Hello from Europe 2 :)

[Wegetarian]

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

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

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

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.13333653^–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

A suggested regimen is oral methotrexate 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 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]

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.c...lo-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]

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]

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. 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]

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]

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.

[Barbara N]

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. 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.

The vasculitis Foundation here in Spain has started a center like that. It is 100% free to people with vasculitis related illness and it is a luxury spa with everything include, you just have to get there and they pay all the rest. It is in Bilbao. The other side of the country for me but you can stay up to 10 day and it is for your family to relax as well and down stairs they have a complete medical facility including physiotherapist ENT Ophthalmologist, well every kind of Doctor you would want to see, all specializing in vasculitis type disease and auto-immune. I thought I would apply, it might be a nice get away for my husband and myself while being able to see qualified professionals.

[jvilner]

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

[Alysia]

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]

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


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