Cellcept and Cidp

Have you tried IVIG and/or plasmapheresis ?

Cellcept & Imuran are usually only used when IVIG, steroids & plasmapheresis aren’t effective.

Kelly

I’m not sure if you’ve posted this before so please forgive me. But why only 5 IVIG treatments? That is usually a loading dose. Then you are put on some form of a maintenance schedule. Some people require multiple loading doses to see improvements.

Did plasmapheresis work at all?

Have you tried infused steroids instead of oral? They are reported to have fewer side effects, if that is why the dr’s want to take you off of them.

Kelly

Well then…

I think you need to have a long talk with your neuro. If you responded well to IVIG then that should be your long term treatment. I agree that taking you off of prednisone is a good idea, if you can handle it. BUT you need to be on another immunomodulator FIRST.

Cellcept is used as a last line of defense when IVIG, ‘roids & plasmapheresis fail. It’s a chemo drug. It comes with MANY more risks than IVIG, in my opinion, & possibly even more risks that prednisone (cancer being one).

I do believe Cellcept has it’s place but I don’t think it should be used on you at this point.

Also, if your dr thought you had GBS he should NOT have put you on steroids. Often times GBS & ‘roids do not mix & ‘roids tend to make GBS’ers worse.

Maybe you could call the GBS/CIDP Foundation & ask if they know of any dr’s in your area who are familiar with CIDP.

Kelly

I have been on Cellcept for 3 years now. I take 2000mg/day and also do plasmapheresis. This is what has worked for me. Prednisone/solumedrol didn’t do anything for me. I am doing good. I say hit it with a combo if your doc will do it. He/she should. Please feel free to private message if you have any other questions.
Damon

Damon,

I’m now (today’s the first day) on 2000mg/day and have been doing PE for 1 year now.

Is your neuro in OK or TX?

Gary

I thought Cellcept was the kind of drug you have to take for several weeks or even months for it to do its thing.

My sister takes it for a kindney xplant. the put her on steroids high dose and tapered that down until the Cellcept takes over.

To Keep her immune system down, she takes 5mg pred, cellcept and prograph.
Same mission but for different reasons.

Gary,
My neuro is Brent Beson at Integris Southwest in OKC. He’s good. I really like him.

Tim,
Your right. My doc said it would take about 6 months to start working. I estimated that it took my Cellcept about 7 or 8 months to kick in.

I hope you can get another loading dose of IVIG if it worked for you last time. I think you should find a neuro who has treated more CIDP patients than your current neuro. You need a neuro who has experience and knows how to treat CIDP.
This is a prime example of a neuro who has no clue how to treat CIDP. If IVIG worked he should have kept you on the IVIG not take you off of it.
see he probably thought he would give IVIG to you and then you would be all better (cured) and you would never need another treatment. But then you relapsed so he probably thought IVIG didnt work. But you should have been getting monthly IVIG treatments to keep you “good” as long as it was working.

I would suggest talking to your neuro to get back on IVIG and get monthly treatments because you will probably always need a mantenance dose or find a new neuro who has experience treating CIDP.

Good luck to you I hope you can get back on IVIG