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Cellcept

CathyN
0 Recommendations

Hi Everyone:
I just found this group today! I'm excited to have people to talk (so to speak) who also have MS, I was diagnosed in June 2007 at the ripe old age of 51. Unfortunately, I have Primary Progressive and there is not a lot of treatment options.
My New Dr. is at Vanderbilt in Nashville. I recently moved to Tennessee to be close to my Mother and sisters.
I just started Cellcept and I'm wondering if anyone else has tried this medicine and has it worked?
Thanks,
Cathy

Explore topics in this discussion:

CellCept Avonex Baclofen Tysabri Betaseron Copaxone Novantrone Lyrica Rebif

12 replies

WLD

Cathy,
I moved to Nashville a year and a half ago. I too go to the Vanderbilt MS Clinic. I am a 54 year old male diagnosed in October 1992. I have been on CellCept since 1/2/09. I have not noticed any improvement in the MS symptoms but I don't seem to be getting any worse. I have SPMS and have tried everything else. If CellCept stops the progression then that will be a very welcomed accomplishment. I would be interested to know how your experience goes,
Thanks,
Bill

CathyN

Hi Bill:
Thanks for the message. I tried the cellcept for 10 days and it made me really sick. I see Dr. Moses and he told me to stop taking it. He is recommending that I go on Copaxone although it talking with the Nurse from Copaxone it is not approved for PPMS. Dr. Moses now thinks I have PPRMS. I just finished 5 daus of IV steroids. That seemed to help for a week but I'm right back where are started.
I am thinking of changing to a different MS clinic.
What do you think? Who is your Dr. Where did you move from?
Regards,
Cathy

WLD

Cathy,
It took two weeks before my stomach could tolerate the CellCept. Now it's like taking nothing. I see Dr. Moses also. He has a great reputation but I am skeptical of all MS physicians. He doesn't do much for me. Dr. Schapiro's book is the best advice I've had.
I started MS treatment in Denver, then Kansas City, then last was Philadelphia. They are all the same. The constants are :
1. The cause of MS is unknown.
2. There is no cure.
3. It affects everyone differently.
4. The treatments for the symptoms 'may' be 50% effective at best and for only 'some' patients. I take Baclofen and Lyrica.
5. I've tried Avonex, Rebif, Betaseron, Copaxone, and Novatrone to "Slow the progression of the disease" whatever that means. I could not tolerate any of them.
Many people have luck with them. I didn't. Keep trying new things but be careful of those with anecdotal evidence, i.e. 'Bee Stings', 'Java juice', 'Coffee Injections', etc. If they make you feel better go ahead, but don't pay a lot of money. There are a lot of cons in the MS business. All the doctors want an MRI too. It makes them feel like they're tracking something. I know you didn't ask for it, but my advice is to keep positive. I won't play basketball with the middle-age guys on the Fourth but I can play pinochle with the 70 year old folks. Keep having fun and that seems to be the best treatment for the MS. Good luck!
Bill

CathyN

Hi Bill:
Thanks for the advice. I have scheduled an appointment with Dr. Robert Fallis who is with St. Thomas Medical Center in Nashville. My appointment is this Wed. July 1st. I'll let you know how that goes. I understand that he is also highly thought of and is a Member of the MS Society and on their recommedation list of MS Nuerologist.
I moved to Tennessee last October from Chicago. Loved my Dr. there, but my most of my sisters and my mother live in this area. It's nice to be close to family, although my daughter lives in Chicago and I miss her desperately. As soon as I feel better I'm going back for a visit!
I'm with you on the 4th of July! I will be watching the festivities from the sideline. I am a very positive person normally. Up until 3 yrs ago I was a daily runner and in 2006 ran the half marathon in Nashville. So it's been a huge change to not participate in the "fun" stuff. Especially when you are diagnosed at 51 yrs old!
Take care and be well,
Cathy

MartaPytel

Hi, I'm 46 and had MS since I was 12. My parents and doctor decided not(?) to tell me but I found when I was 36. I've had Rebif but was taken off that after 3 years. Now I've had some physiotherapy but that's about it! Any good ideas, please?

Marta

CathyN

Hi Marta:
Thanks for your message. I have decided to see a new MS Neurologist. My appointment in July 1st. I'll let you know if he has any magical suggestions. What kind of MS do you have? RRMS, SPMS or PPMS?
Cathy

lkay

Hi Marta,
That is some story - if you ever want to share the rest of why this was kept a secret from you and how you found out, I would love to know the rest. I would have been so angry - are you?

Your neuro should try one of the other drugs - maybe avonex or copaxone. If those don't work, you could always try Tysabri.

And there are oral drugs about to be approved for use - I think that will still happen this year.

Don't let your doctor give up on treating your ms - you have a long life ahead of you and you want to be as healthy as possible.

my best,
Laura

MartaPytel

PPMS. No particular drugs just antidepressants and sleeping pills.

I was cheered up last week when we went to see Spinal Tap (takes me back to helthier and happier days). I've got last shrink apointment now so must go,oop, in 3 minutes!

Love

Marta

CathyN

Hi Marta:

I totally agree with Laura. If your current neuro Dr does not put you on medication maybe you should consider another Dr?

Are you having exacerbations? What were the results of your spinal tap? Those results should convince your Dr. if you should be on medication.

Be happy,
Cathy

dees

I also was on all the tx's, including Novantrone. Celcept didn't work either.
My trusted friend is part of a phase III clinical trial for an oral medication. She was highlighed in last wks newspaper.
Unfortunately she hasn't seen any changes in her health.

MS affects everyone differently, but at least it's comforting for me to know I'm not the only MS pt with a G-Tube. Seems it's one of those things MS Societies want to keep hidden.

CathyN

Hi Dees:

I'm sorry...I'm not sure what a G-Tube is?

Cathy

MartaPytel

Cathy, the Spinal Tap I wrote about is a band! I did have a spinal tap jen I was 12 when tests were being done and it was very painful and couldn't walk or bathe for a few days. Right now, 33 years later I just want to top myself after paying bills owing.

You take care

Marta

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