just out of hospital with new meds

[DAVEY8105]

I was diagnosed with WG in May 2007 and have been treated with Cytoxan and Prednisone until 4 days ago when my Doc called to meet him at the hospital because my lungs were so inflamed. They treated me with 1000 mg of Prednisone for each of three days; a Rituximab infusion; and a Cytoxan infusion. I am now back home but my hands, feet, face are really swollen and sore. I am having strange mood swings as well. Hard to keep a positive attitude..... Can/does this disease go into remission? Is it ever possible that it can go into remission and not come back for a long time, if ever? Guess I just need some encouragement..........

[Twice]

Hi Davey,

Yes, it does and it can. I don't know any statistics, but I get the sense that, perhaps even for the majority, WG is a 'one hit wonder' and that after initial successful treatment, it goes away and stays away. Some people even come off all meds completely and never have another flare. For some of us, though, it never really seems to go away completely. Even so, in over thirty years I've had some long long periods of 'remission' (although I've never got off meds), the longest being nearly ten years. In that time I've had three major episodes and any number of mild flares, but it really is worth working at. I've just turned 40 and I work full time and have a great life.

That said, I reckon it's always best to assume that you will get 'cured', and that your life can return completely to what it was (or very nearly).

Stick with it. It's really awful when it's going on and I know all too well what it feels like when the docs are filling you with what seems like every drug they can think of. When I was about 20, I remember a time when I was getting IV pred, oral cyclo, IV cyclo and Immuran all at once and my doctor sat on my bed and said "I'm sorry, there's simply nothing more we can give you." Pretty depressing, but I stuck with it and, as though out of nothing, the WG just seemed to give up, and very slowly it went away.

I just let myself get really really really really angry with it. Stick with it Davey. Sending you positive vibe stuff,

Sarah x

[andrew]

Hey there Davey...
I was dignosed in 2003 and am not in remission yet. That doesn't mean I feel like poo, it's quite the opposite. I feel fine, pretty much the same as I did prior to getting sick (well, as near as I can remember). I lead a normal life except that I take a few pills each morning and see the quack every few months for a checkup.

What I'm saying is that if you pin your hopes on 'remission', it could be a long wait. Work on feeling better and you'll get better results Yes, many of us do go into remission and sometimes it comes back but having remission as a goal is counterproductive in my opinion. Take small steps towards feeling better and even just feeling happy and smiling and you'll make progress.

Feel free to post here if you need encouragement/advice or just want to vent. I hope you start feeling better soon

[DAVEY8105]

Thanks so much for the encouragement! I really do try to look at it that way.....I know there are no guarantees in life, but boy, some days we need other people to remind us that life is mostly good despite a few setbacks. Thanks again!

[Jack]

I used to have occurrences of Wegener's all the time until my medication was changed to Micophenolic acid and Prednisolone (from Cyclosporin and Prednisolone). I have now been in remission for around eight years. However, I'm not exactly fit and healthy! I live with the legacy of 20 years of Wegener's damage and drug side effects (mainly from prednisolone) and I probably look 15 years older than I am.

[Twice]

<b>I probably look 15 years older than I am.</b>

Gah. A couple of years ago at a party one of my oldest brother's friends mistook me for my mother. My brother didn't seem to understand my epic sulk!

[Maikeedio]

I was diagnosed 11 1/2 years ago at the age of 19, and my case was very severe (life support, plasmapheresis (sp?) and all). I was on Prednisone for 6 months and Leukeran for 1 year. I have been in remission and off all WG related meds since I took the last chemo-pill. I can honestly say I'm not too bothered by the WG in my everyday life.

However, I HAVE had a bunch of medical problems, and I'm not sure if any are related to what happened all those years ago. I've had gall stones w/ gb removal, have Crohn's like symptoms, had a blood clot in my lung, melanoma, pleurisy and shingles. Like I said, don't know if there's a connection, or if I've just been cursed with a lousy health.........!

But yes, you CAN go in remission, and so far I've stayed there. My doctors still can't quite agree on whether I have WG or MPA, but WG was my original diagnosis. I was told the first 7 years are the critical ones. If you go that long w/o relapsing, there's a bigger chance it won't come back, but I guess nothing can be guaranteed.

BTW, does anyone know the numbers of WG patients in the US? In Denmark there's only about 200, but there's also only 5,4 million people in the entire country, so I assume the number is considerably higher over here )

[Jack]

I think there is still a great deal unknown about the effects of Wegener's. Although I have not recently had a relapse, I have had constant medical problems since being diagnosed (20 years ago). It seems that there is always something new to be investigated, puzzle everyone, then, with luck, fade away. Only to be replaced by something else.
Many of these problems may well be side effects of all the medication I have to take, but I suspect that many are Wegener's symptoms. My latest problem is weight loss and considerable muscle loss in my legs. A real nuisance because it is making walking very painful, but none of the tests to date have indicated the cause of the problem.

[Terry]

It's interesting to see two others posting in this thread who live in my state. Maikeedio, I'm in Kitsap County, where we have a terrible shortage of Rheumys. The only Rheumy who practices here isn't taking new patients. I'm having to wait to see a guy with a practice in Olympia who comes to Bremerton twice a month. It's quite a pain (literally and figuratively).

Jack, are you seeing someone at U of W?

[Jack]

My consultant is Dr. Adu at the Queen Elizabeth Medical Center here in Birmingham, England. He is head of the Renal Department, but has a special interest in auto immune disease and runs a research clinic in conjunction with the Rhumatomatology Department. I'm lucky to be in a place where the doctors are interested in the condition and trying to learn more. I've had lots of students using me for their projects over the years!