[barb02]

I had my appointment yesterday with 2 ms specialists and they decided after my exam and going over records, etc. that they were going to recommend to my neuro that I try one of the transplant anti rejection drugs. They also suppress your immune system. The one that they mentioned is similar to cellcept and used widely in Europe for ms, but is less expensive. Unfortunately, I forgot to get the name of it so I will have to wait until I see or hear from my neuro.

They also suggested that I try provigil (gave me some free samples). I also want to talk to my neuro before I try it.

They seemed to imply that tysabri was a rather agressive (their words) therapy for me, and stated they would not recommend re trying any of the other dmd's due to my reactions.

Their other suggestion is that I could try to get into one of the trials for one of the oral meds that are being examined, but I would have to travel to St. Louis (140 miles each way). There are 3 trials that are currently accepting applications for patients right now in the area. I am not sure I want to go that route.

I am not going to make any decisions right away.

They also stated that despite my residual problems that they felt my ms was mild, and that I had probably had it for years despite experiencing my first major flare last March. They based this conclusion on my number of lesions (6-brain; 1-spinal), one flare, and the fact that I performed quite well on the neurological exam. I was a little confused by this assessment, but it sounded good at the time.

So why do I have to use a cane to walk due to muscle spasticity and experienced a constant hug in my left rib cage in back?

They seemed more conservative in their approach, and also stated that they thought there would be oral meds for ms in 1 to 2 years so I just need something to help me until then.

[hollym]

My SIL takes cellcept for Lupus and Behcet's disease. It has helped her a lot. I think the less expensive drug is Immuran. She is going to switch to that.

[DM]

Hi Barb~ My DS takes 1000mg Cellcept in the am and pm for anti rejection of a renal transplant.
Yes, it does suppress the immune system, so his body doesn't try to reject.


I don't have any knowledge of it being used in regards to MS, but thought I'd chime in. Good luck...

[Natalie8]

I know that there are trials right now looking at the use of cellcept in combination with Avonex. I almost joined one right after I got diagnosed in the fall of 2007 but decided I didn't want to be in a study without having tried a standard therapy first. Turns out the interferon made me quite sick. The MS clinic I spoke to that was doing the trial said the doctor in charge had been quite pleased with some of the results-- but who knows, they could have been telling me that to convince me to join the study!

I have a friend who takes cellcept for lupus and an autoimmune blood disorder. She seems to tolerate it fairly well except for some digestive issues.

Good luck Barb making a decision about what to do. Wish I could give you more information.

[Riverwild]

No experience here Barb, just hugs as you go through this process of choosing another therapy...

[Koala77]

I've had no experience with this myself, but what ever drug you choose, I only wish you the best.

You've been through an awful lot, and I truly hope they find something your body can manage and that helps to keep this rotten disease at bay for you.

As you mentioned, oral meds aren't too far away and maybe they'll be kinder on your body. Maybe on mine too as I can't take any of the DMDs that are on the market so far, myself.

Good luck Barb. Let us know what you decide.

[FinLady]

Another person chiming in to give you a good hug. I have no experience with the meds you're talking about.

Best of luck with whatever you decide to do.

[tovaxin_lab_rat]

Best of luck to you Barb with whatever decision you make.

PS being a lab rat in a clinical trial is very interesting. I've been in one for over a year. I travel 450 miles each way.

There is a sticky at the top of the forum for clinical trials. Take a look. You can get lots of information about what's going on.

[marcstck]

I've been taking 1000 mg of CellCept daily for the last two months, in conjunction with monthly spinal injections of methotrexate, as a treatment for my PPMS. So far, I've seen no positive results, but as there are no proven treatment for PPMS, this isn't very surprising. I have read of other folks with RRMS taking CellCept and finding it very beneficial.

As far as side effects go, I find I feel very run down at times, and when I first started taking CellCept I felt nauseous for a few days.

Good luck with whatever treatment you decide on.