-2014, 03:50 AM

What is the special shampoo ??
I'm starting MTX this weekend and am stressing about hair loss ( really vain I know )

I used 2 kinds of Shampoo when I was on mtx: one that I found at my barber's and the other one is here in the pic. I live in Israel and it is made in Israel so I dont know if you can find this one. it is based on Oblipicha Hippophae - Wikipedia, the free encyclopedia (http://en.wikipedia.org/wiki/Hippophae)

just check and ask at the pharmacy and at the barber untill you can find out that works.
http://3.bp.blogspot.com/-jONoPOASOfE/Thh3J3irMnI/AAAAAAAAAok/jD7syYUf6rs/s1600/Frulatte+Shampoo.JPG

Alysia

06-18-2014, 03:53 AM

Thanks , how can I be so vain with a crazy looking nose
Saddle nose sucks !

welcome to the club :crying: :bored: I get used to mine already :unsure: it is the "stamp" of being a weggie.... :rolleyes1:

annekat

06-18-2014, 04:08 AM

welcome to the club :crying: :bored: I get used to mine already :unsure: it is the "stamp" of being a weggie.... :rolleyes1: Me, too! Though I don't like people to see me without my glasses, from the side.... it looks awful, like some kind of weird beak. I don't think having a saddle nose is a reason not to care about hair loss, though, Jayne. I'd try the folic acid and take it every day, maybe 1000mcg. a day, not sure what others take. Some day not to take it the same day as your MTX dose. I had more hair loss with CTX than I do with MTX. With MTX and the folic acid, I know my hair is coming back in and approaching it's former thickness. I think I've even heard of people's hair coming back thicker and curlier after chemo. And maybe a different color, too. So far, mine is coming back the same.

Jayne 14

06-19-2014, 07:13 AM

Thanks guys , anything to help minimise the loss I'll try 👍

Sent from my iPad using Tapatalk

annekat

06-19-2014, 07:52 AM

Thanks guys , anything to help minimise the loss I'll try 

Sent from my iPad using Tapatalk I just corrected my post regarding the folic acid; it is actually 1000mcg that is a standard dose, or the same as 1mg, I believe. And it is cheap and available OTC at regular pharmacies and grocery stores, wherever supplements are sold... at least here in the US.

Jayne 14

06-21-2014, 09:36 AM

Cheers
I will check how much my doc said to take & maybe up it
👍

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Wegetarian

07-15-2014, 02:18 AM

great news :hug3: be careful with the pred, do not go so fast to 2.5 mg. go 1mg down for each month. it will be safer. and don't run so fast with the mtx as well. being without meds is too risky for us.

We don't have 1mg pills here, the smallest ones are 5mg. Dunno why that's the case. Anyway, its a tad difficult to cut down the size - the 5mg tabs are already so small that its tough to get two equal sized halves even though they have that line in the middle. (I use a pill-cutter that I bought for $1 on Ebay). I didn't really cut down on the first of the month, as I was feeling a bit flu-like again. But now I'm alternating between 2.5 and 5mg daily and figured I'd might do 2.5/2.5/5 the next week and then drop completely to 2.5.

Mtx made strands of my hair fall out easy as well. Do you take folic acid 24 hrs after your dose?

Yup, I take it. But the Euro and US recommendations are different. On my Folic prescription it says I need to take it 4-12 hours after taking MTX, and not 24 hrs after as the US peeps seem to do. Strange how the methods are different on the other side of the pond.

Not really all that worried about it, its just a few hairs when I comb, and not like in the movies where someone gets their fist full of hair by just stroking their hair. Now in the summer it might be nice, as it gets quite hot with a lot of dark hair on my head.

I just corrected my post regarding the folic acid; it is actually 1000mcg that is a standard dose, or the same as 1mg, I believe. And it is cheap and available OTC at regular pharmacies and grocery stores, wherever supplements are sold... at least here in the US.

The pills I have needed a doctors order, for some reason they couldn't do it electronically (we use this system where the doc's just put it on the computer and I can go to any pharmacy and they will find it with my social security number), so I had to go over to the doc and get the paper version. I think mine is 5mg (or whatever units) so I guess its even stronger. When I heard I was going to be on MTX I already read up on it and bought some B-vitamin tabs with folic acid and started taking them daily, as I figured I might not have that much vitamins in me already. Now when I'm taking those stronger ones weekly (been doing it since the start of MTX) I've just taken the B-vitamin tabs once a week.

Wegetarian

07-15-2014, 02:25 AM

Just started my summer holidays, went on a trip to my parents vacation home last Sunday. On Monday morning I woke up and my right ear felt like it does on occasions when flying, i.e. you have that pressure there and can't hear too well. Bought this spray that is made of olive oil and is supposed to help if its clogged from the ear wax, well didn't notice any difference. It got a bit better after a few days but still couldn't hear as well with the right ear and it felt a bit funny and hurt a bit when I sneezed. I would have gone to a doctor, but I was out of town and had my kids with me. We had also reserved hotels for a nearby city where my spouse was coming to join us, so figured I'd try to live with it and go to the doctor the first thing on Monday when I'm back home and the doctors office is open, but there were still 5 days left. Was a bit worried last week that it might be some mean symptom of Wegs, and it felt a bit dumb to wait 5 days before going to the doc but I really didn't want to stop my trip and spend a day in the medical centre.

So I went today, and the nurse told me she couldn't see into the ear due to the earwax, had it rinsed and the nurse checked that it looks good. I can also hear much better now. So many worries for just a dirty ear :D

Alysia

07-16-2014, 11:43 AM

Hi Wedgi,
sorry about your ears problems and I am glad that they are better. for me, extra pred helps with such ears problems.

Wegetarian

07-30-2014, 01:45 AM

Darn... A week and a half ago I was coughing and noticed a blood-splat on the wall. Took me a minute to figure out I had coughed up some blood. Well, I didn't cough up any more but there would be some if I spit after coughing. Called the doc as I was a bit worried since that hasn't happened to me before. Got an appointment for a week later, last Friday. He checked my throat through my nose, and noticed a red spot in my throat that he said was the culprit. He wasn't worried about that and said it looked like I could have a reflux issue (had stopped the stomach meds about a month earlier). So we decided that I'd continue to take the stomach pills until my next doctors visit. We also took blood and urine samples just incase.

Got the results today, ESR was up to 39, PR3 was up to 25 (similar to when I was dx'd) and my urine had blood and proteins. He sent me to get my lungs x-ray'd just in case.

Quite dissapointed. I had been going down a bit lower than planned on the Pred, as I had some aching in my legs in the mornigns and nights and figured I'm cutting the dosage in half when I go from 5->2,5 so I was still taking 5 and 2.5 on alternating days even though I was OK'd to go to 2,5 on the first of July. Well we upped my pred back to 5mg and the treating doc should call me next week to discuss what we'll do next. My vacation ends on Friday, so not gonna be able to rest much after that.

Guess I'm not gonna be pred-free in September after all.

drz

07-30-2014, 01:47 AM

Wegetarian

08-07-2014, 09:23 PM

Thanks.

They called me on Fri and told me to come to the hospital for a stay this Wed. Apparently they thought the chest x-ray had some Wegs changes.

So I arrived yesterday, the new bloodwork showed that my creatinine had jumped to almost 150. They upped the pred to 60mg. They would have scheduled a kidney biopsy for Fri but are worried about the Omega 3's I've been taking so I stopped those and we'll do the biopsy on Tue. Right now I'm getting an IV with 1000mg pred, which we'll do for 3 days and then orally 80mg/day. Then after the biopsy we'll do IV CTX. At least a week at hospital, and a month of sick leave.

Oh how I hate this. The meds are temporary, and though I realize they are toxic and would not want them, I still understand that its necessary. Its just that I really like my job and realize that by the time I get back the project might already be over. Was a bit surprised that they renewed the contract, they said that they liked what I've done and are hoping to make me permanent although my role is different from what the other employees do. Its just that I started march last year, then was on sick leave from June-Jan, was on partial sick leave until sometime in May. July was a break and now in Aug I worked less than two days before going to the hospital.

drz

08-07-2014, 11:50 PM

annekat

08-08-2014, 01:50 AM

I'm so sorry you've had a setback, Dan. I hope it will be reversed soon and you can get back to work. It sounds like your work is very understanding about your health issues and values you very much. That is great.

Wegetarian

08-08-2014, 09:15 PM

congrats on getting permanent appointment and recognition for your good work.

Oh I might not have been clear. They wanted to make me permanent but weren't sure if they could. My contract runs out sometime in Oct. Kind of wonder if I can return by that. Well, ofc the priority is to get well, everything else is secondary.

The took some samples of me in case I want to have kids in the future, as they said there is a chance of permanent infertility with the CTX.

Took the second 1000mg of IV cortisone today. They also wanted some extra blood samples, not sure why as they already took some this morning. Haven't received any info on the lung-pics. Might be able to go to home for the rest of the day, then come for my third and last 1000mg pred IV tomorrow, then again home and on Sun they have blood tests and also want to track more closely whats in my urine. On Monday the CTX IV starts, on Tue kidney biopsy and with any luck I'll be sent home on Thu (still need to get CTX IV's and blood tests, but don't need to stay in a hospital room for that).

On Wed the U-eryt value from the urine was 4000. It should be below 20. Guess it has to do with the blood or something. Heard it was down today to around 500. (didn't ask for yestedays or todays test), U-leuk was 109, should be under 10.

Guess the PR3 also went up a bit, was 27 on Wed. Crp was 41.

Well... I feel great, so there that at least :) Even got 5 hours of sleep with some very relaxing sedative even though I've taken 1000mg of pred in the afternoon (and 60 in the morning).

drz

08-08-2014, 10:20 PM

Sounds like some slight progress. Those high dosages of steroids can do a number on you but can also be life saving too. Hope you continue to show progress in your recovery.

Wegetarian

08-09-2014, 03:20 AM

drz

08-09-2014, 01:45 PM

I'm surprised I don't feel worse from the pred actually. I mean the 80mg I was on last year played some tricks on my mind, but now with the second dose of 1000 I just feel a bit hyper-active. Got a bit over hour hours of sleep on Wed, and 5 hours on Thu. Maybe I'll be better able to sleep here at home. After tomorrows IV I guess its 80mg in pill form.

Thanks, I'm sure I'll be fine. The doc I had this week was so lovely, and really took her time to answer any questions I had. I think she is away for the weekend and another doc will be there next week too.

A bit worried about the Cyclo IV's though. Really not anything I look forward to... was so happy I could avoid them last year.

On the bright side I think I'll have a very nice sick leave if I don't get into worse shape than I'm now. I think if I could get a couple nights of sleep I'd feel wonderful. Well, not likely to happen when I'm on 80mg pred - lol.

The high pred can certainly get your mind racing and mess with your moods and thinking. I remember the euphoria was pleasant but the nightmares and paranoid delusions were worst experience of my life.

Have they told why they are going with IV CTX? My doctors told me the oral was generally more effective and easier to adjust daily for any adverse reactions to the CTX. There must be some advantage to IVs and reason for this choice for you. My guess is it is to get you up to a therapeutic level quickly.

I remember having some interesting ones that were very unpleasant, like needing to have a catheter for weeks and that took a couple years to repair (surgery to help empty my bladder and reduce my frequent bladder infections) but I think most people do fine with CTX IVs and don't have any big problems. CTX also tends to work faster than RTX so that should be reassuring for you. I started my CTX with two IVs too when i was really sick and needed help quick so that might be why they are recommending it for you.

Wegetarian

08-09-2014, 11:36 PM

Thanks Drz, yeah from what I read before CTX would be the quickest way to stop Weg's in its tracks. Guess it can takes several weeks before RTX kicks in. Not sure about the pill vs IV form. Heard today that they have second thoughts about the CTX, not sure about the details. The nurse just mentioned that they ordered it for me, but will still evaluate if they are going to use it. Did hear yesterday that my urine was a bit better, if I remember correctly the value that was 4000 went down quite a bit (Still way over the limits but going down). The results from my the computer chest-xray hadn't came on Friday when I asked, but perhaps they got it and the results weren't worrying dunno really. Just speculation from my part, but guess they must have some reason for second guessing the cyclos. Don't think I'll know more before Monday when the the urine results are in and I see the doc again.

Went today to get my third and last infusion of 1000mg's of Pred, only slept three hours last night and even after three cups of coffee I felt I could fall asleep when they put the drip on. Didn't take long for me to feel like the Duracell Bunny, lol :) Have to say that besides having my head feel like a giant light-bulb, you know the hyperactive feeling you get on high-pred, I didn't really notice much at all. Maybe slight melancholy. But last year when I was on 80mg I felt a lot worse, with frequent mood-swings and got easily annoyed (well still do get annoyed). I did manage to get a two hour nap at home, and feel real good. My throat had some white spots, and my uvula had expanded a bit - happens to me fairly often when I have the flu. Called the hospital and they said its enough that I come there tomorrow morning unless I start feeling worse. I have no fever or anything, and really nice to be at home with the family since its the last few days before their vacation ends (I'll have a long one, it seems ;))

drz

08-10-2014, 12:31 AM

White spots on throat can be signor esophageal thrush. There is another thread started recently on treating this as it can be another complication of having Wegs and its treatment.

annekat

08-10-2014, 01:29 AM

I hope you feel better soon, Dan, and are somehow able to get more sleep. Pred doesn't affect my sleep much, even at the oral high doses, but I've never had an infusion of it and 1000mg. sounds astronomical. I think that would keep me awake, too, not to mention how it would make me feel. As for oral CTX, I was very happy with how quickly it stopped the disease activity, especially in my lungs. Never had it by infusion.

Alysia

08-10-2014, 12:34 PM

oh Dan, I am so sorry :crying: only now I read it (being busy with Phil at the hospital)
mtx sometimes is just not enough to keep the wg-monster sleeping....
wishing you fast and easy recovery. sending prayers and hugs :hug1:

http://i.123g.us/c/gen_getwell/pc/118950_pc.jpg

Wegetarian

08-11-2014, 07:47 PM

Thanks for the well-wishes and the kitty-pic.

Right now they are prepping me for CTX infusion. Wouldn't allow me to leave for lunch as they wanted to start it early (there is a good Nepaleese restaurant 500m from here and I've always sneaked away for a lunch, the pred makes me so hungry and the hospital food can be... well... its hospital food).

Gone up 5-6 kilos since last Wed, that's like 1kg per day. Starting to feel the buffalo hump too.

The changes in my lungs appear to be from Wegs. Biopsy for the kidney now scheduled for Wed.

I feel real good, but have difficulty writing as I have this IV stuck in my right hand.

mishb

08-11-2014, 07:51 PM

I hope the infusion goes smoothly Dan and that you can get out of that place.

Worry about getting this latest bout of WG under control before stressing about humps and lumps - you've done it before and you will certainly knock it back down again

Wegetarian

08-12-2014, 12:12 AM

Yup, everything going good so far. The bag of cyclos is almost empty and zero nausea or other bad feelings. They did put something for nausea, and I got a friendly PM about asking for mesna to help prevent bladder issues (turns out they use something else here, but for the same reason). They also put a huge bag of water in me at first, and will put a second one after the cyclos.

The nurse even told me to stop drinking, I had lots of coffee and water in the morning and now with the IV's they don't want me to take too much fluids.

Called a friend and got him to agree to bring me some take-out and chocolate in the evening. So looking forward to it since the pred makes me feel like I'm starving.

The only downside is that they only serve ONE cup of coffee! Can you believe it? They bring it with breakfast and its not even strong. I did convince the to bring two cups with my breakfast tray, but like that would do me for the day. Last summer when I was hospitalized I realized they had a fridge for patients, figured they would have one here so I bought this cold coffee in one litre packs and go fill my cup throughout the day. Unfortunately its in the other wing and I don't want to lug this huge IV thing there, but this angel of a nurse fetched my bottle for me so now I'm getting my fix of coffee while getting a fix of CTX. Woohoo! Hooray for coffee!

Wegetarian

08-14-2014, 01:29 AM

So yesterday they said they'll turn me over to the Neph. department as the kidney involvement is the main issue now. They did take another X-ray of my chest, since the one they got weren't too clear and although it may well have been Wegs it could also be a fungus or tumor. I told the doc that it sounds good, and I realize Wegs doesn't protect me against any other disease so I appreciate that they check it it. Isn't it wonderful when you steal the words of a smart forum memmber, and then the doc now thinks I'm the smart one ;)

Also my weight went up about 7 kg in 5 days, obv liquids, but they wanted to make sure there is no liquid in the lungs as I developed a bit of a cough (I blame the pred).

They also wanted the biopsy from my kidney, but said they don't need to wait for the results since it should be apparent that they are involved but they want the biopsy for closer inspection so the plan was that I come today at 7am, have the biopsy at 9.30 and after 4 hours of rest I'm OK to leave the hospital. Well... it didn't go that well. During the biopsy they said that they'd like to take two samples, because they will have a much easier time analyzing them and if I don't feel too bad they will do it. I said I got some stomach pain from the cut, but its OK to take two. She noticed that there was some internal bleeding from the first cut and said she won't take another one.

They took some extra bloodtests to see if my hemoglobin was dropping, but my last test was a few days ago so they couldn't be really certain if it had dropped after the surgery or not and decided that I should stay here for the night and we'll check again tomorrow. I think I'm fine though, I mean they checked the bandage and it was OK and they monitored my pulse and pressure every hour but I'm cool with staying a bit extra. I really don't want to run up-and-down the stairs at home while wondering if I have some internal bleeding in my kidneys.

So with any luck I'll be at home this time tomorrow for good.

The plan is 5x cyclo IV's, then probably Aza. Heard that they initially planned pred for 1.5 years, keeping 80mg for a month and then 60 for two weeks. Man its gonna suck... I hate what high dosages of pred do to me. Well... I guess its relative... I mean it does wonders too.

annekat

08-14-2014, 02:14 AM

Sorry about all these ups and downs, Dan. I'm sure that a week or so in the hospital was the last place you thought you'd be this summer. I hope you are right that you'll get home tomorrow and be able to enjoy the rest of your sick leave, as much as possible, anyway.

Wegetarian

08-14-2014, 04:38 AM

Yeah... that's for sure. I mean I was so happy in the spring, I ate healthier and excercised regularly and felt I was starting to get to a better shape than I was before I got DX'd - although I did get fatigue quicker if I went say swimming. Was trying to taper down to 2,5 and was so excited that when I get there I'd be eating less pred a month than I did per day last Aug. Also figured I'd soon have some days per week with no medine to take.

But dunno, stuff happens. I sounds like I need to take a long sick leave which is a bummer for sure. They just took me for a sonogram on the kidney and it was fine now, so I should be able to leave tomorrow.

My roomie left, so I have this large hospital room all for myself and I'm gonna continue watching Star Wars from my laptop. Also found out they have free soda here if you know who to ask :) Everyone is really friendly so I just need to lie in bed, watch movies and eat some treats that me friend brought me on Monday. I dunno fi I can say this, but I'm really enjoying myself and I already asked if the nurses would mind not waking me up at night or morning so I'd get a good nights sleep. Mmm...

gilders

08-14-2014, 09:10 PM

Hope you're having a good day (well as good as possible). Let us know how your results go re: kidney biopsy.

Enjoy Star Wars and relaxing. Just remember to go for short walks occasionally, you don't want to end up getting blood clots.

Wegetarian

08-15-2014, 12:12 AM

Thanks, they released me already and I just came home.

Really bloated, went up about 8 kg in just 5 days. Its especially rough on the knees, and my underwear would make sores on my thighs. It seems to be going away though, since I lost over a kilo since yesterday. Quite exhausted too, guess the pred is running out.

The staff was super sweet and professional. I got this really elaborate list of which meds to take and when, where to call if something happens, times for appointments and labs. Last year they left me with no info, so its quite a change. Just feel like I got the best possible care they could have given.

Had some fun too, I bought 10 boxes of chocolates. They were fairly small, but looked nice enough that I could give them as gifts. Went to the hospital reception and sent one to my uncle who works here and offered some support and had taken me for coffee, then I asked to send one to the IT-department. The receiptionist was a bit surprised and were thinking that they don't really have an address to the Help Desk but they'd be happy to take it there. I told them the Internet connection had been fantastic and made my stay so much nicer. They were sure the Help Desk people will really appreciate it since they couldn't remember that no one had ever sent them anything before.

Then I took one box to the kitchen / cleaning crew. The lady was really surprised and asked if I really wanted to give it to them who are on basic duty. I said I appreciate they took good care of us, and she was almost in tears.

Then I took one box to the doctors office.

Then I went to the nurses coffee room, I said I only gave the doctors one box - but I'll give the nurses two boxes as they are the ones who do all the work anyway :D

LisaT

08-15-2014, 11:10 AM

Omg you are their dream patient for sure! I bet it helped in your healing process to make so many people feel recognized and appreciated for their work. Hope you continue to feel better.

gilders

08-16-2014, 03:07 AM

"Quite exhausted too, guess the pred is running out"

Probably not the pred running out - It was your chocolate deliveries that wore you out :flapper:

Alysia

08-17-2014, 09:25 AM

I am glad that you are home and getting better :hug3:

you makes me feel craving for chocolate :flapper:
please continue to update....

annekat

08-17-2014, 11:34 AM

Me, too, Dan... so glad you are home and that you had such great care in the hospital. I hope things will continue to improve and will stay that way.

Wegetarian

08-17-2014, 09:27 PM

It was your chocolate deliveries that wore you out :flapper:

Yup :) And the pred tells me now that I should have eaten all the boxes myself :D

My weight stopped going down, but I don't feel as bloated. I think I know exactly what causes it too. I blame the second night snack! When I go to bed at around 11pm I try to eat something light, like fruit - but when I wake up at 3am I'm craving for something a lot more filling.

Anyways, I feel quite good. The Pred makes me have constant mood swings and I can't even watch an action movies without tears in my eyes. My spouse tells me its like I was with those hormones you have when being pregnant.. Oh gosh, I hope I'm not pregnant!

I'm surprised the pred hasn't affected my mind more than it does. I mean last year I think I was a worse mess when eating 80mg. I did get really annoyed though when I realized that the pred they had me take was different from the one I had last year. I.e. I had an unopened box of 40mg tabs of Prednisolon, but when I was going to put my meds in my pillbox after coming home from the hospital I noticed the prescription said Prednison. I can't really remember how they differ, something about metabolizing differently maybe? Anyway, I callled the hospital and they said I need to get the right stuff so off the pharmacy I had to go the first thing in the morning. Being real stingy it of course annoyed me that I would have had a full box of 40's and 20's in my cupboard but now they will go to waste.

I get agitated much easier too, not much of a problem as I'm quite easy-going. But at nights when the kids throw tantrums it gets quite difficult to keep cool, which saddens me as I would like to spend more time with them but don't really have the energy.

I miss my hobby so much... I guess that's the worst part really. I never really got back after getting ill the first time, but did feel fairly confident in the Spring that I was going to be able to return. Once I got the Pred to around 10mg/day I think it didn't really affect my focus all that much, even though I couldn't remain focused for 6+ hours straight as I used to before I got sick. Now with the pred at 80 I realize that its going to be a very long time before I have any chance of being where I left off when I got sick the first time.

On the bright side I've never really thought it was so healthy to spend all my weekends glued to my computer, so for health reasons another hobby would probably be much better. I don't think I can focus on reading books yet, but I've watched a lot of movies and I hope to start exercising a lot once I'm not in such a poor shape. Right now I felt exhausted after a 10 minute walk outside, but I'll start slowly. I'm not allowed to go to the gym or swimming for a while, so I think it will be light walks and maybe some gymnastics at home for now.

Another thing I was thinking about was to try to help out some other people. Since I have ample time and still feel quite OK I asked if I could get some old laptops from my employer. I know we have some that aren't used, as they aren't efficient enough for high priced consultants. However I did notice in our local support groups that there seem to be quite a lot of people who have their finances tight, so perhaps they could use a laptop for surfing the web and and writing documents etc. Dunno how that will turn out, but if I get a couple from my company and if its not too difficult to erase all the confidential stuff and perhaps re-install the operating system then maybe it could turn out into something.

I'm also thinking about joining some online courses, to improve my skills. There is a course I've been wanting to take for 6 months, but with a fulltime job, kids and a hobby that consumed all free time it really wasn't practical.

Wegetarian

08-23-2014, 02:37 AM

Well now I'm getting a bit annoyed.. Since I left the hospital last Thu I've been quite OK. I mean I still feel a bit bloated and with the 80mg of Pred I get around 3-6 hours of sleep. Its not so bad in the mornings as after a double-espresso and the Pred I'm all hyper-active untill the early afternoon, but then I get quite exhausted. On the few days I've only slept 3 hours I do feel awful - but if I get 6 then I don't really have any complaints.

So anyway, I noticed my eyesight started getting worse. I guess this already happened in the hospital as they said they will get me an appointment with the ophthalmologist but couldn't get me booked before September. But now it was a bit more rapid, and I also had some blood in my eye-whites two times. So I figured I'd ask my doc if its urgent, and I also booked an appointment with an optician (at the local mall you get the eye-check and a pair of glasses for 29 euros, so figured if they'd notice anything really out of whack I could then go to the doc sooner). Well my doc told me to call the eye-clinic. I asked the nurse there if I could get the appointment for the doc I saw earlier, since he seemed to be the only ophthalmologist I've met who knew about vasculites. She was real nice and actually called the doc in question, and then she informed me that the doc suggested I come to the waiting room tomorrow at noon when they open.

Such a bummer as I was going to have the whole appartment for myself tomorrow (parents said they'd take the kdis for the day and my spouse is going on a work trip). A friend that I haven't seen in half a year would have came over too, so it would have been a fun day. Instead I'll spend the day at a hospitals waiting room. My son also has a fever now, turns out 5 kids called in sick from his class so I bet its quite contagious.

Oh well, I bought myself a pint of Ben and Jerrys, some candy and soda. I've tried to avoid the stuff and eat healthier, but figured today I have to treat myself to something extra as I was so looking forward to relaxing tomorrow with a friend.

Wegetarian

08-24-2014, 05:57 PM

So I went to the waitingroom at noon as they had requested. They had a note there from their specialist that said I had been sent there, so I was hoping it might speed things up. After waiting for an hour the nurse did a quick eye-check on me and told me that it will be at least a 2.5 hour wait, so if I want I can leave the hospital and return by 4pm. That suited me just perfectly, since I hadn't been in the city centre for a long time and had planned to go for a quite a while. So I hopped on the first bus and went for a walk. Felt a bit fatigued, and figured I could really use a cup of coffee when I noticed this tent which said something about impromptu theatre and coffee. The organizer noticed I was looking and asked me to come and enjoy the show and a free coffee, which suited me just perfectly. The impromptu performance was crap, but the warm coffee and a chair was real nice.

My dad was also in the city, so I called him and asked him out to eat - he was a bit busy so we agreed to meet in an hour which gave me time to go and check out some stores I had planned visiting. We went to eat some Chineese food as I know he likes it and I hadn't had any in a long time. Had I known the restaurant was so far away I might had refused as I was already a bit exhausted. The food was surprisingly bland, I demanded that the next time I shall pick the restaurant. Was a bit worried that I'd be late for the hospital, but figured they probably won't mind as they said the 2.5 hours was the minimum wait. Well when we returned it rained like crazy, and now they told me it will be at least 3 hours. My parents told me they would be happy to pick me up and take me home to rest, but I figured I might as well be there at the hospital - had prepared a ton of snacks and had my laptop filled with movies. Well after the 3 hours they told me there were still 4 people ahead of me, guess I was at such a low priority that all patients who came got to go before me. My snacks were also running out, didn't take into account that the Pred makes me much hungrier. Went a bought a pint of Ben&Jerrys since the kiosk only had some very stale looking bread (only one weggie option).

Tried asking if I could get a bed since I was real tired, but there weren't really any personnel around. Was wondering if the doc had went to the bar since it didn't look like there would be less patients even though new ones were no longer arriving. Well one old lady told me that the nurse had said we could use the hospital bed in the corner so I took that one. Didn't manage to sleep, but resting felt pretty great as they had surprisingly uncomfortable benches in the waiting room. Slightly after midnight the doc called me in, she was quite thorough and we discussed that it was good that I came over for a check (was a bit worried that they would just take a quick peek and throw me out and I would have spent the day unnecessarily at the hospital). It seems my double vision might have gotten a bit worse, at the edges of my vision I kept seeing her finger as two or bending into two directions. She scheduled me some tests for next Wednesday. The impaired vision is likely due to the Pred, the small amount of blood in my eyes didn't worry her - she meant that its similar to how Pred makes us get bruises easier. I asked if she saw any signs of infection in the eyes, and she didn't sound too sure but said that they should be OK. I also discussed that if the Weg would have attacked my eyes then I'd assume that my old glasses which I got last year when I was on high Pred probably wouldn't help as much as they do now, and she agreed. I also asked that is there anything one could do if there was an infection, as I'm already on real powerful drugs and she said she was thinking the same thing and there would be some local medicine one could apply to the eye, like cortisone drops. She said that I can freely come back if I notice my vision starts getting worse again, and said we'll keep my appointment for September as that is going to one of their top specialists (the doc I've seen there twice seemed to know about vasculites).

Granted the 12.5 hour wait was a bit long, but they day didn't turn out to be all that bad. I mean my son was in a high fever, so I would have had to cancel my friends visit anyway - and that's what got me down anyway since I was really looking forward to having the house by myself and just chilling with a buddy I hadn't seen in a long while. It was real nice to go around the city as I had wanted to do that for a few weeks already and it was very nice to go out for dinner with my dad even though he had to take a few calls and the food was crap. It does seem a bit silly one has to wait that long for a doctors visit, I mean why do they insist I need to check in at noon if they won't have any time anyway, but on the other hand if they think I need to see a doc then I don't really think its all that bad that I can see a good doctor during the same day. A lot of the patients who came in seemed to have much more urgent issues, like wearing black glasses and I heard one was crying in pain so I'm totally OK with all of them getting prioritised. I really loved how they told me I could leave for a few hours, since at the ENT's waiting room they were quite hesitant about letting me go get food which is so silly, I mean why force someone to sit at a bench for 8 hours. One old lady said they had promised her that they could even let her go home and call her one hour before her expected time. Was a bit bummed that they didn't say that to me, as I would have loved to go home and wait for a call as my parents could have dropped me off then.

When I left I gave my cookies and chocolates to the two pensioners who were still waiting for the doc. Those poor amateurs had no idea they were in for an all-day wait and had brought nothing with them. One of them had a two hour taxi drive home so I bet he was going to be hungry. Being well prepared I had packed my overnight bag with extra clothes, toothbrush and all since I'm just not so convinced I'm going to be sent home these days when I go to the doc. My cooler bag was even still cold when I arrived home at 1am, granted I already drank all my cold coffee drinks. Next time I'll prepare more food though, I had to go buy a lot of sweets since there weren't really any viable healthy alternatives at the kiosk. Didn't really consider the Pred makes me so hungry.

So tomorrow I'll go to the lab for bloodworks and urine tests, Tuesday CTX IV, on Wed they'll do the eye-check ups.

Today I'm OK'd to go down to 60mg Pred. yay! Hopefully I'll be able to sleep a bit better, I think I've averaged around 5 hours sleep per day which just isn't enough.

windchime

08-25-2014, 01:03 AM

What an inspiration that you remained so positive during your entire ordeal. Glad things aren't as bad as they could have been. :biggrin1:

Wegetarian

08-26-2014, 11:26 PM

What an inspiration that you remained so positive during your entire ordeal. Glad things aren't as bad as they could have been. :biggrin1:

Well the weird part is that I feel so good... Like I was working the few days while I was waiting to go to the hospital, perhaps a bit more tired than usual but not sure if it was due to the Weg attacking me everywhere or due to the stress of knowing that everything is not alright and having to go to a hospital ward.

Monday was rough, I only got 2.5 hours of sleep - woke up before 3am and had a lab appointment at 9am knowing that I wasn't allowed to eat before the lab. And the high pred makes me hungry. I checked that one lab opens at 7.15 so I went there a few minutes early, only to realize there were already 12 people in the cue. Still I won a few hours and the thought of getting my morning coffee a bit earlier. Man I was hyperactive after not sleeping and taking the 60mg of Pred. Ran some errands and did some shopping for 4 hours and then crashed into bed but couldn't sleep. The days I get at least 6 h sleep are quite good, but I do feel so awful if I get just 3 or so. Just discussed with my doc that I could take another sleeping pill if I don't need to drive in a few hours. (I take the kids to daycare and school in the mornings)

This night I had my best sleep since I got admitted to the hospital, about 7 hours. Felt so relaxed in the morning. Went for an awesome lunch with a good friend of mine. Such yummy Nepaleese food and a good discussion. He left his business meeting in the middle to make our lunch appointment :D

Right now I'm at the hosptital getting my second Cyclo IV. I've been making a lot of calls and lists of stuff I need to do, as I have ample time here so why not make the best of it. Wasn't sure what to expect, as the last IV took about 9 hours so I packed a cooler basket fileld with jogurts and other snacks - but when I got here I realized that most of that is pretty much liquids and they've told me to restrict my liquid intake to two liters... doh! Anyway, they just brought me a decent sandwitch and coffee so it looks like they'll feed me here. I also have with me a chapter from a book about vasculites that I like about Opthamologic issues with Wegs. I have an appointment for eye-tests tomorrow, so figured I'd brush up on what all Wegs can do to the eyes.

Next week is going to be fun, have three lunch appointments which is great as I'm usually full of energy until the early afternoon. Then there is our companys summer party. Not really sure about the party, I'd so love to go but I've just been so exhausted at nights :( Also last year I almost fainted when I got home from the party, so it feels a bit awkward to be in pretty much exactly the same spot at last year - just started chemo and more tired than usual. This time its in an Island so you need to go by ferry and it can be a tad difficult to get home if I start to feel bad. Of course I won't be there till the wee hours, but dunno how easy it is to leave at say 10pm... Should probably check in advance...

Feel so bad about Phil and what he is going through :(

Yesterday I heard that a vasculite friend got some good news about her condition getting better, and that she should be able to try to get a second child in a year or so. It made me so happy, since I know she has gone through such rough times.

Wegetarian

09-10-2014, 07:16 PM

Felt a lot worse the last few weeks. Came down with the flu, which was hardly surprising as both my kids had a high fever so I figured its just a matter of time before I get it. Got the slimiest couch I've ever had, sleeping was already hard due to the pred but the cough made it worse. Called the doc just to be sure, didn't have a fever and was feeling pretty OK but I didn't want to get a pneumonia or similar while being on high pred and Cyclo IV's. The doc ordered blood tests, chest- and nasal x-rays and called me the next day that I have sinusitis and need to take antibiotics. Was supposed to have my 3rd Cyclo IV yesterday, but we postponed it for a week so I could get better and take the antibiotics.

Was so hyper-active each morning before the flu, but after that I've been feeling quite exhausted all day. Today I finally feel better, the cough has also ended. Managed to get 4.5 hours of continuous sleep which I think might be a record since I came from the hospital. Generally I feel that the pred doesn't affect my mind as much as it did before, which is great as I've been able to do some reading now. If all is well I'm supposed to cut down to 40mg next week. I sure hope they let me do it. We also discussed with the doc that I could start swimming then (she kind of thought it was OK already, but last time they wanted me to wait until I got to 40 - might have been because of my the wegs in my nose though).

Had a weird thing at the hospital though. They discovered the Weg activity from a bleeding thingy in my throat. I was supposed to have an appointment with my ENT next week, and my neph thought that it would be great to keep that so that they could check if its better now. Then I got a letter from my ENT, who was my responsible doc for the entire Wegs, that she has moved the appointment to Feb 2015. I called the hospital but they refused to tell me anything else than that the ENT moved the appointment and said it was for a good reason and I'll get a note about it. Didn't receive anything, my neph thought it was strange but said they can't do anything if the doc moves the appointment. Called them again and now I got a promise that my ENT will call me next week. Dunno, just feels weird that they do that kind of things. I know she received the info from my hostpital stay, and she should also be aware that I had that thing in the throat as she called me before I went to the hospital.

Wegetarian

10-31-2014, 03:54 AM

Just had my 5th CTX IV today, all the lab results show improvements and the doc said there is no longer any blood in my urine which she said was a great results (although I checked the lab results and the most recent test had some blood, while the one before that didn't). Still some protein though, the doc said they'd switch my blood pressure pills to another one that also helps against the protein and that it might be due to some scarring of the kidneys so the protein might be remaining.

Initially they had planned 6-10 IV's, but in the latest note from my doc I read that they were thinking of 6-8 and now we discussed that 6 might be enough as that's what they consider the minimum amount to be, but they'll book a 7th IV and depending on the results after the 6th we'll check if its needed or if we'll switch meds.

ANCA was down to 2.2, it was 27 I think in Aug and CRP was down to 3 so they are pretty much down to normal. Creatine levels have also been within normal for the last few blood tests.

Again down with the flu.. Was a bit worried as this is the third time I feel flu-like before going to the IV, like if the meds aren't frequent enough or something, but then the rest of the family came down with it too - so I guess its just a coincidence.

Before my next IV they'll also take chest x-ray's to see if my lungs have improved.

drz

11-01-2014, 03:50 AM

Sounds like good care and progress in controlling the Wegs. Hope it continues for you.

Psyborg

11-01-2014, 12:54 PM

How are you feeling now? Better hopefully? When I was on CTX I felt kind of crummy in a different way so I twas hard to tell if I was feeling better a t times.

Wegetarian

11-10-2014, 10:31 AM

Yeah, they take such great care of me. I kind of worry though that our country will have to cut down on a lot of services due to the economic situation. I mean its so very expensive to take care of us wegs, so I wouldn't be surprised if they would need to cut corners. Right now I can't imagine they could take better care of me though.

How are you feeling now? Better hopefully? When I was on CTX I felt kind of crummy in a different way so I twas hard to tell if I was feeling better a t times.

I'm feeling quite great. Almost as good as when I was taken into the hospital. I mean I didn't really have any symptoms, and was working they day before I checked into the hospital.. The pred however affects me quite strongly, and got very tired moody etc - you guys probably know all about that though.

Next week I'll be able to cut down my dose to 20mg from 30mg (although I kind of cheated, and started taking 25mg this Friday and figured I'd do that to next week so the total dose would be the same, but increments would be smaller).

Went swimming 4 times last week, I do feel I don't have the energy I had before I was dx'd and obv the high pred and fatigue has had an impact too. Figured when I get my pred to 20mg I'll also start going regularly to the gym, and should start to be in a better shape soon.

I'll have my 6th CTX IV in two weeks. The nephfrologist actually seemed a bit surprised that my kidneys had recuperated so well, my crea-levels were already within normal and there was no blood in one sample and just a tiny bit in the following weeks lab sample. There are still some protein, and that might be something that remains though due to kidney scarring from the infection. Haven't noticed anything from the CTX besides that I had some minor pain when going to the bathroom and had some hair stuck to my fingers when shampooing my hair.

Initially they said I'd have 6-10 IV's, but the doc figured they'll book me a 7th IV but depending on the tests they might cancel that but wanted to reserve the time just in case.

After that the current plan is to move to Aza. Being a geek I read that there is slight possibility of bone marrow poisoning, or something similar. This could be avoided by a cheap blood tests that checks the gene activity for the pair that breaks down that drug in our bodies - but that test isn't part of the regime they use, instead they rely on regular blood tests. I'm trying to make them take the test before I'm put on it though.

Also just read a summary of a recent study that almost 30 percent of people who were put on Aza after being put on remission through CTX flared within about 2 years, while the corresponding number was 5% with RTX. Didn't even last a year without flaring after being dx'd, so I'd certainly hope that I'd be "healthy" for a bit longer than two years after my CTX infusions...

But yeah, can't complain at all. Everything seems to be going well, haven't been in pain or anything. Pretty much just the side effects of heavy Pred dosages, and general fatigue. If all goes well I should be on 10mg in 5 weeks and if I can work out as regularly as I have planned I think I should feel normal by then.

Wegetarian

03-11-2016, 09:06 AM

Whats up guys?

Haven't updated this in a while, been feeling good and when I do I rarely check up on Weg stuff. Although I've been thinking about you guys from time to time and figured I should come by and say hi :) Although now I came to check if I can find any new info on Wegs. Signing up to go to a spa next month where they hold this conference for Vasculites here in Finland. So there will be a lecture about Anca-vascuites from one of the top-docs and some other stuff.. First I figured I wouldn't go, but then I realized a buddy of mine lives in the city where the conference is and he said he'd be happy to go out for some beers so I'll go. Its really cheap too, since its subsidized - its 50 euros for a night in the spa hotel, all the meals, and the programs. I'll pay some extra though to get my own room. Travel seems to be fairly cheap, since the train company has some sale so its just 10e per trip.

Healthwise I'm feeling fine. Dropped like 17kg since the fall of 2013 and about a third of my fat-percentage. I'm off predinsone since about a month ago and only taking Aza + blood pressure med. I do think the blood pressure med isn't needed, as I've never had a high blood pressure but the doc wanted me to take them for now just so that the kidneys would have it easier. My last lab results have been great, haven't had any blood in my urine and now didn't have any proteins either - which I guess even surprised the doc a bit. Back when I maxed out scale they use for both blood and protein they figured my kidneys would become better but unsure by how much so it was definitely a very nice surprise.

Almost forgot, I was also at some cosmetic surgery. I had this roscea (I think that's what its called), so like red zits on my nose and annoying red veins on my nose. The skin doc said it could be easily treated with a laser. Sounded really cool, so I couldn't give up the chance to be lasered.. Worked out great, all the red stuff disappeared even though my nose looked quite funky for over a week after the procedure.

But yeah.. that's about it.. Still at home though, but looking for some interesting work.

vdub

03-11-2016, 09:47 AM

This is good news! Its kind of the nature of the forum to have people leave when they are feeling well and come back when things go astray, but I'm glad you checked in and let us know how you are doing. I'm glad the laser procedure worked out, too.

mishb

03-11-2016, 11:17 PM

This is certainly great news.
I love the idea of the spa thing. I'm glad you are going again.

My doc also has me on bp tablets to protect my kidneys. Since we are in different parts of the world, I guess this must be a common practice.

Thanks for keeping us updated

Wegetarian

05-05-2017, 10:14 PM

Been meaning to come by for so long... So much has happened. I guess I could give you guys a brief recap.

So my relationship with the mother of my children hadn't been all that good for a long time. I think my health issues was kind of the last drop. I think I mentioned before how I felt she turned her back on me when I got wegs. I mean just a little bit before that I had brain surgery, which was a very stressful time for our entire family - and when I got past that she was so relieved and felt it took all her energy but was happy to think that all was then well.. Well ofc it wasn't as I was immediately diagnosed with Wegs and had another long sick-leave and was in a quite bad shape as I was still weak from the surgery. I think we became more like roommates then and started to drift apart. In the fall of 2015 she wouldn't really want to spend time with me, and I couldn't get her to go out on dates with me anymore even if I'd get a baby-sitter for us. In March 2016 she stopped talking to me, and walked around the house with earbuds on, and behaved quite badly towards me. I told her that if that won't change then we will have to break up. I knew she hadn't been happy with the relationship for a long time, but I tried to get her to go to counseling with me for a few years, but she always refused. Well, she decided that we should rather break up in the coming July, as our children would have their summer break from school and we'd have our holidays so it would be a lot easier from a practical perspective.

The weird thing is that while I felt fairly content in the relationship, like yeah - I wasn't happy and the romance was gone. Still a few weeks after the break-up I realized how bad the relationship was, and how much better I felt being alone, even though I didn't really like my new apartment that much and felt quite lonely. Like I used to have a lot of friends, but then with the spouse and kids I always felt I had so much to do and so many people around me that I didn't really miss seeing my friends that much. Not to mention that it was quite a hassle to meet them as they had families of their own, so seeing them a few times a year felt enough. I was also unemployed from the fall of 2014, so had a bunch of time on my hands. I guess I mentioned it before, but I got a fairly nice pocket money from playing online poker. So financially I was OK'ish. Unfortunately my passion for poker was gone, and also the mental stress of the break-up made it hard for me to focus.

Fast-forward a few months, and I met a really nice woman. Things moved a long really fast. I had my childern at my place a few days per week, and every second weekend. Since I was going to have the childern for two weekends in a row (we swiched so my ex could have a B-day party without the children) I suggested to the girl I met that we could go on a short trip somewhere, if she didn't think it was too sudden. All my life I wanted to travel with a girlfriend, but never really done that - as my ex always had a reason why she couldn't go. So she said that would be great. I was thinking about just a weekend trip to some nearby country - but she suggested we could go to the Canaries for a week. I thought that would be really awesome. We looked at some trips, and she noticed that you could get a last minute trip to Thailand for almost the same price. I was immediately sold on that idea too, as I've never been to Asia. So we bought a trip even though we just known each other for two weeks. Was a real awesome trip, easily the best one in my life - even though I got a nasty flu at the end of it. We did also go to the Canaries, but that was in Feb this year :)

So anyway, I was real happy. Had a nice girlfriend who gets along fantastic with my kids and has a good heart. I had been looking for jobs, but wanted to find something that I'd really like. The long gap in my CV didn't really help. Anyway, I found one that seemed good - and managed to get it. Started working last month. The work seems nice, and its in a perfect location. Like if I have the kids, then I can drop them to school on my way to work, and its less than a 20 min drive from my home and they have plenty of parking.

Now the downside... Remember that flu I got in Thailand? It continued for a while when I got home, and at the end of it I noticed I was coughing some blood. Obv I went to the health care center, and they took some x-rays and said its nothing to worry about and should end soon. After a few weeks I called my doc, and they took new pictures. In February they still weren't sure if it was anything - as it seemed those original changes were smaller, but something new had came. Just to be sure they upped my medication a bit, and ordered new x-rays for April to see if it would help. Now last Monday I got a fever, thought it was the flu. Had my doctors appointment for Tuesday so it was quite convenient. The doc said the knew x-rays showed more changes and that I was still coughing some blood wasn't good, but the nefrologists didn't know how to interpret those so they would send me to the lung department ASAP. They would have wanted to give me some pred, but figured it might make it harder to take new x-rays. She also called them after sending the info so that they'd take me at the earliest possible time. She said that if the fever didn't go down I should go to my workplace doc in a few days to make sure it isn't pneumonia, and if it continues to Monday then get back in touch with them.

On Wednesday I was feeling a bit better, although sometimes really fatigued - but was thinking I might do a short day at the office on Thu as I no longer had a fever. But then late on Wed evening I started coughing up a lot of blood, and especially so in the morning. I immediately called my doc (they have a time from 9-10 in the mornings when I can call the nurses). And discussed I need to get in touch with the lung department, and that they'll call me back in case I can't get through. Was told I needed to come to the ER. They took a bunch of tests and took me into the hospital. They wanted to give me the 1g of pred in my veins, and said its preferred to give it in the mornings, but in my case they think it would be good to start it right away (was about 22:30). Could really have used a good nights sleep, but of course I agreed.

This morning the doc came for a visit, and said that the X-rays and tomography (how should I spell that?) scans showed stuff that would correlate with wegs and the bleeding, so they want to give me 3x the large pred doses, then orally and on Monday they want to start with cyclo-infusions. They said it would be fine, as my cumulative dose is still quite small. They also said I'll need at least one months sick leave.

Really sucks... This weekend was also my weekend with the kids. My mom dropped me off to the hospital and the children were with us, but didn't really know what to say as I didn't know what would happen either. Anyway, my mom and my girlfriend promised they'd help taking care of the children (their mother is on a trip for the weekend).

But yeah... not at all happy that again I've got everything sorted out nicely, and then the rug is swept under my feet. Before this I think I was in the best shape of my life. Like before wegs I weighted around 102kg, but it didn't really bother me even though its borderline obese. When I got sick I went up 15kg, dropped it off before the relapse. After the relapse I started paying attention to what I eat, and exercise regularly and got my weight down to 82 kg, so 35 kg less than what it was at most (77lb for you yanks). My goal was to start lifting weights regularly (been a bit lazy with that) as I was happy with my weight, but the pred and the weight-loss had also made my muscles smaller.

What a long post... Prednisone does make me very chatty :D

annekat

05-06-2017, 06:53 AM

Thanks for the update, Wegetarian! It was interesting reading. Sorry Wegs had to rear its head again, but I imagine you'll pull through it. Nice to know about the new girlfriend.

Sent from my MotoE2(4G-LTE) using Tapatalk

Alysia

05-06-2017, 02:43 PM

Welcome back, Dan. I love reading your thread, some great posts from the good old days with my sweet Batman. I am also allways grateful to you for your kindness to him on his last weeks on earth.
Thank you for the update. I am glad for your new girlfriend and job.
Sorry about the wg flare. Have you being on any maintenance meds while it started ?
Sending prayers for fast recovery and back to remission.

Wegetarian

05-06-2017, 10:21 PM

Thanks :)

Yeah, third times the charm... So this is like routine now anyway :D Besides, I was probably in the best shape of my life before I got this new flare - so hopefully I will be in a bit of a better condition when I get through the worst of it - and could continue working soon. Was told I'd need at least 1 month sick leave, but they want to have me on 80mg of pred when the 1g impulses are done, so I take it it will take over a month to get to amounts where I can think properly.

Now at home for a few more hours. My son has had quite a temper the entire morning, and the pred causes me to loose my temper real quick - so unfortunately not all that relaxing.

mishb

05-12-2017, 08:54 PM

Great update Dan,

A lovely lady, some fantastic holidays and a new job. Just sucks that the WG dog is not co-operating as he should.

Can you take one months leave from your new job? I hope so.
Hopefully all of the med increases will get things back under control for you

Wegetarian

05-23-2017, 06:02 PM

Hey mishb,

yeah - no problem with the sick leave. Was a bit worried though, as I was just doing some training for the new job - and hadn't started working in a project yet when I had to tell them I'll be away for a month. Although I haven't worked in a project there I've got a ton of good feedback, since I helped out with some things whenever I found something I could be of use in.

Feeling real good, the only thing I notice are the side effects of Pred - which I guess everyone here knows by now. I.e. hard to sleep and difficulties in focusing. Real happy that they allowed me to go down quick on the dosages. When I got out of the hospital I was on 80mg, then after a week 60 and after a week to 40 (which is now) and this Thu I should be able to cut down to 30mg and after two weeks 20mg. But I'll see the doc today so might get more up to date info. My sickleave ends in the beginning of June, which is slightly before I should be able to take 20mg. I'm a bit worried about being to work with 30, as the last time I kind of felt 20 was the limit where I could do something productive as I usually need to focus a lot when working, and even at 20mg I felt my short time memory was bad and could have some trouble concentrating. At 15 it was OK, and at 10mg I didn't notice anything...

The weird thing is that I don't think the pred and wegs affect me nearly as much as during the last two times Wegs hit me. At first I was thinking it was because I was now is such a good shape when I got the relapse that it was easier on my body. But later I started thinking that before I always felt that I needed to go through these health issues alone, but now I have my girlfriend who has been very supportive (she even insisted to come and wait with me in the ER when I was there for hours). I think that is a big factor in why it feels it has gone so easily this time. Also, its a very nice feeling to be in love :)

But yeah, everything seems to go smoothly health wise. I stopped coughing blood, so the meds seem to have done their thing. Still booked for one more cyclo-infusion, and probably will be scheduled for more of them. Work wise I'm a bit worried, even though I managed to get a permanent contract it has a 6 month time when they could fire me immediately without a reason. My boss told me to try to get well as good as I can, and not stress about work while I'm on sick leave (although I'm still gonna take some courses which will help me at work, and try to participate in some meetings remotely as I would really like to work). On the downside we had agreed on me taking 4 weeks of vacation for the summer, but she quite frankly said that it wouldn't be a good idea as I'm already gone for so long - and I would have a two week vacation a few days after my sick leave ends. She said it was OK though that I'd take one week, as I have a vacation booked where I'm taking the kids for a week to a spa, and my girlfriend will be joining for a few days too. Managed to get a subsidized vacation there, which should also be very fun as they have a lot of activities planned for the children.