This Is MS Multiple Sclerosis Knowledge & Support Community

My mother has has MS for many years and her doctor has recently given her Cellcept alone to take. But after reading up about it I've seen it's used for transplant patients and has so many side effects it can only make her worst. Has anyone got any information about this or experience???

I was put on CellCept just last week myself. There have been several trials which indicate that the drug can be helpful when used for multiple sclerosis.

CellCept does carry with it significant side effects, but so does virtually every mainstream drug used for the disease.

I've come across several patients on various MS forums that say that CellCept has really helped them. I'm hoping that I will soon be one of them...

marcstck wrote:I've come across several patients on various MS forums that say that CellCept has really helped them. I'm hoping that I will soon be one of them...

Best of luck and please let us know how you go.

I have PPMS and have been on Cellcept for four and a half months now. I started with one 500mg tablet per day for the first month then increased one pill a day every month. I am now at full dose of four 500mg tablets per day. When I first started, I felt a dramatic improvement but it only lasted about 10 days then subsided. Four months into this, I do not really feel any better but no worse either. Hard to say if it's helping since my progression is so slow. No side effects at all. What kind of side effects have others experienced?

My husband Gary has Devic's, but dx'd with MS for many years. Same stuff different name basically. We asked for Cellcept. What you read in side effects are based on a person with a normal, healthy immune system. Just remember that when you read any type of drug used to "lower" an overactive immune system. Also, Gary took 250 mg twice daily, for a while. DR decided to boost him a little higher on the 500mg twice daily. He did worse then. Has recently backed down to the 205mg twice daily. Doing better. He is coming out of an attack right now, so hard to tell how much better / worse he is on the lower dose. The only thing about Cellcept is that you need to have your blood monitored monthly to make sure your platelets don't bottom out. Gary had trouble when on the 1000mg daily. 100+ fever. Went to the hospital and found out he had a bad gallbladder and a HUGE kidney stone. He had to get off the Cellcept in July for the kidney stone busting. It was Dec. before he got back on it. In that time, with all the trauma to his body, he had an attack.

marcstck,

How long is it taking for the CellCept to start working on people and exactly what does it do?

gwa

Sorry, not sure how long it's taking to help people. For that matter, I'm not sure if it even is helping anybody. Initial trial results have seemed positive, but I'm not certain that anything has been officially presented.

Additionally, I believe the only trials currently being run on CellCept are using it in conjunction with one of the interferons on relapsing remitting patients. Since I'm PPMS, this is really a shot in the dark.

Can't report any dramatic results. I started out taking two 500 mg pills a day, which made me extremely fatigued and kind of achy. The doctor dials me back to one 500 mg pill a day, which has been easier to take. I'm supposed to resume two pills a day next week. As I said, I've not seen any benefit MS wise.

As for the mechanism of the drug, I believe it inhibits the production of both T and B cells, thereby resulting in a general dampening of the immune system. CellCept's approved use is an anti-rejection drug for transplant patients...

Cellcept is very slow to work. Neuro told Gary it would take about 6-9 months to really be doing its full potential. It took about 2 months to see any results. He also was taking a solumedrol shot twice monthly with this to kick it all into gear. He stopped the shot after 3 months. He reached the point where the steroid was doing more harm than good. He started the shot back once monthly when he was able to start his meds back in Dec.

Just wanted to post an observation about my experience with Cellcept. As noted above, I have been at full dose for a couple months now. Three weeks ago everyone in my house came down with the flu so my doctor instructed me to stop the Cellcept for a week. I did and immediately felt horrible, very weak and fatigued. I then restarted it and after a week now feel much better. My point here is that I have not felt any overall improvement since starting Cellcept but this episode makes me wonder if it really is helping.

Sometimes you don't know how good you really feel, until you feel bad.

I have been on Cellcept for almost 4 years, in conjunction with Avonex. The treatment has been very successful and two MRIs confirm this. Has anyone else had experiences with Cellcept that they can share?

Just ran into this info:

May 16, 2008 — The FDA today underscored the risk of miscarriage and birth defects in women taking the immune-suppressing drugs CellCept or Myfortic.

Those drugs are approved for use by organ transplant patients to prevent organ transplant rejection. They're sometimes used "off-label" to treat other immune system disorders, such as lupus, rheumatoid arthritis, and erythema multiforme.

http://www.rxlist.com/script/main/art.a ... ekey=89635