Cellcept anyone?

[Mizamonie]

18 months into this infernal disease with my husband. Still can't find a rheumy willing to treat him (they all claim his case is too complex and that they have little to no experience with Wegener's), but his pulmonologist is willing to prescribe Cellcept. He has been on cyclosporine and methotrexate in the past. Lung nodules resolved on methotrexate but the vomiting was unmanageable. We are dealing with an atypical presentation involving huge, deep skin ulcerations which have never fully healed on the other meds. So my question is....has anyone reached remission on Cellcept?
Thanks to all who share so candidly on this site.

[crackers]

I've been on cellcept since 2008 and have had no flares.my only advice is beware of starting on too high a dose.i was started on cellcept in 2007 on 3 grams a day but ended up with pneumonia due to too high a dosage.i restarted on it in 2008 on a low dose which was increased gradually to my present dose of 2 grams and have had no problems.i hope it works for your husband as good as it has for me. john.

[Mizamonie]

Thanks for the feedback. I'm not sure what dose was prescribed as it was sent directly to the pharmacy. Are you on a generic or Cellcept?

[Wegetarian]

I have to say I'm curious how come Cellcept is so seldom mentioned in this forum. I was looking at a Swedish FB support group for Wegs and it seemed Cellcept was quite commonly used among them. (I can look for the link, but I doubt it will do much good as the discussion is in Swedish.)

[drz]

I have to say I'm curious how come Cellcept is so seldom mentioned in this forum. I was looking at a Swedish FB support group for Wegs and it seemed Cellcept was quite commonly used among them. (I can look for the link, but I doubt it will do much good as the discussion is in Swedish.)

It is used mainly when MTX or AZA won't or didn't work since those two are considered more effective. It is probably the most common third choice right now for treating GPA.

[Mizamonie]

Here's the good news, my dad speaks fluent Swedish. I have never before tried to find a Facebook page in another country but I'll give it a try. If you do find the link though I would appreciate it.
Btw....your icon is fabulous. Only hope it's not a self- portrait.

[Wegetarian]

Miz, here is the link to the FB page - its an open group so you don't even need ask for permission to see the posts:
https://www.facebook.com/groups/wegeners/

Thanks :) My daughter draw my picture, she did need some help in counting the fingers.

http://www.wegeners-granulomatosis.com/forum/new-member-introductions/3281-hello-europe-2-a.html#post72620

[pberggren1]

Where do you live Mizamonie?

[crackers]

Thanks for the feedback. I'm not sure what dose was prescribed as it was sent directly to the pharmacy. Are you on a generic or Cellcept?

i'm on a generic but have had no problems from being on the right dose. john.

[Mizamonie]

Coral Springs, Florida....just south of Boca Raton if you are at all familiar with the state.

[gilders]

Mizamonie, how's your husband's progress with Cellcept?
I can not take cyclophosphamide and my Dr can't get funding for RTX. He discussed mycophenolate (Cellcept) at a previous appointment. As it is highly likely I'm having a relapse (postive ANCA, likely WG showing on nasal biopsy, many symptoms that have returned) he wants to see me this week. I think he will start me on Cellcept.
It is strange that drz states that it is usually used when MTX or AZA doesn't work, as those are considered more effective. I understand that MTX should be more effective (but I can't take that due to severe renal damage), but AZA has always been agreeable with me. The reason my Dr said he wanted to try Cellcept instead of AZA is because he wanted a stronger medication for me this time.

[Mizamonie]

Starred Cellcept 2 weeks ago and decreased prednisone to 20. His skin lesions were worsening terribly so I called the doc and asked him whether we should increase prednisone back to 40 or try increasing Cellcept ( while I'm not a doctor in real life, I play one at home...lol). He increased my hubby from 500 mg twice daily to 1,000 mg twice daily. After reading some of the responses to my post I realized that the initial dose was quite low. It 's too soon to to tell if there's any improvement. Side effects have been heart burn, occasional fever and back pain. He has an appt with a rheumatologist on December 12th ( ha, ha....no rush Doc, he's just going to one one huge oozing wound by then). I'm going to call the pulmonologist tomorrow and see if he can call the rheum to get us a sooner appointment. I wish you luck and pray that Cellcept works for you.