cellcept

Hi!

I am in the same boat, cellcept being suggested by rheumy as alt. to my long term chronic prednisone. Decision put off by me once, and once by him. My asthma is really a growing problem, and am no longer working, I retired on SSD this Sept., and am going to try to wean down prednisone one more time, but way slower. I decided after much research and asking for feedback from forum friends, and listening to both neurologist who suggested it first, and rheumy, that it is my next step. I don't go back to specialist until April, so I am keeping my fingers crossed.

hugs,

suetoo 

about 5 years ago I was having HORRID cognitive dysfunction frmo my lupus. I even gave up driving, as I would suddenly look around and not recognize where I was (even very close to my home where I have lived 30 years).

Imuran did nothing for me, and we tried a course of Cellcept. I was on the full dosage for about 18 months, and it was a miracle -- gave me back my brain! It even stopped a lot of the random inflammation I was getting on a daily basis.

Since then I have still had symptoms, but my blood work has been so very much better - inflammation rare. about 3 months ago I started having some cognitive/confusion difficulties again, and have started back on a Cellcept treatment. In just a month, while not yet ramped up to a full diagnostic dose, I am feeling better.

As to side effects -- the first couple of weeks I did have some slight stomach discomfort, and after full dosage for several months I had some thinning of my hair. But I considered that a very small price to pay to have my brain returned to me!

So, I had great results, no significant side effects, and I hope it works as well for both of you!

Linnwood and nancilee thank you both for you info. I pray it works for me. It would be great to feel semi normal again. I will continue to post as I try this. I pray for you all that you have good health. Life sure isn't easy with Lupus this much I do know. Thanks again and God Bless!

Yeap...Cellcept rocks.  I was on prednisole for 19 years and none of my previous rhumty able to wean me off from the Pred.  This rhumty started me the Cellcept approx one and a half year ago, and now I am totally off all the Prednisole.  I was hesitated to take the cellcept at first because I had severe reactions from Imuran, but I gave it a try and it works miracle on me.

 

I was diagnosed w/ SLE in June 2010 and started on Pred right away to get the severe joint pain / inflammation under control. Tried tapering off pre twice but first time had a major relapse and second time I developed a Vasculitis in my index finger - became dark, cold and unresponsive. was then hospitalized and put on high dose of pred. My rheum soon after started me on Cellcept to try to control the inflammation. I experienced major dizzy spells when on 2,000 mg/day but am doing fine on 1,500 mg/day. I have developed some sort of herpes infection with having a suppressed immune system. Exposure is highly inexplicable and test results highly inconclusive. I caution to be VERY careful about touching other people, sharing anything with anyone, and washing your hands excessively while on Cellcept. I've got a nasty cold right now and just got the pneumovax yesterday. this is a serious drug but I am almost off the pred and the inflammation seems to be under control, which is good. I've also been on plaquenil since June too.

I was put on Cellcept in '06 after my kidney transplant. I did have a lupus flare in '07, but I was and still am on prednisone (5mg/day). In '08 I changed to Imuran becuase my hubby and I decided we wanted to try for a baby. So long story short, after two years and a baby later, I am still on Imuran and prednisone. I think Cellcept worked well, but it did give me diarrhea. However, for me the Imuran works better, and the prednisone is only a "maintance" dose, according to the docs ( they say that its about what my body would produce, or something like that). And right now I am only on six different kinds of meds, the lowest since I was diagnosed in '95, and I refuse to meds/doses because right now everything is ok and I don't want to tempt fate.
Hope this helps.