[rogerm213]

I am seeing my neuro this afternoon and he earlier had mentioned using cellcept. I failed to ask at that time if this would be in addition to the prednisone or in place of it. Is anyone out there taking both? What questions should I be prepared to ask?

[pingpongman]

I'm taking both. 2500MG cellcept and 20mg of Prednisone but tapering Prednisone. I was on 60mg but side effects were horrible. I think the cellcept has kicked in (after 8 months). The last 6 weeks have been great.
I took Imuran for one year but side effects were horrible. I lost 35 pounds.
Good luck
Mike
PS: These drugs affect each of us differently.

[AnnieB3]

I guess I would have an appointment with your primary physician to discuss all of this AND have a basic physical to see if your body can handle it. You should consider any family history of cancer, since suppressing your immune system can open you up to having cancer, including skin cancer if you're in the sun a lot.

Those drugs can not only come with "temporary" side effects but some pretty serious long term ones. I realize that sometimes they are a necessary evil but you need to be fully aware of any consequences of taking them.

Did you see the neuro? Are you satisfied with the discussion?

It is very important to always keep your primary doctor in the loop. Specialists like neuros are great but you need someone who can be the "quarterback" of your care and pull it all together while looking at your overall health, not just your MG health.

I hope you can make the decision that's best for you! Good luck.

Annie

[StephC]

Mike

Glad the last 6 weeks have been great!

What were actual side effects from the imuran - did it make you feel bad so you didnt eat and that was why you lost so much weight? do you tend to lose weight easily?

Stephanie

[pingpongman]

I am a normal 6ft male that weighs 165-170 most of my years. I am back to 165 on Cellcept. When I was on Imuran I was very nauseous. I could barely eat and went down to 135 pounds. When I tapered off Imuran I felt better for about six weeks then I had felt in a long time. But then my MG came back. I have not heard of anyone having the difficulty I had on Imuran as you know we all respond differently.
Went to my neuromuscular Dr. today and he said I was doing real well but he did not know if it was the CellCept or the IVIG treatments. Six weeks ago when I started feeling good I had just finished a massive dose of IVIG so he is really not sure what caused my improvement.
Mike

[StephC]

Whatever it is i am very glad for you it is!

[neutro]

Hi Rogerm213,
Pred, Imuran and Cellcept are all immunosuppressants and Pred is the fastest acting one. But because it has also some unpleasant side-effects, Imuran or Cellcept are also prescribed but you may have to wait for quite a long time (six months or even more for Cellcept) before they kick in. When they start to be effective, Pred is progressively tapered down to zero in the best cases.
Try to think that your treatment is a rocket, Pred is the first stage and Cellcept (or Imuran) is the second stage.
Mestinon minimizes the symptoms caused by the anti-bodies, the immuno-suppressants lower the production of anti-bodies by your immune system, IVIG and PLEX partially remove chemically or physically the anti-bodies in your blood system and finally thymectomy may act on the production site of the anti-bodies...
For further details on available therapies, see
http://neurotalk.psychcentral.com/post441175-8.html
I hope this will help you,
Maurice.

[rogerm213]

Thanks Maurice. I went through 5 plasmapheresis treatments right after being diagnosed on September 28th. I was really sliding down hill fast at that point and those treatments seemed to at least stop the slide. I still am taking 80mg of prednisone every other day and this is my 3rd day of cellcept and that dosage will continue to ramp up each week for the next 3 weeks. In December they hope to start lowering the prednisone dosage.

The mestinon is now 90mg with each meal and 180mg timespan at bedtime. I have regained 75% of my leg strength, the double vision comes and goes now with today being the best day I have had since diagnosis. My hands and arms still seem to be trailing behind and substantially weak. Still having a bit of trouble chewing at times as well.

Overall I have to say I am pleased with the results. The hardest part is figuring out how to take the cellcept on an empty stomach wait an hour and then take the mestinon and prednisone with food. I am thinking I may start keeping the cellcept on the bedside stand and take that as soon as I wake up. It will be even harder once I start adding the second dose of cellcept before dinner. I never was very good at keeping a schedule.