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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62

Like many on this thread, I too am a patient at Vandy and I am on CellCept. I take it for primary progressive MS which I have been managing quite well for about 13 years. I was resistant to taking any meds for a few years but then was put on Copaxone (for 8 years) when it was thought that I had relapsing remitting MS. That diagnosis was changed in 2011 by docs at Mayo Clinic, who diagnosed me with PPMS. I have been on CellCept for about a year and, unfortunately, I am progressing – more so than I feel like I have progressed during my entire time with MS. Is there anybody out there who took CellCept for their MS and found it to be of little use. If so, was it hard to get off of? Any feedback or insight is appreciated. Thanks!

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61

I too was taking Cellcept about 20 years ago along with Copaxone. I too had a remarkable turnaround. After 4 years I was taken off that combo and eventually was taking Tysabri. 5 years of tysabri then taken off because I had the JC virus. My MS is stable except for out of control pain. MS sucks!

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60

Hello.I had been suffering MS symptoms but didn't check n diagnosed until I had bad migraine attack last month.MRI report showed MS...it was shocking for me that I've been experiencing it for 15 years n still live my normal life.except fatigue...and left leg mild numbness.....doc. suggested me cellcept I'm afraid to use this med. I'm thinking I'm living normal life bringing my kids up cooking shopping n doing everything....so I should not use it :(

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59

Thank you for your reply and I hope you had good Holidays. I guess my hesitation to celcept is because I was tested for the PML antibodies and I tested positive. Have yhou been tested for the PML antibodies?

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58

Stacy - I've been with Dr. G for years and have been on monthly infusions of solumedrol and Cyclophosphamide (but always felt the cyclophosphamide left me feeling ill. Dr. G. mentioned cell cept and azathioprine as possibles and last visit I left with an Rx for azathioprine. After researching it, it scares me to death. Would love to talk to you about your treatments w/him - I know he is the best in the area, but would be nice to chat with someone. If you get this an are interested, e-mail me xxxxx@xxx {edited for privacy}

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57

I am also a patient at the MS clinic at Vandy. I have been taking CelCept for nearly two months now and I have also seen tremedous improvements. I have had no side effects and am THRILLED to have something that is helping after months and months of suffering!!

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56

Sandy

That is a great question, the dosage, I will have to ask my dr. I see her in July. Thanks.

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55

Thanks to all who have answered and it sounds like Celcept is great but I was tested positive for the antibodies that could lead to PML(deadly brain disease) has anyone tested positive and still used the celcept?

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54

I to read all the side effects of cellcept my daughter and I both take it. It is the best thing that has ever happened to me, no more pain, works wonderful!

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53

I was diagnoised with Primary Progressive MS in April 2012. I just turned 48 years old, & have been very healthy prior to this. My Neurologist is also at Vanderbilt MS Clinic & has just prescribed Cellcept for me. Like many others on this thread, my research made me very uncomfortable with it, based on the possible side effects. However, I am trying to be as proactive as possible in minimizing/stopping the progression. Thanks for your comments. I will go on faith and give it a try....

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52

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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51

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

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50

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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49

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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48

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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47

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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46

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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45

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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44

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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43

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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