Cellcept For Multiple Sclerosis (Page 2)

cellcept was prescribed for me by neurologist for multiple sclerosis. Have had MS for 20 years and had symptom progression 2 years ago. Within 4 weeks I had almost complete turnaround with my MS disabilities. I could see better, was able to walk without my cane. I could swallow without choking. I speach and handwritting improved 100%. My doctor is with the Vanderbilt MS clinic. I have not been able to talk with anyone else with MS who has had such improvement. I have had no side effects. I must have CBC blood test every 6-8 weeks. Would like to hear if this is considered a break-through with other MS patients. I don't think FDA has approved cellcept for use in MS treatment.

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I think cellcept is a good choice. I didn't think of it as being any worse for you then the betaseron and copaxone.

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I'm in CT and Dr G is my Doc too. He wants me on the CEllcept as well looking for answers

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HI, I WAS DX WITH MS IN 1984- I HAVE HAD 100'S OF HYPERBARIC OXYGEN TREATMENTS SINCE 84- I WENT MANY YEARS WITH HBOT AND NOW STARTED AGAIN BECAUSE OF MS PROGRESSION OF BRAIN LESION- I JUST COMPLETED 40 HBOT AT DR. RICHARD NEUBAUER'S HBO CLINIC IN LAUD. BY THE SEA FL. ANY OTHER MS'ERS TRIED HBOT? THANKS BILL

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HI, SORRY I FORGOT TO MENTION THAT I HAVE NEVER TAKEN ANY OF THE MS DRUGS- I TOOK HBOT'S, DIET, EXERCISE, SHAKLEE VITAMINS-
MOST MORNINGS I WALK 3 TO 4 MILES FAST WALK, RIDE 21 SPEED BIKE, WORK OUT- ALL OF THESE THINGS ARE DONE WHEN I'M NOT IN A EXACERBATION AND MY FATIGUE WILL ALLOW ME TO EXERCISE- BILL

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I too have had breakthrough results with Cellcept for my Glomeruli Scelrosis. Similar diesease pattern, expect similar results for MS. For me (225 lb male), I needed to pulse 2 x 500 mg Cellcept with 5-10ms Prednisone to hit the sweet spot. Stable with no side effects for 2 years + now. Any others?

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Cellcept is now available in generic so cost has dropped significantly even if you did not have insurance.

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Stacy - I have been on Cellcept (2 x 500 mg with Pred) for years now and no side effects at all. In fact, I now have no real degeneration of any quality of life aspect and the disease's irrevesrsible degereration has been stopped. My disease (FSGS) is similar to MS with similar treatments. Like you, no "reload" possible. If I guessed wrong, I lost my kidneys. Fortunately, I did not guess wrong. Of course, every body is different. But worth seriously looking into. Good luck!

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I have had MS for 22 years and was additionally diagnosed with Myasthenia Gravis in 2005. I have taken 500mg CellCept twice daily for a few years and both my neuro and myself believe it is helping my SPMS. Latest MRI showed few, if any, new lesions. My progression has slowed dramatically, and I feel better than I have in years.

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to tell you the truth i have not taken anything since january 1st and i feel better than ever. of course if i have any slight symptoms i will call in the prescriptrion for cellcept but for now i feel great. sometimes i think the medicines make you feel worse. i have had no pain or numbness since taking nothing.

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Stacy - I agree on the "less is more" philospophy in general. I never took any drugs, or even went to the doctor, for the first 55 years of my life. I only went (reluctantly) when my ankles blew up to twice their size after finishing one of my routine 3 hour full court basketball outings with guys hal my age. But then I found out my BP was 235 over 175 even though I believed I was in perfect health!! Autoimmune diseases are something of a crap shoot. You feel great, then boom, not so good. You take some meds, nothing, but others you get remission . Whether to continue or not on differnt meds is as much a matter of faith and luck as it is logic. I happen to have graduate training and manage techinical areas so I have a grip on all this in my old age. I continue the Cellcept only because I think it increases the odds of avoiding a relapse which might prove terminal for my kidneys. If I had side effects, or if I was your age, I might not chance the longer term consequences. But no sign of those at this point. It will remain a crap shoot. Good luck with your situation and keeping looking for posts by others!!!

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I have been on Copaxone and Cellcept for 7 years now and have had remarkable results. I have had MS for 16 years. The course of the disease has been very aggressive. Before I started this treatment, I was about to go into a wheelchair. I was experiencing almost every symptom associated with MS and continued to sustain more and more damage (i.e. increased lesions). Once I started this combination therapy, within a year it was almost as if I no longer had MS and my last three MRIs showed not only no new damage, but also healing. I feel it is a miracle treatment and the closest thing to a cure.
Unfortunately, my neurologist cannot prescribe the Cellcept anymore and I am having difficulty finding a new neurologist to continue this combination therapy. They want me to only take the Copaxone and I do not want to do that. Without the Cellcept, I fear another relapse that I may not recover from. Another flare up could cause unforeseeable irreversible damage and symptoms which could cause severe problems to my life. It is difficult enough with the current problems, but to endure even more would create an unbearable existence and make life literally miserable.
I understand the other doctors may not want to take the risk associated with Cellcept, however, it is my risk to take. What I do not understand is how these insurance companies and the State of NY can make decisions for us. Not only is it horrible to have to change treatments, but to lose one of the best Neurologists is a tragedy. He has been a blessing to me and I do not know where I would be without him. Furthermore, I am extremely frightened to think about where I will be now. The State of NY just may have handed me a death sentence.

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I have primary progressive MS, diagnosed 20 yrs ago. I have been taking Cellcept 500 mg. twice a day for 5 years. I feel good but worry about the side effect Lymphoma. My doctor says you have a 1% chance of Lymphoma only after taking it 20 years. Has anyone heard of this before? I have blood work every 3-4 months.

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Doctors always seem to prescribe 2 x 500mg for everyone, 100 lbs or 300 lbs. I was on 2 x 500 for a couple of years, moved to 1 x 500 AM, 1 x 250 PM. I am 230 lbs. Suggest you consider decreasing if you are not morbidly obese. My opinion only, check with your doctor.

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I have been diagnosed with RRMS since 2001 and have tried Betaseron, Rebif, and Tysabri. My doctor wants me to start Cellcept for remission ,and I am a little apprehensive about it. Are there any side effects or any adverse reactions from long term use that I should be concerned about such as kidney, liver failure or other things.

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I have not had any issues with Cellcept over the years I have been on it, but a few have been reported. I am going to move the dosage down slightly on both prednisone and Cellcept since I have been stable for years at 7.5 mg and 2 x 500mg respectively (daily dosage). But I think you need to arrest the disease with higher doses initially, then taper off gradually. Opinion only, I am not a doctor. Good luck!

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I was actually prescribed Cellcept for my kidney and pancraes transplant, and did not realize this drug was also used for MS. I went and did my yearly MRI to find out that my lesions had ,in fact, gotten smaller since I was put on the drug. I cannot necessarily say if I have gotten better or worse, as far as symptoms go, as I have not seemed to have a flare-up in about 9 years. I had the transplant 6 years ago. In a weird sort of way I think I got sorta lucky being prescribed this drug by the transplant Dr, because it seems to be killing 2 birds with 1 stone, in a manner of speaking.

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I'm 37 and was diagnosed with ms january 2010.I tried Rebif and was unsuccessful, so I'm unable to take the interferon drugs.I've been on Copaxone since 5/2010.In march 2011 my mri showed more lesions even thought I have no symptoms.I've been getting chemo treatments monthly since 4/2011 and will be starting Cellcept 4/2012 when I finish with chemo.Nervous about side effects. Sun exposure?Infections?

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I have not had issues with either sun exposure or infection. I am out in sun quite a bit, and forget my sunblock sometimes, but no problems yet. I had two VERY invasive total hip replacements, dental implants, various other things. No issues as of yet. I am on 2 x 500 Cellcept + 10 mg Pred for ~230lb body weight. Could be different as that varies.

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Diagnosed with RRMS 1994 (but in hindsight after diagnosis I had warning signs such as double vision 10 years earlier while in college, doctor said too much college studying), started Copaxone ~1997 and used for ~3 years, had relapses and MRI showed increased lesion load, switched to Betaseron. Had a few relapses and transitioned to SPMS. Doctor added 2 X 1,000 twice a day Cellcept 7 years ago. Yearly MRIs show no new lesions and Neuro happy and says no progression. I am lucky that I have not had any side effects due to any of the 3 medicines. I walk with forearm crutches (started ~7 years ago) but happy to be walking. Started Ampyra ~1 year ago and did achieve a ~10% walking speed improvement.

I strongly recommend taking the medicines, eating a proper diet as possible and getting plenty of exercise. For those that say you shouldn't exercise, forget about them. They are the same ones that said I would be in a wheelchair 7 years ago). Know your body, challenge yourself to be the best you can be. Significant progress is being made to find a cure and a recovery method for deficits.

The above is just my humble opinion and I hope some of this information helps someone. Good luck, stay positive and please remember quitting is not an option.

All the best,
Dave

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I have been on 2000 mg/day of Cellcept for over 10 years for autoimmune condition. Before that Methotrexate (no help) and before that 80-100mg/day (extremely high dose) of Prednisone. Will never take Pred ever again.... did a number on my body. Cellcept keeps things under control for me; only side effect is constant craving for sweets but not to the same degree and constant craving for any food as the Pred.

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