Cellcept For Multiple Sclerosis

Updated

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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My mom has had MS for 25yrs, has been wheelchair bound since 1998, we tried Avenox, Copaxon, Betaseron shots, non help sum even gave her suicidal thoughts which she attempted, but luckly my sister found her and called an ambulance. My mom refuses to try the chemo type drugs, so her neurologist put her on Cellcept. we started her on 2 pills a day and she seemed to be losing her hair in the begining, but that stopped after about 6 months. We have not seen any improvements, and are only keeping her on it since she has gotten any worse. Happy to hear someone had such miraculous results.

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2

Primary Progressive MS

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3

Hi All:
My first response was NOT...I didn't realize this was the area to post a reply.
Linda:
I was very pleased to read your post regarding cellcept. I recently moved to Tennessee and my new Dr, is also at the Vanderbilt MS Clinic. I start taking cellcept in Mid Jan. I have been on Tysabri for 18 months and have to wait until it gets out of my system. I sure hope I have the same results as you've had! Congrat's!
Cathy

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4

I am secondary progressive, and have had MS for 28 years. I finidhed Novantrone and have been on cellcept for a few weeks. So far I seem to be getting a little worse. I am hoping this stops. I am tired of the drugs, I just want one to work.

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5

I was diagnosed with MS Nov, 2007 so this is pretty new to me.

For those of you who have had MS for years, what is your suggestion to me to keep myself healthy and out of a wheelchair?

I am currently taking REBIF 44 mcg. I am interested in taking a pill vs injections but it appears Cellcept starts off with a person getting worse before it makes you better and in some cases it appears, it doesn't make you better at all. I have had a conversation with another person who has also had this experience in Michigan; going from taking tysibri to cellcept and now says I wish I had not changed to CellCept and just stayed on Tysabri

I feel there needs to be more research done on Cellcept and MS before I will consider it's use. It appears to definitely be experimental and you have to allow all your other med's to expire out of your system BEFORE you can starting taking it. This allow the MS to become active again before it's being suppressed with a new medication. I'm not cool with that at all!

I have made the mistake of missing injections and trying to make them up. When I don't take my Rebif injection on the sheduled day I know that I missed that injection by day 3 because my left side is impacted with being able to walk becoming a challenge, my left eye vision gets blurred and grainy, my foot feels numb and my arm is weak. Then I have to play catch up. I could not imagine going a week or month without nothing before starting CellCept.

Has anyone else taken Cellcept?

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6

Gail,

Now that you have been on CellCept since May, 2009. How are you doing?

Carolyn

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7

I have been on cell cept for about 2 months I have felt worse, am I supposed to? Has anyone gotten better on the drug?

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8

I have been on Cell Cept for ~4 yrs - prior to, I was in the Hosp every 4 mos. Since CellCept I havent had an episode since I began. Knock wood, It seems to be working for me. I've had MS for 9 yrs.

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9

I have had MS for 10 years but pnly dx for 6. I have been on almost all of the injectables. Avonex was the only one that I had positive results with, until the depression became too severe. I was on Tysabri for 2 years with great results. I am now using cellcept. In 6 months I have had 1 severe exasperation. Now that I have beenn the full dosage for awhile, I am sufferring from depression and am wondering if it is related to the cellcept. Has anyone else had this happen?

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10

I have had MS for 8 years , not even I've never taken medicine before not a asprin for pain.
Now needle (shot a day) COPAXONE DOES GREAT then Dr. says my MRI states I need a stronger medicine says theres more spots now compared to last MRI now dr. wants me to try med like Tysabri, then I read up on it and opt out not worth the RISK. less than a week later phone call about CELLCEPT twice a day ummm here I am researching again , any help anyone?

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11

I was told the pill have to be taken with shots'
.At least hhere you can find out about the needle,medicine, pill,and combo the dr. pitch good luck all

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12

I started Cellcept Sept 09 and had ALOT of problems to begin with but I stuck with it because I could not take Tysabri or any of the ABCs because I had built up immunities to ALL of them. I was on the fast track to nowhere until this drug. After taking it for about 5 months all the sudden I went into remission and have been in remission since. I go for my MRI next week to see how things are going and hope to find good results since I am doing so well. I almost feel like the old me, which is something I have not experienced in YEARS! I thank God for Cellcept as it has given me my life back...if you are new to it, stick with it for awhile and wait to see if you turn around like I did. It is my miracle drug!

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13

I happened on this blog because my niece has recently been diagnosed with MS. I am 60 and have had FSGS (another autoimmune disorder) for over 5 years. Initially, I though I would surely lose my kidneys within a couple of years and had horrible symptoms. I spoke to 4 different clinical trial doctors, as well as my own Neph, and finally settled on a recipe that has driven my disease into relative remission for some 3 years now. Success came when I mixed 2 x 500 mg Cellcept with pulse Prednisone (about 20mg/day to start, now down to 7.5mg/day). I am 200 lbs so do the math for your own weight. The point is, try adding the pred to the Cellcept and see if YOU experience the same miracle cure!!

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14

I'm on Copaxone, have been on monthly pulse steroids for many years. Now my Doc wants to use CellCept with the Copaxone but my insurance, Secure Horizon Direct, has denied it twice. This is not an HMO, it is a Medicare PPO and we pay dearly for it. I'm not sure where to go from here. They arre denying it based on its off label use. Has anyone gotten this covered. My Doc even sent a copy of an article with the appeal letter.

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15

I got approved by my insurance co for Cellcept with Copazone. Tough taking medicine 3x a day after doing great on Tysabri. I have headaches, and more fatigue

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16

I was originally dx with MS in 2004 I've been on Copaxone since. I was put on CellCept the first time in 2007 because I had Uveitis and after a year and a half of Methotrexate it was not helping! My doctor thinks the Uveitis is FROM my MS so is all comes together. Unfotunately, SOMEHOW despite being on birth control I got pregnant. I lost my mind, freaked out, cried, because they told me I had to terminate because I had been on CellCept, but I had always wanted a child and I knew because I've been sick since I was 8yrs ould with autoimmune disorders I would never have one. Long story short, miraculously she was born HEALTHY! She is now two, and is helping take care of Mommy as I am going back on CellCept again because my Uveitis has flared back up and my doctor thinks it is the BEST medicine to try for someone with MULTIPLE SCLEROSIS. He is a true selfless Hero. If you are having problems getting your medicine covered, that is ridiculous, I have also had that problem, gotten letters signed by my GOVERNOR saying I don't need MS medicines! Our DOCTORS should have the final say what we need, not insurance companies, not the government! If anyone needs help fighting to get their medicines, you can try calling the MS HELPLINE 877-447-3243 They are there to help people with MS in any way they can! Or contact me, because no one should EVER go without the medicine they NEED! I've learned to stand up and fight for myself and I will fight for any of my fellow MS heroes. erinmlambert at yahoo. Maybe together we can find a solution. Two hole-y brains are better than one!! :D

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17

I have Scleroderma with lung fibrosis.I took cellcept for one year and it healped me very much with my breathing.I thought that I am in remission and I was advised to stop taking it for about 6-7 month.
This interruption resulted in a very bad relapse of my disease.
I started to take the Cellcept again for 7 month already but this time it doesn't help me anymore like the first time.
I would like to know what is the reason for this situation and if it is common .Is it there any alternative medication that would help as well?

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18

My doctor just suggested CellCept to me today. He also suggested the chemo drug Cyclophosphamide. I really appreciate all the comments on here about CellCept. This is going to be a hard decision for me to make, and hearing about others on the treatment will certainly help me.
Thanks Guys!

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19

I am on Betaseran and now my Dr. wants me to take CellCept as an addition. Does anyone know what the coast of CellCept is?

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20

i AM SO SCARED ! my dr prescribed to me friday. was on copaxone for 2 yrs then went to betaseron that didnt work so he gave me the script for cellcept and i have been reading up on it and i am scared. i am a 36 yr old mother of 2 and i dont know what to do but i do know you cannot hit the rewind button. i am from ct and my dr is suppose to be the best dr guarnaccia please i need advice

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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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