Cellcept For Multiple Sclerosis
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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 have a question for you. I would imagine the blood test is to test for PML? I was tested to see if I should have Tysabri but because I tested positive for the antibodies they didnot want to start me on it because I had an increased risk. If one of the side effects is PML for the anti rejection patients is the dosage the same or less for MS patients? Also is the drug in pill form?

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You need to see a rhemetologist who deals with immunology, they will prescribe cellcept.

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Yes, Brett, that is oneside effect I experienced also, but easy to deal with. I have been taking Zolpidem (AMBIEN) for a couple of years now and sleep like a baby. Addictive? Perhaps but who cares. Everything is a compromise and the body and mind need sleep!

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I have recently been diagnosed with Primary Progressive MS. My Dr. is with the Vanderbilt MS group. He has me on Cellcept 1000mg twice a day. I have seen improvement in my mobility and endurance. I must admit I have taken there advice about more exercise and following a Mediterranean Diet. So I am not sure if it is the combination of all those therapies or if it is just the Cellcept. The only problem I have had is that I don't sleep as well as before.

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Dr just prescribed cellcept 4 me today...I have had ms since 1997. I have been on betaseron since 2012. I am scared of this drug but I have to give it a shot...PRAYING for great results!!!!


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Good stuff, Dave. On the Vit D note, I have been taking D for years, on some studies that show potential for autoimmune effect. For me, I favor "pulsing", meaning I take 10,000 or 15,000 IU once or twice a week with some calcium, depending upon how much sun I got that week. For most folks, 85,000 units is the worry level for toxicity, but I would not go beyond perhaps 20,000 IU unless you weighed a great deal. I am a believer in the upside of D

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My initial message is #39 if you want some background relative to my MS state. This is just a statement of what I do relative to sun exposure and not a recommendation. Also, an acknowledgement of Vitamin D supplements and usage of an RT300SLSA for home PT.

I have always been an outdoor person and now due to MS, I spend a lot of time around an outdoor pool swimming with a pool buoy. I am typically out in mostly sunny skies for ~2 hours per day ~30-40 days per year. I also spend ~4 weeks in the summer on the beach in S.C. with ~4-5 hours of sun exposure per day. I have average complexion and maybe because I have always spent so much time outside, I rarely burn. I don't recommend this but I have always hated suntan lotion & have rarely ever used it over the past 48 years. I do go to a dermatologist for a skin examination once per year to check for signs of skin cancer (last ~10 years). As I said, I don't recommend this sun exposure for anyone else and no doctor would be happy to read this but just a statement of what I do since you asked about sun exposure. Life is a balance and this just my choice.

One medicine I take but failed to acknowledge in #39 is really just a vitamin. I take vitamin D3 1,000 IU twice per day & Fosamax D 70-2800 once per week. I am guessing I started this ~5-6 years ago after I was diagnosed with Osteopenia. The osteopenia was a result of less than adequate load bearing on my lower extremities. The good news is after the vitamin D and usage of the RT300SLSA for home physical therapy, my last dexascan showed I no longer was in the osteopenia range for bone mass. Good news.

I also periodically take physical therapy at the Kennedy Krieger Institute in Baltimore, MD. While there, I learned of the RT300SLSA and began using the FES bike. I later bought a bike for home use. The bike is awesome for those with lower extremity mobility issues. Here are links for anyone interested in their products. The 1st link shows their multiple products, the second shows me using the arm bike for upper extremities, the 3rd link is an interview with Dr John McDonald. I highly recommend the 3rd link which talks about how past beliefs relative to recovery of deficits is a myth and his experience with Christopher Reeve. I strongly recommend the bike for many health benefits.

restorative-therapies.com/products
restorative-therapies.com/david_foster
restorative-therapies.com/drmcdonald

I hope this helps in some small way relative to knowing what you mean. To me life is a balancing act. I workout to stay healthy but life has to be fun also. Find your balance based on all available information and enjoy your summer with your children!

FYI My daughter is now 17 and I was diagnosed when she was 11 months old (I had signs of MS 13 years prior to being diagnosed). She leaves for college this fall and I never missed a summer on the beach with her and almost never missed any of her swim meets over the past ~9 years. Would she be swimming in college if I skipped the beach and pool days??? Have fun, stay strong and enjoy your children!


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I've been on Cellcept for many years and am in the sun pretty regularly (I have a beach condo in sunny Ixtapa Mexico). With or without Cellcept, it is a good idea for you (and your kids) to think about SPF and a hat if out there in the sun for very long. I have not really had any issues with Cellcept so far. I take it with low levels of prednisone. Good luck!

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I've been following this forum question for a few months now. I was getting monthly chemo treatments on top of the Copaxone shots daily. After 8months of chemo I just couldn't do it anymore! I called my neuro and told her I would like to stop the chemo and just start the cellcept now... I have an appointment in a couple weeks, so I asked if I could hold off on the Copaxone shots until then too. She didn't recommend it, but it was my choice. I stopped the shots. It's been 2 months since my last treatment and about a week since my last Copaxone shot. I feel sooooo good! No fuzzy head, no bloating, no depression, and my motivation is back!! I feel like myself again. I have absolutely no MS symptoms currently. So now I'm thinking I don't want to start cellcept and feel sick again. I pretty much always get the side effects. I'm fair skinned and know that I'll need to cover up from the sun while on cellcept. I just want at least one summer to enjoy the beach with my children and feel like myself. I'm eating better and actually wanting to exercise! For me the side effects of the meds are worse than the disease itself. Anyone know what I mean?

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My husband has had MS for 10 years. He goes to the MS clinic at UT Southwestern in Dallas and has been on Cellcept for 8 years. It has been great for him. He still needs meds to manage fatigue, indigestion, other symptoms, etc. But it has really stalled any progression of the disease. It's also now available in generic. Our insurance always covered it, but now it's more affordable.

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The MS center at Rush medical center in Chicago does all this cutting edge therapy (including Cytoxan which has helped my husband) and Cellcept which he will receive when done with the cytoxan. Unfortunately, the east coast where we are near NYC and Philly does not offer any of these life altering therapies. (I guesss it is po-dunk to live between NYC and Philly). I have heard there are specialists in Boston who will do this too but cannot confirm. We travel to Chicago where open minded neurologists exist. Dr Richard Burt at Northwestern in Chicago is running a trial for MS with astounding results of complete remission, however the treatment is radical (bone marrow ablation with stem cell rescue). But considering the results, it may be worthwhile. Unfortunately, my husband is too weak at this point to be considered.

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I too also see Dr. G and I also have MS. I was DX in March 2010, just 3 months before my 30th Birthday. I have been on Copaxone now for 1 year and i still have leasions. Dr. has just perscribed me Cellcept and I too am hesitant in taking this...so i am doing as much reading as possible.

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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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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 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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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 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 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 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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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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