Churg Strauss/EGPA and cellcept?

[karens62]

Does anyone have CSS or as it is recently renamed, egpa? I can't find a group for that specifically but you seem to have members here who have it. I have been on cellcept for 11 years with no remission, although it took 2 years to get off prednisone. My doctor has started talking about weaning me off cellcept. Has anyone been on it for egpa?

[Suzym2u Moderator Vasculitis UK]

We know quite a few members who have EGPA ( CSS ) but not sure if they have been given Callcept or been weaned of the prednisolone all together. I will make some enquiries for you. But I am sure someone will answer your question soon too. This page from the website discusses CSS and its treatments if it helps at all. vasculitis.org.uk/about-vas...

[laidbackreader]

I have CSS. I was diagnosed at the end of 2003. I have never been given Cellcept. I take prednisolone and azathioprine. I have tried reducing pred to nil and the disease always flares, but I have never been able to stop taking azathioprine. I'm currently doing ok (fingers crossed!) on a maintenance dose of 5mg pred with 100mg Aza.

[karens62 in reply to laidbackreader]

Are you finding any lasting or changing effects of these medications after such a long time? I find my sleeplessness is getting worse. I was getting very nauseated but I gave up the broad-spectrum antibiotic, and that helped. Also, the fibro type pain in lower legs and feet is getting worse. Good thing though, is I've not had neuropathy. Do you find your symptoms move around but nothing that you'd call a flare?

[Mitz]

I have CSS, I belong to a closed group on Facebook called "Churg Strauss Friends", I have found them absolutely invaluable. Its friendly and very informative. There is also another group on FB too which is just as good, I belong to that too, but find the one I stated wonderful. As for Cellcept, yes have been on that too. There are many on that site who know so much, some ex medical profession due to illness. They really do help a lot and give you support day and night. I hope you find your answers. I have not had remission, after 8 years of diagnosis I have yet to find a medication to work, remission does happen in CSS but I only know a few who has it, but symptoms with others seem to get a lot better. Best to join a group like Churg Strauss Friends you get a good overview of problems, drugs etc.

[karens62]

Thanks Mitz for the reference to the CSS FB page. I don't use FB, so that's why I tried this site. It's rare to find someone whose been taking Cellcept for as long as I have, so I don't have any idea if others face shifts in side effects, like sleeplessness and cramps.

[Mal06]

Karen hi I too have CSS - coming up 8 yrs since diagnosis. We do have a CSS friends FB group you can join, as well as many of us are on the vas uk FB group and other FB groups as well, the more info and support the better. Hope you're doing ok. Take care.

[karens62]

Hi Mal, I was diagnosed 11 years ago and have been doing fine. I went back to work; I'm a professor so have flexible time except for the actual teaching hours. I was off for two years and partial load for the next 3, but then back full time. I'm down to 60% now though as I find I'm getting more tired as I get older. That's why I was wondering if people find an increase in side effects from long term drug use. My sleeplessness, leg cramps, and fatigue are worse. I'm also 61 now, so maybe that's part of it too! Otherwise, I'm ok with no actual flares. thanks for the info on FB but I don't use FB. I prefer not to be visible, especially with my job. Best wishes, Karen

[1955-16-02]

Yes i am on cellcept and pred. I have churg Strauss. Dont seem to be able to get of pred. And have spent weeks in hospital this year with infections

[karens62 in reply to 1955-16-02]

Hi Mal,

Sorry to hear that you've been in hospital with infections! It does seem to be our weak link. I haven't had to be in hospital - just need to go to emerg or doctor's for treatment. Fortunately, I've been off prednisone after the first two years. My doctor tapered me extremely slowly. . How much cellcept and pred have you been taking? I started at 100mg pred and then 1000 mg cellcept was added when I got down to 50 mg pred. I got of the broad-spectrum antibiotic last year [septra]. It was causing continual nausea - on the other hand, I never ended up in the hospital with an infection.

I've just been able to start tapering, and since I wrote my first

comment in this list, I've also taken early retirement. I feel much

better without all that stress. Do you work?

Best wishes, Karen