Positive nasal biopsy [Archive] - Wegener's Granulomatosis Disease GPA Support Forum

gilders

09-28-2013, 03:11 AM

Hello everyone. For those that have read my posts, you've probably read my current situation. I have had a positive ANCA for the last 11 months. I've also being suffering with symptoms that would suggest a relapse. Most of you have given me the impression that I should be back on treatment. I had my reasons for holding off on the treatment, mostly due to renal issues, but in this case I think you were right.
The exact words from the email my specialist sent were "The biopsy has come back showing likely Wegeners!"
I guess "showing likely Wegeners!" isn't definitely Wegener's, but with my symptoms and positive ANCA, putting off treatment any longer would be risking it too much!
I'm due to see him next Thurs morning. I'll keep you all updated.
We are all different, but when I have a relapse my kidneys have received further damage each time. My Dr has told me that 1 more relapse would be the end for my kidney's. I can cope with WG and it's treatment, but going back on dialysis until I receive a transplant is something I'm going to find very hard to deal with.

I've not resigned myself to losing my kidney and will fight all I can, but I'm also facing up to facts!

annekat

09-28-2013, 03:27 AM

I'm very sorry to hear this, gilders. Do keep fighting, along with maintaining your realistic attitude! I'm hoping the treatment will not be as damaging as you might think..... or that your disease activity is not as high as to warrant the most damaging treatments..... I can only hope. And we will all be thinking of you, no doubt, and waiting to hear more. I wish the best possible outcome for you.

Wegetarian

09-28-2013, 07:03 AM

Truly sorry to hear. Luckily I know your a tough mofo. I understand it must be a very stressful time for you, and I'll keep my thumbs up for your on Thursday. Keep us updated Gliders.

gilders

09-28-2013, 07:59 AM

Thank you both. Hopefully I'll still be able to go on my 5 day Scotland vacation that I'm due to go on the Sunday after my appointment.:confused1:

Titus3:2

09-28-2013, 10:01 AM

We are rooting for you,and hope that biopsy is not positive after all.

Alysia

09-28-2013, 07:11 PM

Hi Gilders,
I am so sorry that you are going through another hard time :hug2:
but you are wg-veteran and you do know how to fight it :cool1:

my c-anca was positive for years. (while "smoldering") so it should be alarming to treat but not too scary.
Is there any immediate risk to your kidneys now ?
RTX helped me like a miracle. asked your doc about it.
I am sending you my praying and wishes to feel better soon.
please update us.

gilders

09-28-2013, 07:32 PM

Hi Gilders,

Is there any immediate risk to your kidneys now ?
RTX helped me like a miracle. asked your doc about it.
.

Hi Alysia.
I will probably have more answers on Thursday when I see my Dr, but going on every other relapse I've had, then I predict that my kidneys will not survive another flare. Having said that, this relapse has been different to my usual relapses. Usually at the onset of a relapse my health (and kidneys) deteriorate rapidly. This time it has been a slow build up over months, with a more rapid progression over the last few 5-6 weeks. It has also not effected my kidneys as yet, so perhaps there is still hope for my kidneys if I respond quickly enough to treatment.

As for RTX I've already spoke to my Dr about it, but he doesn't think he can get funding for it. I know other area in the UK have access to it, but I don't know if I'll be able to get treatment in another area? My sister did say she would help out with any medical expenses, but I think she was probably expecting £100's rather than £10,000's.

gilders

09-28-2013, 07:33 PM

We are rooting for you,and hope that biopsy is not positive after all.
Thanks Titus3:2.

Alysia

09-28-2013, 07:57 PM

Hi Gilders,
if getting rtx is only a matter of money, then check this link
Insurance and Co-pay Coverage - RITUXAN® (rituximab) (http://www.rituxan.com/ra/patient/insurance-copay/index.html)
I got it from me2 when I was afraid that the health service will not pay for it. it is in the post of me2 in page 2 of this thread
http://www.wegeners-granulomatosis.com/forum/off-topic-discussion/2941-hostage-bureaucracy-2.html
I know that in Isarel there are also some research programs who give RTX for free, but for diseases other then WG.
In Isarel, according to the "national health law" RTX is included in the "health basket" for wg (they prob though there are not many weggies in Israel that will use it).
maybe there is some law about it in UK ? or some research program ?

mishb

09-28-2013, 10:07 PM

gilders

09-28-2013, 10:55 PM

Aww Gilders, I'm sorry WG may have taken hold again

I'm struggling though, to understand why you wouldn't want to start on some treatment straight away, if, everytime you relapse, your kidneys get worse.
Wouldn't it be better to start the meds so that your kidneys have, at least, a fighting chance ??

Hi Michelle, let me explain why I was putting off treatment.
Firstly if there is definitive proof that I was having a flare/relapse then I would not hesitate in receiving treatment.
The reason I wanted to hold off treatment was when I wasn't 100% certain that I was having a relapse. The reason being that if the meds can damage my kidneys, I'd hate to think that I've killed off my kidneys with medication that might not have been needed.

With my symptoms and positive ANCA results, it was always likely that I was at the start of a flare. I truly believed that the only chance my kidneys had was if I kept off meds and weren't having a relapse, however unlikely it was.

I never refused treatment, but I did let my specialist know that I wanted to re-start treatment when there was proof of a relapse, not just signs and indications.

mishb

09-29-2013, 12:00 AM

I thought you said that any relapse hit your kidneys worse - I didn't realise that the meds were also making them worse.

.........so you are in a no win situation, either way - now that just sucks.

I'm sorry. I hope you get a definative answer when you see your specialist

gilders

10-01-2013, 07:31 PM

Just 2 more days until my appointment to discuss positive nasal biopsy and I wish it would come sooner. My mind set has changed from hoping I wasn't having a relapse, to realising the truth and wanting to get this flare beaten down before it causes too much damage. It's been a slowly building relapse which is so unusual for me and I think that's partly the reason why I wasn't 100% sure I was having a relapse. But the last few weeks and especially the last few days, it is becoming much more aggressive.

I now have another issue. I believe I will be back on treatment in the next few days, but I've picked up another virus. I'm not sure how they are going to treat me considering treatment is to immuno-suppress me which will let this new virus run riot. I guess my Dr may have to postpone treatment until I've fought off this virus. The problem is when I get a virus it usually takes a month to get rid of. I can't wait another month now that the WG are getting so much more severe at a rapid rate now. :confused1:

annekat

10-01-2013, 08:46 PM

Titus3:2

10-01-2013, 10:09 PM

Hi Gliders, I am sending good vibes to you,and keeping you in my thoughts. You are a Gladiator.

gilders

10-02-2013, 01:47 AM

I'm very sorry to hear all this, gilders. If this is a relapse, they need to knock this out. I wonder if the virus would make much difference, since you have it anyway. I wish there were more obvious answers on how to proceed without making something else worse. I also wonder if you could get RTX via the link Alysia shared above. I'm afraid it would take awhile for it to make you feel better. I am so sorry about the precarious state of your kidneys and wish this disease would not be so unfair to some people while letting others off relatively easy. My thoughts and prayers are with you. I hope to hear some more positive news soon.

Thanks Anne. It was very kind of Alysia to go to the effort of posting the link for RTX insurance co-payment. I can't see how that can work in my case though. The only "insurance" I have regarding health and medical is National Insurance which pays for the National Health Service. It is possible to get health insurance in the UK which pays for private health care, but the problem is that no policies cover pre-existing conditions. I started work at 16 and wanted to join the health insurance scheme that was offered through work, but there was a minimum age limit of 18. Unfortunately WG started when I was 17 and as almost every organ was involved there hasn't been an insurance policy worth investing in.
I really wish I had enough money to pay for health insurance policies for my children. They would think what a boring gift and prefer I'd spend it on anything made by Apple, but the way the NHS is stretched to breaking point, I'd get it for them. We've just helped our 21 year old through 3 years at Uni as best we could and it won't be too long before out 16 year old will be going.

As for the unfairness of this disease, I know it's hit me hard, but it could always be worse!

gilders

10-02-2013, 01:48 AM

Hi Gliders, I am sending good vibes to you,and keeping you in my thoughts. You are a Gladiator.

Thanks Titus3:2.
Where about in Florida do you live? I got married on Clearwater Beach a few years ago.

Wegetarian

10-02-2013, 02:35 AM

I really wish I had enough money to pay for health insurance policies for my children. They would think what a boring gift and prefer I'd spend it on anything made by Apple, but the way the NHS is stretched to breaking point, I'd get it for them.

I was going to cancel our childrens insurance policies this spring but then decided to wait a while yet, I got them before they were born and the first years were a bit expensive (like 500 euros / year). Now when my son is 8 years I think the insurance is only about 200 euros so its not too bad. The problem is that my spouse has been handling the bills and she never remembers to send them to the insurance company so I end up paying for the doctors and meds in addition to the insurance...

But I am starting to agree that its a good thing to keep the insurances, I keep hearing how they are cutting the public health care so dunno how much care they would get from there. Not sure if I'd use the public health care system anyway for the children, since waiting for 5 hours could be a bit tough for them. Its just that if a doctors appointment costs about 70 euros and the medicine maybe 15 euros on average then we could see a doc 3-4 times a year for the price we pay now and we very rarely need to go that often.

annekat

10-02-2013, 03:28 AM

Gilders, it was convoluted, but on the Gentech website I found this page talking about a way for people to get their RTX for free if they can't get it any other way.

Genentech® Access to Care Foundation (http://www.genentech-access.com/rituxan-gpa-mpa/patients/find-patient-assistance/access-to-care-foundation)

I know it sounds too good to be true and would be a lot of hassle to apply, etc. I think it said there was an income limit of $100,000 a year unless that was for a different program. You might just check it out.

I think it is rotten that people can't get insurance because of pre-existing conditions, and I'm dismayed to hear that the national heath coverage in England is not working for you. This has of course been a problem in the US, too, for people with serious diseases. I don't have a lot to say about the new health care law that is having so much trouble getting acceptance here, except that I think it is good that it mandates coverage for people with pre-existing conditions. I don't know what the repercussions of that will be, though, in terms of higher rates, etc. I just think we as human beings should be able to take care of each other better than we have been and people with serious and life threatening illnesses should be taken care of properly no matter what. That is just my sentimental and uneducated opinion, and should not be a catalyst for any sort of political discussion on here. Just sayin'.......

Alysia

10-02-2013, 04:04 AM

Hi Gilders,
I am sorry you got that virus too....what kind of virus is it?
I hope your doc will have good answers for you and good treatment. you deserve to have some peace.
Insist with your doc on checking about research treatment and the like, that give treatment without payment. there might be some.
I am sending you my praying :hug1:

gilders

10-02-2013, 10:41 PM

gilders

10-02-2013, 10:47 PM

Hi Gilders,
I am sorry you got that virus too....what kind of virus is it?

I went to see my GP a few days ago and he just said it was a virus. It's probably not a serious one for an healthy person. Even though I'm not currently taking immuno-suppressants I find that a 24hr bug for an healthy person takes me about month to get over. If my Dr immuno-suppresses me in the next few days, then I'll have no immune system to fight this virus off. It is similar, in a way, to people with AIDS. Nobody has ever died from AIDS, they die from a virus that their immune system can't fight.

annekat

10-03-2013, 03:02 AM

Thanks Anne. We certainly have an income well below $100,000. I've read through the forms, but it asks for Social Security numbers, zip codes, etc. I don't think it's for people who live outside of the US. I will take some print outs of it to my Dr to see if he thinks there may be a way to use it to our benefit.

My sister said she would help with any medical bills, but I think she was thinking of hundreds of pounds, not tens of thousands of pounds. I'm thinking that a lot of times those forms, etc., aren't perfectly designed and can't be filled out by everyone the way they are, as regards to the SS#s, zip codes, etc. I mean, not everyone in the US even has a SS#, I don't think. It's hard to imagine they would make this available only to people in the US. I'd call or email the company and ask them. Maybe there would be just be different info they'd want from someone in England. Maybe your doc can help you sort it out.

annekat

10-03-2013, 03:14 AM

I went to see my GP a few days ago and he just said it was a virus. It's probably not a serious one for an healthy person. Even though I'm not currently taking immuno-suppressants I find that a 24hr bug for an healthy person takes me about month to get over. If my Dr immuno-suppresses me in the next few days, then I'll have no immune system to fight this virus off. It is similar, in a way, to people with AIDS. Nobody has ever died from AIDS, they die from a virus that their immune system can't fight. A lot of us take Bactrim, or another brand name such as Septra, or the generic version of sulfamethoxazole, an antibiotic that protects against a certain dangerous pneumonia that most people can fight off unless they are on immunosuppressants. This is one of the things that I've heard AIDs patients can get and die of. I'm sure you probably already know that. I wonder how many viruses are really severe enough that people can die of them. Maybe a lot, for all I know. I think unusual infections in general might even be more dangerous than viruses, though I don't know much. I just know that people we knew on the forum have died of massive blood infections that took over their bodies and they couldn't fight off. Yes, I think they were on immunosuppressants but I don't know if they were high doses. I think Al was on azathioprine and 9mg. pred. I don't know what Lightwarrior was on. I'm not comparing them to you, they were exposed to different things than you probably are.... Light worked in a hospital, and Al went on a cruise.... I'm just ruminating about this stuff from a pretty uneducated point of view. I certainly understand your concerns given your situation and am hoping for the best outcome to whatever is decided.

Wegetarian

10-03-2013, 11:21 PM

How was your appointment? I really hope you would have some good news.

gilders

10-04-2013, 01:49 AM

How was your appointment? I really hope you would have some good news.

Hmmm, neither good nor bad really.

Firstly it was confirmed that the nasal biopsy did show granulomas. He explained that it was a bit of a surprise as it is rare that it shows up so clear on nasal biopsys (lungs and kidneys are much better for clear results). I'm not sure why on the email he sent me he said "likely Wegeners" when the report showed clear granulomas.

As it does not seem to have reached my kidneys yet and has been quite a slow flare, we've decided to start with 40mg/day pred and 200mg Azathioprine. He was considering mycophenolate instead of the Aza, but I explained that research that I have read suggests Aza is more effective. I also reminded him that I've coped with and responded well with aza in the past so couldn't see an advantage of changing to mycophenolate - he agreed.

He has warned me that I'm in a bit of an awkward position as in how to carry on the treatment. The reason being that the steroids should make me "feel" better initially even if they aren't actually doing the job of fighting back this relapse into remission. As there is no reliable blood test to see if I'm improving and he can't totally trust how I feel in myself, I'll have to be especially vigilant on looking out for new symptoms such as the rash, etc.

Some good news and something that I've been stressing about is that he now thinks he will be able to get funding for RTX. This is especially important for me as I can not have cyclophosphamide. Therefore if the pred and aza don't kick butt I'll be on RTX for the first time.

He is also hopeful that the AZA and Pred will not finish my kidneys off. Neither are especially toxic to kidneys, but as with any medication, they can pit extra strain on poor functioning kidneys.

Overall today's appointment as left me in a more positive mood. Realistically he was never going to say "you're not having a relapse", so overall the news was good.:thumbsup:

Thanks for everyone who has been concerned. I'll keep updating with my progress.:love:

This relapse has been so different to any of my other relapses which were very quick, aggressive and immediately went for my kidneys. Hopefully this is a sign for all of us that each relapse is less severe than the last, but it could be just an anomaly!

Alysia

10-04-2013, 02:11 AM

Hi Gilders,
I am sorry that you are having a relapse again.
but the other news are good: having the opprtunity to get RTX and the fact that this relapse is not as accute as previously.
and this time you are not alone. you have us with you :hug1:
I am sending you my praying. you are a "veteran" fighter of WG so I believe that you will soon feel better.

gilders

10-04-2013, 03:32 AM

Thanks Alysia!
I've responded quite well to relapses before (even though my kidneys have been damaged more each time).
The fact that this is a "slow burning" relapse should be a good sign. It is similar to the first onset of WG which led to severe, life threatening problems, but I think that was down to a delayed diagnosis, rather than "slow burning" active WG being harder to treat.

annekat

10-04-2013, 03:59 AM

I'm so glad to hear that even though you are having a relapse, it does not appear to be as threatening to your kidneys and overall health as previous relapses you have had. Also, that the doc thinks you can get funding for RTX.... that is great news! I asked on another thread what your immunosuppressant would be before reading this post.... I see it is AZA and that it is not seen as being too hard on your kidneys.... that is also great news! I'm sure you will keep us posted, and I wish all the best to you!:thumbup:

gilders

10-04-2013, 04:24 AM

Already feeling better - my wife is cooking my favourite, a big fat juicy steak and chips!:thumbsup:

Tomorrow the serious diet begins!:predrage:

rebekah

10-04-2013, 08:11 AM

gilders

10-04-2013, 08:23 AM

I'm glad to hear you are already feeling a little better. I hope you won't need Rituxan, but it's good to know it'll probably be covered if you do need it. Enjoy the steak dinner and I hope you start to feel even better soon. :)

Thank you. To be honest it's more that I'm feeling better mentally rather than physically, but I'm sure that will come soon enough!

Wegetarian

10-05-2013, 08:54 PM

Some good news and something that I've been stressing about is that he now thinks he will be able to get funding for RTX. This is especially important for me as I can not have cyclophosphamide. Therefore if the pred and aza don't kick butt I'll be on RTX for the first time.

Looks like the NHS is more positive towards RTX:
Article > Roche's MabThera now favoured by NICE in vasculitis (http://www.pharmatimes.com/Article/13-10-03/Roche_s_MabThera_now_favoured_by_NICE_in_vasculiti s.aspx)

gilders

10-05-2013, 09:08 PM

Looks like the NHS is more positive towards RTX:
Article > Roche's MabThera now favoured by NICE in vasculitis (http://www.pharmatimes.com/Article/13-10-03/Roche_s_MabThera_now_favoured_by_NICE_in_vasculiti s.aspx)

Thanks for this Wegetarian.
Did you read the full article? The following excerpt concerns me,

"After considering new information submitted, NICE has now concluded that MabThera is indeed a cost-effective use of NHS resources for people with severe ANCA-associated vasculitis who can have cyclophosphamide, but only if further treatment with cyclophosphamide would exceed the maximum cumulative dose, after calculating the cost to be around £12,100 per QALY in this scenario.

However, its independent Appraisal Committee decided that there was insufficient evidence to determine whether the drug is value for money when used in patients unable to receive cyclophosphamide."

This is worrying for me. It looks like like they will authorise RTX so long as cyclophoshamide exceeds the cumulative dose. I can not have cyclophosphamide due to sever reaction to it.

This seems very odd to me. RTX is expensive so surely if they can only use it sparingly then it should go to people who can not receive cyclophosphamide (like me) rather than people who can tolerate cyclo. Or am I just being biased??

Thanks again,but I'm not too sure sure if this is positive news for me?:sad:

Wegetarian

10-05-2013, 11:00 PM

gilders

10-05-2013, 11:17 PM

Yeah, I read it. Their conclusions did seem to defy logic.

I would assume its good news for you as it:
1. shows that the NHS realises that the positive effects of the medicine outweighs its high costs so should be easier for you to get permission for RTX
2. the reason they were unsure about its use for people who can't take CYC was due to insufficient evidence which may well mean there is little research about it (not that it wouldn't be suitable for some reason, I mean we don't know why they couldn't take CYC in the first place and there might be many reasons of which some also prevent RTX use - just a guess though)

It all comes down to cost is the way I read it. CYC is a much less expensive so they're willing to pay for that and a couple of dose of RTX. But a full course of RTX without the CYC is too expensive. It's certainly more positive news for me than a complete no funding allowed for ANY WG treatment.

Hopefully the high dose pred and AZA I'm on will work well enough that I don't need to worry about RTX, I'm sure in the future when there's more evidence that RTX is working well (and hopefully the cost of RTX comes down) I'll have easy access to it!

It's only day 3 of treatment, but I've noticed a BIG increase in appetite and my heart rate. My virus isn't settling down, but the immuno-suppressants haven't allowed the virus to get any worse.
The nose bleeds are already a little less frequent. I've not noticed some of the "highs" and "happy" feelings that others seem to get with an initial high pred dose, maybe I'm just a miserable bugger:wink1:

annekat

10-06-2013, 12:03 AM

gilders, I'm glad things are at least looking more positive overall. Every case is different, and since you can't take CTX due to a severe reaction, the cumulative dose issue seems irrelevant. They should be able to approve RTX for you under those circumstances. Like others here, I hope you don't need it and that the current treatment gets you out of the woods. I'm glad the virus is not getting worse!

rebekah

10-06-2013, 03:06 AM

Happy to hear things are improving some for you and you are having fewer nosebleeds. That's a step in the right direction. I hope you don't need the Rituxan and the virus doesn't get worse... Get some rest and I hope you feel even better soon! :)

Wegetarian

10-12-2013, 12:34 AM

Alysia

10-12-2013, 01:53 AM

Hey Gliders, how are you feeling? Haven't heard from you in a few days and wanted to know everything is OK.

(Even tried stalking you through your profile to see if you posted updates in some other thread :))

I was also worried about him. I sent him PM yesterday and he replied. he will soon write here what he had been through.

gilders

10-12-2013, 07:09 AM

Hi all.
Just a fairly brief update. It's been a week since I re-started treatment for a relapse (40mg pred, 200mg AZA being the main meds) and things haven't been too good.
Sunday was that the start of a 5 night vacation in Scotland and it was expected to have come at an ideal time, i.e. a relaxing break to help kick start my recovery from relapse - it didn't quite work out that way.
As most of you may recall, I have had previous heart problems (left ventricular dysfunction), my old cardiologist never really had answers to the cause of the heart failure, but would blame either my haemochromatosis or WG. He eventually discharged me when my echo results seemed to show improvements. Most of my heart symptoms didn't improve, except for the irregular heartbeats and general chest pain/tightness, which both became less frequent and severe.
Well since I re-started my WG treatment, last Thursday, the irregular heartbeats and chest pain came back with vengeance. On Monday, our 2nd day in Scotland, we got a call telling us that our son had been attacked the previous night (nothing too serious, thankfully) and our dogs were unwell (pooing blood). By the afternoon I returned to the hotel as I was absolutely exhausted. At this point the irregular, painful heartbeats were causing my body to jolt around like I was having severe hicups. I ended up in A&E where my heart returned to normal rhythm. After a lot of consideration they let me out of hospital that evening. This was partly down to the fact that there were no individual rooms available and the Drs admitted being immuno-suppressed and on a regular ward was not ideal. The "head" Dr said I must return immediately if my heart began to beat out of sync again.
The Dr also contacted my local hospital and it was considered that my meds were not the cause of the heart problem.

Obviously the news I'd received about my son and dogs, plus I'd over-exerted myself in Scotland could have had a lot to do with it. BUT I returned home yesterday and today I had an attack that lasted for 2 hours. I now don't know if the stress is causing the heart problems as today has been relatively stress free.
My wife picked more meds up for me from the pharmacist. He spent a long time double checking that he meds were not the cause of the heart problems, so I'll have to accept that it's just a coincidence that the symptoms started at the same time as pred and aza.

I have just emailed my specialist who deals with my WG to ask if he thinks I should be re-referred to a cardiologist. I don't want to appear like a hypochondriac, but I worry I might look like that as when I eventually allow myself to go to hospital my symptoms subside and results are almost normal (sometimes). I have a pulse that is quite visible on my wrist and I am certainly not imagining that my heart briefly stops. The feeling of my heart stopping (plus pain) matches the pause in the visible pulse in my wrist.

As for my general health relating to my WG relapse, the treatment hasn't began to help yet, except for less pain in my left foot that has rheumatism. I also had 1 morning without lots of blood from my nose, but the bloods back again.

I am hoping that now I'm home I will force myself to relax. If I still feel I am slipping deeper into a more serious relapse I'll ask my specialist if it might be time to add some chemo (hopefully RTX) to the pred and aza.

Although I wasn't very well on my trip we still had a great time. The highlights being Loch Ness, spending the night and dinner in a church and visiting my favourite whisky distillery. I got to fill my own bottle of whisky at the distillery, label it and there will forever be a record of it at the distillery. For those interested, it was cask strength, 18 year old and finished in a bourbon cask, rather than a sherry cask (i.e. it's a whisky that can not be bought elsewhere). Sorry if I've just bored you all to death.

I guess that wasn't as brief as I meant.:ohmy:

Thanks for your concern.

annekat

10-12-2013, 07:53 AM

Gilders, I'm so sorry about the problems you had on your trip and since starting new treatment, and the news about your son and dogs, too! The heart issues are troubling, but it sounds like you are very good at monitoring those symptoms and ready to get help when needed. I'm glad to hear that you had some fun on your trip despite it all! And no, you did not bore us, or me, anyway. Keep us posted, and I wish you all the best. Sounds like some relaxation is definitely in order.

Titus3:2

10-12-2013, 08:01 AM

gilders

10-12-2013, 08:31 AM

Hi gilders,I am glad to hear you did go on your trip,and had some fun.But sorry to hear that you have been having such a hard time.We have kept you in our thoughts.I don't know what kind of whiskey you drink,but anything that comes out of a bourbon cask must be good.Wishing you well.
It's scotch whisky (single malt varieties) that I usually drink, Glenlivet being my favourite! After distilling their whisky they tend to use casks that have previously been used for bourbon for the younger (12 year old) whiskies and port/sherry for older (18+ year), it adds an extra depth of flavour!

I also drink a few bourbons, mostly the more famous ones such as Jack Daniels, Jim Beam, Makers Mark.

I used to be an heavy drinker (not an alcoholic though), but I now have to have quality over quantity as I get such bad hangovers with the smallest amount of alcohol.

There I go again, babbling on about whisky (REALLY I'm not an alcoholic):wink1:

Wegetarian

10-12-2013, 08:52 AM

Nice to hear from you again, just sorry that the news aren't that good :(

visiting my favourite whisky distillery. I got to fill my own bottle of whisky at the distillery, label it and there will forever be a record of it at the distillery. For those interested, it was cask strength, 18 year old and finished in a bourbon cask, rather than a sherry cask (i.e. it's a whisky that can not be bought elsewhere).

Sounds yummy! My favorite was for a long time Laphroaig's cask strength - but I haven't seen it anywhere for ages. Guess I might need to order some from the UK. I think I have one unopened bottle of their quarter cask in store though, its also very good and matured in a bourbon barrel before put into the quarter cask. Have you tried it?

https://www.laphroaig.com/whiskies/quarter-cask.aspx

drz

10-12-2013, 09:17 AM

I had to looked this up since I was was wondering what a Scotch whiskey was doing in a bourbon cask. I found the answer too:

Chapter 5 - Maturation of malt whisky, about wood and casks (http://www.maltmadness.com/malt-whisky/beginners-guide-05-maturation.html)

DJS

10-12-2013, 09:34 AM

Hey a whiskey thread! I love the little finger sized glass of B&B. just on occasion, haven't sipped one in years but I'd like too. I once visited Fecamp, France where the monks brewed the stuff, wonderful sample room. No water, no cola, just the straight stuff for dipping your tounge into

Debbie C

10-12-2013, 01:15 PM

Gilders, I have just read through the whole thread now and am so sorry to hear all the pain and worrying and everything you have been going thru. I do hope the meds now will start to kick in but if you need rtx you'll be able to get it. I hope your son and dogs are doing well. And I will pray that this does not hit your kidneys and you get back into remission soon.At least it sounds like your trip was somewhat good. I hope they figure out what is going on with your heart as well. Your visit to the distillery sounded fun. Have a drink for me...Cheers !!!!:hug2:

gilders

10-14-2013, 04:19 AM

Nice to hear from you again, just sorry that the news aren't that good :(

Sounds yummy! My favorite was for a long time Laphroaig's cask strength - but I haven't seen it anywhere for ages. Guess I might need to order some from the UK. I think I have one unopened bottle of their quarter cask in store though, its also very good and matured in a bourbon barrel before put into the quarter cask. Have you tried it?

https://www.laphroaig.com/whiskies/quarter-cask.aspx

No, I haven't tried any from Laphroaig. After speaking to a whisky expert he explained that the area of Scotland where the distillery is based has the largest influence on taste. Therefore I worked out that my favourite area is Speyside and my collection is mostly from that area. I have tried whiskies from other areas of Scotland and although none have been undrinkable, I do tend to stick to the Speyside malts.

I'm staying in a log cabin next year not too far away from Laphroaig, so I'll have to pay it a visit and sample one or two.:wink1:

I had a good nights sleep last night and had a lot less bloody phlegm this morning. It's 1715 UK time and my heart has been behaving very well today. Definitely the best day I've had since I started my treatment for this relapse. Hopefully I am now just turning the corner and on the road to recovery!:thumbsup:

Michael Bell

10-14-2013, 04:37 AM

Hi Gilders, try the masters of malt website. Great choise of malts, and priced from 20> to 10,000 £ per bottle. Some very good cask strength single malts in there.
Keep up the fight, and if you need it, a glass of cask strength (for medicinal purposes) is a great way to remove some of the pain.
Michael

annekat

10-14-2013, 02:56 PM

I think it's refreshing and fun to see people talking about whisky on here. Gilders, I'm glad you have that enjoyment as part of your life and I don't think you could be an alcoholic if the amounts you can easily handle have become so small. And I hope you are indeed on the road to recovery! Maybe the trip was just a little much for the fact that you were fighting off a flare, but I'm glad you enjoyed it anyway and are planning another one for next year.

Wegetarian

10-15-2013, 05:10 AM

I'm staying in a log cabin next year not too far away from Laphroaig, so I'll have to pay it a visit and sample one or two.:wink1:

Sweet! Before you do that, make sure you buy a bottle. They at least used to have this campaign that if you bought a bottle you could register on their website and get a perpetual lease for one square feet of their lands. I guess they said that it would prevent anyone from buying the distillery as the land is in the use of friends of Laphroig. They also sent me a document about my square feet :D If I remember correctly we are allowed to go there once per year and they'll give a map to the area and a glass of Laphroig.

Here is some more info:
Laphroaig - Age Verification (http://www.laphroaig.com/friends/login.aspx?ReturnUrl=%2ffriends%2f)

If I hadn't just taken my MTX I'd raise a glass of single malt for your recovery. I'll do that tomorrow instead :)

Wegetarian

10-15-2013, 05:12 AM

I don't think you could be an alcoholic if the amounts you can easily handle have become so small.

Unfortunately decent single malts are so darn expensive that I couldn't be an alcoholic with that stuff even if I wanted :(

Wegetarian

10-18-2013, 08:40 AM

gilders

10-18-2013, 11:42 PM

How are you feeling? Forgot to have a glass that day, but here is to your health Gilders! (Its a really nice whiskey, matured in cherry casks and has a lot of flavor but tastes real smooth)

https://photos-3.dropbox.com/t/0/AACw4J-yitYv02RwEcgrcELKsc_jJel8MWdfRZ2Y3DC83w/12/36176395/jpeg/1024x768/3/1382047200/0/2/Bowmore.jpg/N2rqp7sJw2Ez5g56gflbPWSi5kzdRBhUB2e1EEaN9HQ

This has been the longest period of remission I have had and have been off all the main meds for about 3 years. But from what I can remember from my previous relapses, I seemed to start feeling better almost as soon as treatment commenced.
This relapse has been so different this time. It has slowly crept up on me over the last 12 months and has not done damage to kidneys (both the complete opposite of my usual relapses). The reaction to treatment has been different as well. It's now been 2 weeks since back on high dose steroids and Azathioprine. The rheumatism in my foot has eased and my nose isn't as bloody, but there hasn't been an improvement in my overall "well being". In fact I feel more fatigued than usual and the heart issues are still a real issue (irregular painful heartbeats).
I've been spending a good bit of time in bed and as I have my tablet (ipad type thing) there and not my laptop, I don't get to reply as much as I'd like on this forum (the tablet doesn't seem to like this site too much when it comes to typing). But I have been keeping up to date with other people's posts.

I don't expect miracles to happen within 2 weeks and from reading other people's experiences I know, even on stronger meds (RTX, CTX), it can take a long time for improvements, but for how I've previously responded, there's something a little different this time.

I have my next round of bloods next Thursday. Hopefully there will still be no further kidney damage.

Alysia

10-19-2013, 04:14 AM

Hi Pete,
I asked in another thread how are you, and here I found you...
It sounds that you stopped the flare from getting worse, and even have a bit of improvement. I hope your kidneys are intact. what does your doc say about your heart issue ? why is it like that ?
about being tired, I think that it is when the body is fighting inside: flare and/or the "activation" of the meds. our bodies are "battle field", so no wonder we are so exhausted :(
I am joining wegetarian in raising a glass to your health and to everyone's health here, Cheers :)

gilders

10-19-2013, 05:33 AM

Hi Pete,
what does your doc say about your heart issue ? why is it like that ?

I never get a real answer. "Why is it like that?" is usually answered with "I think it's connected to your Haemochromatosis". When I press for more clarification and explain that my Haemochromatosis is under control the answer changes to "it's connected to your Wegener's".
To be fair they have done many tests including echo, angiogram and a special scan in London to check for deposits of iron. My heart, itself, looks fine, although it is enlarged.

If the drs said something like "I know it feels awful and is painful, but we know what it is and you're not in any danger" then I would just accept it and be relatively happy. But as they don't know what's causing it, they can't assure me that it isn't dangerous.

I have been referred to a new cardiologist, but the appointment isn't until December. The NHS has become SO slow now. Without getting too political I really do think it needs to start treating people who have paid in to National Insurance for a long time, it can not handle the amount people that it's trying to.
Emergency treatment is still world class in my opinion, but the amount of people waiting for other treatment is unacceptable (at least in the area of England where I live).

Kellie613

11-10-2013, 11:07 AM

Alysia

11-10-2013, 05:42 PM

Hey, Pete, long time since you wrote.... are you ok ?

Wegetarian

11-10-2013, 06:57 PM

Hey, Pete, long time since you wrote.... are you ok ?

Funny, I was just thinking the same thing last night and figured I'd send gliders a message.

annekat

11-10-2013, 07:05 PM

Funny, I was just thinking the same thing last night and figured I'd send gliders a message. I didn't know Gilders' name was Pete. I should think he'd be getting a notification of new responses to this thread, if his settings are set that way. I certainly hope you are doing OK as well, Pete.

gilders

11-11-2013, 12:51 AM

Hi all,
Sorry for not been active on here recently.
I guess "doing ok" just about sums up my current health. I've avoided staying as an inpatient in hospital since this relapse/flare and commencement of treatment, but overall I'm slightly worse.
I'll copy and paste the reply to the message Wegetarian sent me (I'm being lazy again:wink1:),

"Thanks for your message of concern. Nothing to worry too much about, I'm still at home, haven't needed to spend any nights in hospital.
I've been back on the Pred and Aza for a few weeks now, but things have gotten slightly worse. A lot is down to side effects of pred which doesn't concern me too much. I don't feel this relapse/flare is becoming extremely aggressive, but also feel that the pred/aza combo isn't knocking it back in to remission, but just slowing it down. I see my specialist on Thursday and we'll have to discuss if something stronger (RTX as I can't have Cyclo) might be the best route to go.
It's frustrating as although I've had the "full" WG (i.e. severe kidney involvement) all my relapses have responded well to pred/aza. The nose bleeds are back at full force. In fact it's 1230 UK time and my nose has been bleeding non-stop since I woke at 0930.

I have been reading posts, but haven't got round to replying. If there had been something I'd read that nobody else had been able to answer, I would have made the effort to reply. I've been a bit lazy, but I am quite tired ad struggling to concentrate.

The irregular painful heartbeats are still on going and these seem to wear me down and I spend hours just trying to keep calm. My blood pressure and heart rate don't get to dangerous levels during these episodes, but my blood oxygen levels do drop, which suggests something needs investigating sooner rather than later (my cardiologists appointment isn't until late December).

I'll be going to my son's graduation ceremony at the end of the month and with Christmas not too far away I've got things to look forward to."

Thanks for everyone's concern. I feel guilty that I've not been putting the extra effort in to reply more frequently. I am very tired at the moment, but I think most people on here suffer fatigue to various degrees, so I should try harder.

gilders

11-11-2013, 02:24 AM

Your story wasn't boring at all. I actually quite enjoyed reading it :) Scotland is on our bucket list as well. We will visit the distillery as well. Where was that located? Just curious. Our trip would not be any time soon. But someday!
Kellie.

Hi Kellie. The distillery we visited (Glenlivet) is in Ballindalloch, Speyside. It's only about 140 miles north of Edinburgh, but as you'll end up driving through the mountains of Cairngorms National Park it takes over 3 hours on some very small roads. The journey is worth it, some lovely scenery.

There's plenty of other distilleries to choose from and they're probably as good. The reason I chose Glenlivet is simply because they make my favorite whisky!

If coming all the way to Scotland, you may as well pop down to England. You wouldn't need to go as far South as London. I live in Yorkshire, so I'm a bit biased, but we have beautiful scenery and historic towns (York is great).

Alysia

11-11-2013, 02:54 AM

Hi Pete,
I am worried about you :sad:
things don't sound very well... the bleeding and the rest... are you going to meet your doc this thursday ? I think it is time for more serious treatment. if it will be RTX remember that it takes time for some of us untill the results coming.
considering the issue of writing here, all you have to write is just how are you, from time to time, otherwise, wedgie and me will send you PMs :wink1:
I am sending you my love and my prayings :hug1: take care and update us.

annekat

11-11-2013, 03:19 AM

Pete, we are glad to hear from you, and you know by now we care about you very much. No need to feel guilty and nothing wrong with being lazy. I think Wegs gives us permission for the latter. The heartbeat issues you have are what scare me the most, but I remember that you have a pretty good understanding of those, which I don't. As for the Wegs treatment, I'm encouraged by remembering that you found you can probably get RTX through the health service, and/or the company who makes it, if you need it. I'll be thinking of you and hoping for some improvement soon.

Enjoy your son's graduation and the upcoming holiday season. Looking forward to things should help your outlook.

gilders

11-15-2013, 04:44 AM

Just a quick update from today's appointment.
Blood tests were as good as could be expected with ANCA only slightly positive, renal function stable (poor but it always is for me) and inflammation stable.
Therefore both myself and specialist are a bit unsure whats the best way to attack this flare.
I am feeling worse since I started the aza/pred treatment, but with good blood results we're holding back on the big guns (chemo - RTX). I know some people would be of the view "kick a flare in the butt with everything possible before it gets too severe", but after 19 years experience and relapses that have responded well to aza/pred treatment, I think we're dong the right thing. We both would have liked to start tapering the pred down, but due to how I'm feeling, we're keeping going on the same dose.
He is also concerned about the problems with my heart. Although he's not managed to get my cardiologist appointment any nearer (20th Dec), he has managed to get me booked in for a 24hr heart rhythm monitor and echocardiograph before I see the Cadiologist which is a big help as we'll have some results to discuss.

As some of you may be aware I have haemochromatosis. From initial diagnosis about 7 years ago my iron levels have been brought down to a safe level and I have not needed any treatment (blood letting) for the last 4 years. Strangely I got a call today from the nurse saying that my level has unexpectedly shot up to 400+. Considering my level has been stable at 100 ish for 4 years without treatment this was a bit of a surprise.
Although there is no known correlation with WG and haemochromatosis is does raise a few questions. My health has been quite good (for me) for the last few years. Since I have started this flare my heart has reverted back to a state where it used to be very bad and now my hameochromatosis is a little crazy again. I have been frustrated with specialists that always blame my WG for everything, I feel like they don't have a clue so choose the easy option - pass the blame on to another specialist. BUT everything does seem to be going wrong now that I'm having a relapse/flare, so maybe it all is connected in some way to WG???

annekat

11-15-2013, 04:59 AM

I'm glad things are going well enough that you can hold off on the big guns for now. You have some other complex issues going on, too, and I hope you are able to get enough special attention for those without docs continuing to pass the buck and blame the Wegs for everything! On the other hand, it seems a natural tendency to think that everything in the body is related. But then, someone should be able to treat your body as a whole and not always treat each thing separately.

Alysia

11-15-2013, 05:22 AM

Hi Pete,
I am glad that your wg is "under control" after all. I must say that my anca over the years was positive most of the time and it was not only indication to flare but also to wg smoldering.
about your haemochromatosis, I didn't know what is it so i googled it
Iron overload - Wikipedia, the free encyclopedia (http://en.wikipedia.org/wiki/Iron_overload)
is this what you have ?
then it is the "opposite" of wg, since at least in my case, one of wg symptoms were low Iron.
anyway, I hope you will soon find out what is going on with your heart and feel better in all your "appartements".
take care and update us.

gilders

12-03-2013, 01:13 AM

Just a quick update as I've been quite quiet on the forum recently.
Went for my blood letting a few days ago and was hopeful that it might make some difference to the issues I'm having with my heart.
Well the blood letting never happened. The nurse contacted my liver specialist when she'd heard about all the health issues I'm having at the moment. He decided that it would best to hold off on the blood letting until things have settled down.

I still feel I'm stuck in a position where my current meds are stopping this relapse progressing to a worse level, but don't see any improvement. In fact I'm feeling worse, but I'm sure that's down to pred side effects rather than WG flare getting worse.
I'm just so thankful it hasn't attacked my kidneys this time.

Alysia

12-03-2013, 02:13 AM

gilders

12-03-2013, 03:20 AM

Hi Pete, I missed you :hug2:
how are you feeling ? what is better and what is not ?
in my case, when the numbers of the liver functions were not normal, the doc sent me to US of the liver, just to be calm that there is no damage.
what are the plans for you ?
I am glad that your kidneys are not involved. they better "behave".
take care.

The liver problem is to do with my haemochromatosis, not WG, although it's strange that everything (heart, liver, etc) has become worse since the start of this WG relapse. It's not at an immediate "danger" level and it shouldn't make me feel unwell. It's just the fact that my previous cardiologist mentioned that some previous improvements to my heart function could have been due to the blood letting. I hoped that after having a pint taken my heart would start behaving, but I think due to my extreme fatigue the liver specialist didn't want me to feel any weaker (like I usually do for a day or 2 after blood letting).

As for what is better and what is not. The only thing I can think of that is a little better is the feelings of me about to slip in to another seizure have become less frequent.
There's quite a few things that are worse. I've got what I presume is Psoriasis on my hands. They're dry, scaley and oozing a little blood. My nose bleeds are still quite bad. Currently have a stubborn sore throat. Cramps in hands, feet and legs are getting worse day by day. Eyes are really dry at night. My face is SO fat and swollen with the pred. I eventually gathered the energy to go get my hair cut today (long over due) and couldn't bring myself to look straight ahead at the mirror. I'm really not a vain person, but it's shocking how quickly pred can make your face SO much fatter.

On a different note, my parents were in London last week looking after my sister's children while she was in New York. I went down to my parents house to check on it and borrow some tools (I had a central heating radiator to replace) and arrived at the house to find that they had been burgled. It was such a mess. Many of the items can be replaced, but there was lots of y mother jewelry that she's had since she first started dating my dad that could never be replaced. We always store the kids Christmas presents at my parent's home, but this year money has been so tight that we didn't have much down there.

I've never wished for a year to end as I know all my health complications will most likely result in me not living to a very old age, but his year has come very close to me wishing it away. I hope that didn't sound too depressive - I'm not not depressed, but more than ready for some good news:wink1:

annekat

12-03-2013, 04:26 AM

Thanks for the update, Pete. I wish things would settle down and you could feel more confident that the relapse is being controlled to the full extent. And I wish they could figure out what is going on with your heart. I, too, am glad your kidneys aren't involved this time. Best wishes for a turn-around in your recovery soon.

Alysia

12-03-2013, 04:33 AM

Hi Pete,
I am sorry for you and for your parents. an aweful experience, of invading privacy.
it seems that your wg is still active, although not aggresive. but it is in a state that would make my wg-doc think about adding something to your treatment. what is your doc thinking about your state ?

annekat

12-03-2013, 04:40 AM

Oh, just read the post about your parents being burgled. That is truly awful, and something we cannot imagine until it happens to us, I'm sure. What a shame that they lost some irreplaceable and precious items. And the mess to be cleaned up! I hope for some good news for you soon, that you and your family can have a joyous Christmas despite everything, and that 2014 will be a much better year for you. :hug2:

Wegetarian

12-03-2013, 08:50 AM

Damn, that's a lot of crap for you to deal with lately :( How much pred are you on these days?

I hope xmas would allow you to think about other things than your health and those darn burglers.. I just love the season, fun time with family. The kids even behave quite nicely since we tell them the elves are looking. (As the elves bring stuff into their calendar on the wall each night, how could they not be real?) :D

gilders

12-04-2013, 08:06 AM

Hi Wegetarian.
I'm on 40mg/day. Been on it 2 month now. Not a huge amount, but I just don't seem to deal very well the side effects.

I have a holiday booked to Cyprus in May. That's 6 months away so I'm sure there'll be some improvement by then.

gilders

12-15-2013, 10:47 PM

I replied to a recent good news thread from Pete and mentioned how my relapse doesn't seem to be getting under control. I received some kind replies, but didn't want to hijack Pete's good news, so I'll update via this thread originally started by me.
Debra wondered what I meant by my bloods not worsening and ANCA actually improving, but my relapse worsening. For the the last couple of month I my symptoms (nose bleeds, extreme fatigue, general "hangover" feeling) have stayed the same. I believe that the pred/aza combo had stopped this relapse progressing, but not knocking back into remission. This last week I feel that the aza/pred combo isn't managing to hold this flare back. The reason being I feel so much worse and I'm now becoming breathless and my rheumatism pain is worsening. I am still thankful that WG hasn't attacked my kidneys. Its usually the first thing to be attacked. This relapse is so different to other relapses I've had, it's almost as if I've got limited WG this time instead of my usual kidney involved relapse.
Alysia asked if I'm not on RTX because it's not been approved yet. I'm only on pred and aza at the moment because (except for when I initially got WG) relapses have always respoded to this treatment. Both myself and Dr would prefer to avoid stronger chemo drugs whenever possible. But when I saw him last week he admitted that it looks unavoidable this time. So I don't as yet know for certain if RTX will be available for me. I'm afraid the NHS will try all the cheapest options first, rather than the best options.:unsure:

Pete

12-16-2013, 01:40 AM

Hi Gilders,

I sure hope you get approved for rtx. I was on aza briefly about two years ago. It didn't go well. I either had an allergic reaction, wasn't off ctx long enough before starting on aza, or something else. I ended up with pneumonia and was pretty much out of commission for about six weeks. If your doc decides to put you on ctx, be sure to ask about the transition to a new drug. Also be sure to keep hydrated with ctx to keep the metabolates flushed out of your bladder. When I transitioned from ctx to mtx, I was off immunosuppressants (but not pred) for about 10 days. I've had no issues with mtx (20 mg/wk taken 10 mg in morning and 10 mg with dinner later the same day). I continued on mtx while getting rtx.

Good luck!!

gilders

12-16-2013, 02:05 AM

Thanks Pete. I had to be taken off ctx as I didn't react well to it. Mtx isn't an option for patients with kidney involvement, so rtx is the only strong option for me.

Alysia

12-16-2013, 02:53 AM

Hi Pete,
If rtx is your only option, and if you are not getting better, then you and your doc wil have to fight for approval of it. I had to fight too, please read in this:

http://www.wegeners-granulomatosis.com/forum/off-topic-discussion/2941-hostage-bureaucracy.html

good luck ! and hang on there :hug2:

Pete

12-16-2013, 03:14 AM

Given the cost of rtx (my two infusions carried a list price of US$20,000 each), any payer is going to swallow hard before releasing that much cash. Each payer seems to have different approval procedures. Things seem to move faster if the request comes from the doc instead of the patient (at least in my case). I was approved in a matter of a few days with no input from me.

i hope your docs are strong advocates for you.

annekat

12-16-2013, 03:18 AM

I agree with Alysia, all other serious options have been tried and haven't worked for you. I'm glad, though, that the kidney issues have not returned. We need to make sure they don't! If you cannot get RTX through the NHS, try going to the company that makes it for help. It is a shame that you should have to do that, but whatever it takes. As discussed in the past, they have a program for providing the drug to those who cannot get it any other way.

gilders

12-21-2013, 07:48 AM

Just a quick update.
Went to see new cardiologist today. Results from ecg did confirm a "fault" with heart, BUT he's convinced it's nothing dangerous :thumbup:
He explained that I have an extra heartbeat frequently. This extra heartbeat is weak, I do not feel this beat and it does not eject all the blood that's in my heart (as it's too weak of a beat). The next beat then has an overload of blood to eject. As my heart "knows" this, it has to produce an extra strong beat (which I feel). He couldn't really explain why it feels painful as this is a fairly common fault, but not usually painful "but we're all different". Because every other beat is weak, that is why it feels like my heart is missing beats, but in reality it's missing regular strength beats, then adding an extra strength beat.
He explained how your heart as it's own "pacemakers". In fact it has 2. My primary pacemaker is what's faulty and causing the extra (weak) beat. He said that there's meds that could help, but then there's always side effects to meds. He also said that there's an operation that can burn away the primary "pacemaker" that's at fault, but I declined this as he reassured me that what's happening at the moment is not dangerous.
He did explain that as the symptoms mostly occur while I'm resting, it was a good thing. If the symptoms start occurring more frequently during exercise then that is an issue and will need further investigation.

It was so refreshing to leave the Drs with some good news, I've not had much recently.

I've generally felt slightly better the last 4 days. By no means well, but I've been having the odd couple of hours where I've had the energy to get off my butt!
I'm still hopeful that I'll be able to avoid chemo in January, but also know these last 4 days slight improvement is not my Wegener's in remission (yet).

annekat

12-21-2013, 08:12 AM

What a relief to hear an explanation of what is going on with your heart and that it is not dangerous! I would still find it a little unsettling, though, to be experiencing that and all the Wegs issues at the same time. I'm glad you are feeling a little better and I hope it continues.

Alysia

12-22-2013, 12:11 AM

Hi Pete,
I am so glad that there is nothing dangerous with your heart :thumbup: although it sounds not easy to live this way :sad: maybe there are some exercises that can help ? :confused1:
I understand that you did not get the rtx so far. is you flare diminishing ? I hope so.
I am sending you my love and my prayers :hug2:

Alysia

01-05-2014, 01:45 AM

Hi Pete,
I read in another thread that you are going for 3 days inpatient on monday. are you going to get the first rtx then ? how are you these days ?
I am sending you lots of hugs and prayers :hug1::hug2:

gilders

01-05-2014, 04:18 AM

Hi Alysia.
Yes I'm booked in for at least 3 days as inpatient from Monday. From the 17th December until 29th December I felt I was slightly improving. I had a few days with a little more energy and the nose bleeds and bloody nasal scabs were settling down a bit. The 30th and 31st December I had a couple of bad days feeling very tired and weak.
On New Years Day I had a shower before I was due to drive to football (to watch, not play). I could hardly stand after my shower, but thought by the time I drove to the stadium I will have recovered. From where I park it's a slight downhill 5-10 min walk to the stadium. I managed this, but was tired by the time I got to my seat. By half time I was so weak, shaky and generally felt like death that I wanted to leave. I could hardly stand and didn't have the energy to squeeze past people to get out of the stadium so decided I'd stay until the end and let the crowd disperse.
I really don't know how I made it back to my car, but I eventually did. I went home to pick up my wife and kids as we were going down to my parents for a New Year's buffet. Once I got to my parents I went straight upstairs to the bathroom and sat on the toilet shaking and trying not to be sick. My wife and Dad had to help me back downstairs and into a chair as I couldn't walk at this point. After resting for a couple of hours I began to feel a little better, but then my knees, elbows and shoulders began to hurt. The pain became much worse and we decided to go home. The pain started to settle down about 2.30 in the morning (with the help of pain killers).
In the morning my wife made an appointment with my specialist. I saw him at 11am and he decided to admit me from Monday. He explained that I urgently need more investigations such as endoscopy for my throat as I'm now struggling to speak and he wants the rheumatologist involved. He said no matter how quickly he tried to rush an appointment through with any of the specialists, it would be at least 6 weeks wait as an outpatient. He knows I need to be seen sooner and said that as an inpatient he can get any specialist to see me within 24 hours. We did discuss a change in medication, with RTX being my preferred choice (I don't have many other options due to renal failure and intolerance to Cyclo).

Therefore he never actually said I'll be starting RTX on Monday as I think he'd rather check with rheumatologist. But I would expect I'll be starting it as it's a waste of an hospital bed if I'm not receiving some strong medication.

Hopefully I'll have internet connection in hospital and I'll keep updating. I might even be able to do an hour by hour report on the effects of RTX which maybe of some use to others who are due to start it for the first time.

annekat

01-05-2014, 04:43 AM

Pete, I'm so sorry to hear of all these problems you've had recently but am glad you will be where you will get real attention and not have to wait for outpatient appointments and such. If it is time to get RTX, I hope to goodness that it goes well and starts you on the road to real recovery. We'll all be thinking of you, and an hour by hour update would be cool, but only if you are up to it, of course.

Alysia

01-05-2014, 06:53 AM

Hi Pete,
thanks for the update.
it sounds scary what you have been through at that day. please, next time, if you don't feel well, just stay at home. do not overdo.
I hope you will get best treatment at the hospital. I don't know how are your hospitals. here they are aweful, croweded, old, I would even say dirty. but I hope you are going to be in a nice hospital with nice team to help you feel better soon.
it will be intersting to read your update from the hospital !
so take us with you and we will hold your hand. :hug1:

windchime

01-05-2014, 10:28 AM

Hi Pete, I hope they figure it all out for you. This weakness is certainly scary as I have had that before. Hugs to you. Hope you can keep us posted from the hospital.

Debbie C

01-05-2014, 01:18 PM

Gilders,I hope they have a comp. hook-up there at the hosp. for you to update us.If not be like Phil and go hack into theirs !! I sure hope they will let you get the rtx if that's what they feels is best. I will say a prayer for you tonight that all is well and they are doing all that is needed so you can get back home soon to enjoy the New Year. Please keep us posted and if you can't maybe your wife can get on here and let us know what is happening. Take Care:hug2:

Debbie C

01-05-2014, 01:37 PM

LillysMom

01-05-2014, 02:58 PM

Wow! So far our experience in the States has been that our daughter can get whatever her Dr. thinks she needs. Her Dr. just had to find a location that does the procedure, insurance (Medicare and before that Blue Cross) covered 100%. Guess we need to be thankful for blessings that we take for granted. We think RTX infusion helped her. It is difficult to know because her WG seems to 'simmer' in some ways for most of the last 25 years. So how do we know if the treatment has slowed it down or not.
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annekat

01-05-2014, 03:37 PM

So, Lilly is on Medicare and they covered the RTX? Is she on a Medicare Advantage Plan? I'm just on Original Medicare and think I would pay 20% of the cost, and there is no out of pocket limit with Original Medicare. I don't know if I can qualify for "Extra Help", or Medicaid to supplement the Medicare. But I did not see a Medicare Advantage Plan I thought I could afford. I should look at this more carefully next year when it is time for open enrollment in new plans. At this point, I'm not at all sure I could get RTX paid for to the extent that I'd need. Am not doing badly, so maybe don't need RTX, but it would be wise to be more prepared.

gilders

01-07-2014, 11:01 AM

Alysia

01-08-2014, 06:33 AM

No live updates for my expected RTX treatment - I'm still at home! No beds available yet, so should be in tomorrow. I'm not wanting to stay in hospital, but as I know it's going to happen, I just want to get it over with:predrage:

Hi Pete, I am sorry for your waiting. I know it is hard. :sad: how can we cheer you up meantine ?

gilders

01-09-2014, 03:20 AM

Finally got the call. I'm just about to set off to hospital. It's not the one I was expecting, but another one that isn't very nice. In fact it was on the news this morning for EVERY department being understaffed and putting patients at risk. Don't think there's wifi at this hospital so might be away for a few days.

Debbie C

01-09-2014, 04:49 AM

I'm sorry to hear that, is there any way you can tell them you want to wait for the other hosp. to get a bed? If not I'm sure all will be O.K.. Please let us know as soon as you can. Good Luck and sending you my prayers you'll be home soon.

Alysia

01-09-2014, 05:24 AM

Hi Pete,
I am sorry for the hospital. although, who knows, maybe it will turn out to be ok or even good :confused1:
the hospital I am getting the rtx at, is very old and neglected, but the nurses are caring and professional.
I hope you will have there a good team to take care of you.
...and if they don't, just tell us and we will teach them all about WG :flapper:
lots of hugs and prayers to you :hug2:
stay strong. after all, you are a trooper :thumbup:

gilders

01-09-2014, 09:33 AM

Managed to get a wifi signal. Good news is that the ward I'm on looks newly refurbished and clean. They swabbed me for mrsa, so at least they're taking infection control serious.
Bad news is that nobody knew why I was here, just that my specialist refered me. Ive explained why I think Im here and theyve confirmed that I'll be getting specialists assessing me tomorrow.
Let's hope things progress tomorrow!

Alysia

01-09-2014, 05:55 PM

Hi Pete,
it sounds better then before... and it is good that you have wifi :thumbsup:
i didn't know what mrsa is, so i googled it:
Methicillin-resistant Staphylococcus aureus - Wikipedia, the free encyclopedia (http://en.wikipedia.org/wiki/Methicillin-resistant_Staphylococcus_aureus)
i remember someone on fb making warning considering it.
i hope you don't have it ...?
anyway, it seems that you will have to be in charge of your treatment... and you have us to hold your hand all the way... :hug2:

mishb

01-09-2014, 09:12 PM

Good luck Pete,

I hope that this is the treatment that finally works for you :hug2:

gilders

01-10-2014, 04:49 AM

Quick update.
The rheumatologist has been to see me and explained that the reason they haven't jumped straight into more aggressive Wegeners treatment is because they're not sure if there is something else going on. Due to some blood results looking good, such as ANCA, they don't want to rule out anything. Obviously something like an infection would only get worse if they start Rtx.
They have done LOTS of bloods and swabs. I've been for chest xray and they've jabbed me with blood thinning drug as preventative measure due to previous blood clots. Cardiologist also came to see me. I declined beta blockers again as he reassured me the arrythmias were not dangerous and for some people they are painful.
I think I'm been taken care of well and when all results are back tomorrow there should be discussion on what treatment I'll go on.

gilders

01-10-2014, 10:40 AM

Just been moved into isolation. Hopefully should have a better nights sleep now I have my own room. I think they might have moved me in preparation for rtx infusion rather than they've found an infection in me that could spread amongst the ward. Now that would be a change -me posing a risk to others!

Debbie C

01-10-2014, 03:17 PM

I hope you don't have an infection and that they moved you to isolation so you won't get more sick from someone else.Hope the results are good tomorrow....Sleep well:sleep:

gilders

01-12-2014, 12:25 AM

Yesterday didn't go anything like I expected!
A more senior rheumatologist came to see me. He decided that due to my blood tests looking relatively good, the fact that my joint pain isn't too severe and the fact that the flare seems to be localized to my nasal/sinus area that he didn't want start more aggresive treatment for my WG flare.
He said he would get ENT to check that there is no severe inflamation/activity in ears, nose and throat. If the activity isn't too severe he wants to reduce the pred and "see what happens":confused1: He went on to say that this could cause WG to flare up more and that would confirm the current meds (Pred/aza) aren't working. I told him I thought this seemed a little risky, but I guess it's a calculated risk.

A short while later an ENT Dr came to my bed and asked me when I last had a nose bleed. I explained that everyday I have fresh blood and also crusty, bloody scabs, but I've not had a full on nose bleed that required me pinching my nose for a long period for about a week. He then said that I was not urgent and would see me as an out-patient in about a week's time:predrage:.
A short while later a renal Dr who works with my usual renal Dr came to speak to me. I explained what had happened and asked if I could go home as there was no point in me waiting in hospital for a week to see ENT. He agreed, so I'm now home.

My main concern is the fact that not only am I now on less meds, but ENT haven't even checked how much activity is going on.

I've had this condition for 19 years and know my body quite well. I've had 4 relapses and can usually tell if meds are working. Reducing meds to see if they're working or not does seem risky with an illness such as WG, so I'm not too happy at the moment. It seems strange that I've seen 4 different specialists over the last 4 days, 3 had the idea of starting more aggressive treatment, but 1 wants to do the opposite and it looks like he's got his way.

mishb

01-12-2014, 12:36 AM

For me, whatever the Head Rheumatologist says - goes.
I guess this is what has happened to you too.

I'm so sorry that it hasn't worked out, as was planned, Pete.

I hope that your good blood results means that something is starting to go the right way again.

windchime

01-12-2014, 12:37 AM

Oh gilders I'm so sorry for the problems with the doc. It's funny how some docs will tell you to listen to your body and that you are your own best advocate and others have a GOD complex and won't listen to a thing you're saying. Who put you in the hospital originally and why didn't they bring in the senior rheumy before all the time and expense of hospitalizing you? That part makes no sense. I agree with you that reducing your meds is a poor move especially since your symptomatic. What planet are they from? Rhetorical question. Here is a hug for you........:hug2::hug2: or two.

Good luck with your ENT appt and keep us posted.

Alysia

01-12-2014, 02:05 AM

Hi Pete,
I am glad you are at home again and sorry for the confusion and frustration.
I thing that if you know yourself so well and can tell exactly what is going on inside, then you shouldn't be such a "good kid" and listen to the doc. THE DOC SHOULD LISTEN TO YOU.
can you ask for second opinion ? as far as you know yourself, and if you know that reduction of pred will cause trouble, just DON'T DO IT.
trust youself. and insist that they listen and accpet your point.
not easy to fight for these. but we are with you.
besides, if there is wg activity (nose bleeding freshly is a wg activity !) and even if it is not a flare but smoldering, still it needs to stop. try again to ask for rtx. they say no because it is expensive. don't give up.
we are all with you, holding your hand. continue to update. lots of hugs to you :hug2:

gilders

01-12-2014, 10:41 PM

why didn't they bring in the senior rheumy before all the time and expense of hospitalizing you? That part makes no sense.

My original Dr knew I need more investigations and more than likely more aggressive treatment immediately. He explained that no matter how hard he pushed for me to get appointments with rheumatology or ENT as an outpatient, it would take at least 6 to 8 weeks (much too long), but as an inpatient he could get them to see me within 24 hours. That's one of the reasons he wanted to hospitalize me, although in the case of the ENT Dr, it didn't go to plan. I think my original Dr will e rather unhappy with ENT.

windchime

01-13-2014, 02:14 AM

Well at least you did get an appt within a week instead of 6-8 weeks. The small upside to the whole thing. Hang in there this too shall pass.

annekat

01-13-2014, 05:57 AM

Sheesh, being pulled in all these different directions by different docs must be so frustrating and confusing, when in the end, you know your own body better than any of them. I agree that your good blood work means you may be in good position to try something and "see what happens", but they shouldn't stick with that approach for too long as long as you are having nosebleeds and other concerning symptoms. It may be that you need more pred, not less, and/or more of the immunosuppressant, to keep this from becoming a full-fledged flare, and your bloodwork from going downhill as well. Or, as has been suggested, possibly a different immunosuppressant, like RTX. I appreciate your updates and look forward to the next one!

gilders

01-13-2014, 06:03 AM

I appreciate your updates and look forward to the next one!

I appreciate having this forum to be able to discuss my concerns:thumbsup:. I've always had faith in my Drs as treatment as always seemed to work well even though my body has been damaged quite severely with this illness. But this recent flare has been so different - not as aggressive, but somewhat more stubborn!

pberggren1

01-13-2014, 10:17 AM

I feel so blessed to have my doctors. My ENT comes to my town every month and I don't even need an appointment to see him. If I have an emergency I can see my lung doc within 2 days of calling although I have to drive 5 hours. I can even see my Wegs doc or her associate within a couple days of calling if it is an emergency.

gilders

01-15-2014, 07:00 AM

Quick update.
Sunday night I ended up in A&E with suspected Deep Vein Thrombosis. Blood tests taken whilst there have shown my creatinine jump to 315 from 205 and potasium was high enough to require 2 lots of IV drugs. I have just returned home and will write a proper update later (probably tomorrow morning), but it looks like the rheumatologist's idea of reducing Pred to "see what happens" may have led to my current relapse becoming more aggressive and now attacking my kidneys - the one thing I really didn't want!!:predrage:
And the scan has shown "extensive clot within the calf, popliteal, femoral and iliac veins". it was likely that I had further clots in the abdomen area, but I was "too gassy" to obtain clear pictures.
To make matters worse when I was in hospital last week, I mentioned it felt like I had clots, but they didn't examine or scan my leg - just gave me 2 days of blood thinning drugs and then discharged me. The joys of modern day NHS!

Alysia

01-15-2014, 06:28 PM

Oh no Pete, I am so sorry for you :crying: what can I say ? The docs screwed up big time.... I send you my prayers and lots of hugs :hug2::hug2::hug2: please update us.

me2

01-15-2014, 07:16 PM

Alysia

01-16-2014, 04:05 AM

My thoughts are with you. Having been through horrific scenarios myself I can say there is hope. They do pass. I had brain stem involvement and suffered terribly. I could not walk to my mail box for a couple of years. Now, I can go on hikes and am pretty normal in a lot of ways I did not think possible. Hang in there and keep us posted.

Thanks me2 :love: sometimes, when I feel bad, it seems as if it will never end, and as if it will never be better again, which is a very depressing feeling :sad: thanks for giving hope and perspective :thumbup:

Debbie C

01-16-2014, 04:05 AM

Gilders,I am sooo sorry for all you are going thru:sad: I can't not believe the docs. ( well yes I can ) are playing quessing games. Have your numbers come down now ? I hope it doesn't hit your kidneys hard. If I were you I would give your ruemy. a piece of my mind and why did they send you home like that ...you should still be in the hosp. until things are straight. My prayers and hugs are with you.Keep us posted when you are up to it.

gilders

01-16-2014, 07:01 AM

Just got back from an appointment with my main WG Doc, he's actually my kidney Doc. My creatinine has dropped to 265, so a little higher than my usual average of approx. 220, but much better than the 315 from a couple of days ago.
He is quite certain that these recent bad kidney, potassium and high inflammation blood results don't suggest that this relapse is becoming more severe. The reason being that he would expect all those results to carry on getting worse if my relapse was also getting worse, but they have been jumping up and down. He also thinks that the recent reduction in Pred would not have such a dramatic effect on my creatinine level within a couple of days of the reduction.

He can't say why my body seems to be getting battered from all ends, but at least it looks like this relapse isn't suddenly becoming more aggressive.

I also had the district nurse see me today. She's shown me how to administer the anticoagulant drugs. It was the first time I've ever injected myself with anything. It felt very strange sicking a needle in to myself.

So the plan now is to carry on with pred and aza and wait for an improvement or wait for this flare to get worse, at which point stronger meds will be used. This has been the basic routine for the last 3 1/2 months. I do think that other Drs might take the approach of - even though this relapse isn't getting more severe, it's also not improving, so let's beat it in to remission with something stronger (RTX). I just hope holding off the big guns (RTX) isn't due to financial reasons.

me2

01-16-2014, 01:34 PM

Gilders, Thanks for the update.
I'm glad your creatinine is moving in a good direction. There can be tricky things happening. I wish I could give you the guide through them but sometimes it is not clear.

I injected myself daily with Enbrel for over a year. It was freaky and scary in the beginning and then it eventually became old hat. I could easily become an intravenous drug user now.

I don't know how your medical system works but Rituxan seems to be standard treatment HERE for relapse and refractory WG. This seems to be what you are experiencing .
Keep us posted,
Kirk

Alysia

01-16-2014, 06:27 PM

Hi Pete,
thanks for the update. I am glad things are less worse then before. it was scary. :sad:
I don't think that waiting is a the best option now. you are already waiting too much. rtx is not working immediatly and it needs some time to influence. I don't think that it wil be wise to wait for worse. the more you get down, the more dificult it is to go up again.
can you get a second opinion ?

mishb

01-16-2014, 10:22 PM

Pete, I'm sorry that things have got so crazy for you..........I'm still don't like this wait and see approach though :sad:
I was hoping that 2014 was going to be an excellent year for you - and maybe when this month is over, it still will be. :thumbsup:

gilders

01-16-2014, 11:39 PM

can you get a second opinion ?

The Dr who saved my life 19 years ago and has always taken great care of me, managing every WG relapse well, is the one who sent me to a different hospital last week for a second opinion. I have managed all these years without the need of a rheumatologist. It was the most senior rheumatologist that, last week, decided against stronger treatment such as RTX, but wanted to reduce pred to see if azathioprine would start to get me into remission. He explained that Aza takes about 3 months to start working and as I've been on it for 3 months now, hopefully they'll be some improvement soon. If there is no improvement then will 100% confirm that the current treatment isn't working. At that point, he will then look at different treatment.
His plan does make sense, but what's the greater risk - giving me RTX now (with it's possibly side effects) even though I might manage without it, OR wait and see if the Aza and lower dose pred (30mg/day) will eventually start working before this flare becomes even worse.
I do think that NHS will only authorise the use of RTX for WG after every possible less expensive option has been tried.

So in answer to your question of if I can get a second opinion, it's the second opinion (in my opinion) that has delayed stronger treatment.

Alysia

01-17-2014, 12:12 AM

Ok. I understand. Now it sound more safe. So we all pray that the imuran will do the trick. Thanks for your update. Hugs to you :hug2::hug2:

annekat

01-17-2014, 04:24 AM

Pete, thanks for the updates. I've been less active on the forum lately so have missed some stuff. I'm sorry about your ups and downs but glad you seem to be OK with the current plan. Will be thinking of you, and hoping you feel better overall very soon.

Alysia

01-17-2014, 05:01 AM

I've been less active on the forum lately so have missed some stuff.
and we missed you Anne :)

Debbie C

01-17-2014, 05:18 AM

I'm glad to hear the numbers are staring to go down and just hope they keep going.What is up with the blood clots you had ?

gilders

01-17-2014, 06:23 AM

What is up with the blood clots you had ?

Hi Debra
On New Years Day I had an exceptionally bad day. I had done more than usual that day, including attending a soccer game and being stood in the cold for a couple of hours. I had to rest for the next few days and really didn't do anything - housework, dog walk, etc. A few days later I was admitted into hospital to have second opinions on what should be done with my current treatment that doesn't seem to be getting this recent WG flare into remission. I mentioned in this hospital that I was having pain in my calf which feels like when I had a DVT (blood clots) 18/19years ago. No investigations were done, but they did give me anti-coagulant jabs for the last 2 days that I was in hospital, then discharged me.
2 days later the pain and swelling in my leg was so severe I couldn't walk. I phoned 111 (a UK non-emergency medical number). They arranged an out of hours GP appointment which is at my local hospital. The GP was disgusted that I'd been discharged from the other hospital without any investigations and sent me straight to A&E. A&E kept me in, not due to my leg, but because blood results showed significant deterioration in my kidney function. I was put back on the anti-coagulant drugs during this second period in hospital and eventually had my scan 2 days later which confirmed masses of blood clots the full length of my leg, pelvis and likely as far as my chest.
I was discharged 2 days ago and have been having the jabs daily and also Warfarin in tablet form. I go back to hospital tomorrow to have my INR level (blood cloting rate) checked. If it's in the correct range I can stop the injections and just take the warfarin tablets.

Alysia

01-18-2014, 08:31 PM

how are you today, Pete ?

gilders

01-18-2014, 09:07 PM

Good morning Alysia, it's 0845 UK time.
I'm in bed with my tablet replying to a few new posts. As you know I've got a few things going on at once.
Firstly my WG. Yesterday, if anything, could be seen as an improvement as my nose wasn't bleeding much, quite a suprise considering it had understandably been worsening since I started the anticoagulants. Otherwise much the same - very tired, but not 1 WG related symptom had got any worse, so a good day really.
Secondly my frustrating heart arrythmias and eptopic beats. I had a very good day with mild, infrequent issues. I'm not holding my breath as occasionally I do have an improved day, but maybe the treatment to bring my potassium levels down has helped, or the anticoagulant drugs. The scary thing is that when I do get the painful, struggling pump feeling, it feels like how I'd imagine it would be like if a piece of my blood clot has just broke off and entered my heart.
Finally my leg and DVT/blood clots. I went for a blood test and my INR level is only at 1 so I have to continue with the jabs and tablets. I mentioned that I was concerted as my leg is rapidly increasing in size and is getting much more painful. The nurse was concerned, but said there is no other treatment than what I'm already on.
The last time I had a DVT wasn't as severe as this one and it left a lot of permanent damage. I hate to think how bad my leg is going to get before it starts to settle back down.

It seems crazy that a couple of days after I reply to a post on here about somebody who had a serious blood clot, I end up with a massive one, thankfully not in my heart or lungs though.

Alysia

01-18-2014, 11:40 PM

Hi Pete,
we have a difference of 2 hours beteen us. now it is 13:35 here.
it sounds that things are improving, although slowly. maybe the Imuran is already doing the trick. no nose bleed is a good sign :thumbup:
about the beeting heart issue, it can also be a cycle in which feeling it worse might make it worse because of the anxiety. maybe you should also try some meditation or relaxation techniques :unsure:
take care and continue to update. lots of hugs to you :hug2::hug2:

Alysia

04-23-2014, 04:37 AM

long time since you updated us, how are you so far, Pete ?

gilders

04-23-2014, 05:27 AM

Hi Alysia. Good to hear from you.
Just a quick recap - Oct 2012 I had a seizure and ANCA results were positive. For the next 12 months we we're sure if I was having a relapse or not as every other relapse I've had has been very aggressive and went straight to my kidneys. This time I was slowly getting worse and no kidney involvement. Sept/Oct 2013 I had nasal biopsy which confirmed relapse.
I started on my usual "relapse therapy" of high dose Pred and Aza which usually gets me back into remission fairly quickly. I actually started much worse from when I started treatment. By New years day I was very ill and my specialist (renal, but takes care of my WG) booked me into hospital and had rheumatologist take a look at me. I was under the impression that I was to start Rituximab, but instead, the rhuemy suprised me by saying lets reduce Pred and see what happens.
By Feb 2014 it looked like this risky choice was actually working and I began to see improvement in both blood results and general feeling. I did end up getting blood clots in hospital and they've really struggled to get my anticoagulant drugs at the correct level, partly due to an infection which antibiotics interfered with the meds and the bone marrow and bone extraction I had done today (I'll get to that in a minute).
March 2014 I seemed to hit a plateau and wasn't really feeling any improvements. In fact things were perhaps a bit worse as I was starting to get some slight nose bleeds and a little crusting/scabs in nose.
I also had another test to do with my breathing, which again (in basic terms) showed that oxygen wasn't getting transferred properly to my blood stream (I am still waiting on further investigations regarding this and my painful, eptopic heartbeats).
I also had a blood film done where they look at blood under a microscope. This has been repeated a few times and it keeps showing abnormal and immature red blood cells. As my blood cells are leaving my bone marrow (where they're made) too early, this might explain why I'm so tired and don't have enough oxygen in my blood.
I had a bone marrow biopsy today to try and find out what 's going on. I find out the results on May 7th which is our wedding anniversary - hopefully a good omen.
So as it stands there's still lots of questions to be answered.
I just want to find out whats going on then I can deal with it.
I've probably missed lots of other issue with my health. Since Feb I've had at least 3 hospital visits a week. In fact I've just remembered I had to see GP today as half of my right eye has lost it's whiteness. He said he wouldn't usually be too concerned, but due to WG he wants me to see an eye specialist.
I think the only specialist I'm not seeing at the moment is a gynecologist!
My iron levels are sky high at the moment (I have hemochromatosis) , but they don't want to treat it until everything settles down.

We're due to fly to Cyprus 6 days after I get my bone marrow biopsy result. I hope the result doesn't mean I have to miss this vacation. Both myself and wife really need it!

Sorry for the long ramble - a lot has gone on these last few month.