My doctor has prescribed CellCept, a drug usually given to transplant patients. It is an anti-rejection drug. Has anyone else taken this to battle CIDP?
I found this old discussion using the search feature at the top right, Stiffback:
Hope this helps, but it would be nice if you got some newer responses.
Thanks. Not great news, but it helps.
Yes I have had this drug with no effect but pretty painful side effects like somebody is hitting my bones with a hammer terrible migraines but it effects us (sufferers ) in different ways good luck
I have been on Cellcept since July 2015 due to not being able to use IVG. I had bad reactions both times I tried it, and Neurologist won't try it again. Currently taking 1500 mg daily of Cellcept, half in am and half at bedtime. It seems to have helped me to stabilize my walking, although the bottoms of my feet seem number than I remember. They feel like the bottoms are rounded and I will roll out of my shoes.Thats the best I can describe the feeling. My legs are better., and the Dr is enthused. She stated that she does not intend to increase my meds at this time. At least I do not require a cane to walk any longer. I used one for three years and would not get up without it.
My biggest concern with Cellcept is that my Neuro had me stop taking Methotrexate, which I have taken at the same light dose for 25-30 years for RA. Said the two should not be taken together. My rheumatoid flares have started up again and now are more painful and limiting than the CIDP. I am in the process of setting appt to see Rheumatologist for the purpose of subbing another drug to replace Methotrexate.
I can't think of any side effects to the Cellcept that I have noticed at this point. Not sure of the price factor because I get the drug thru the VA.
I am still working at 71 although it is a desk job. I find that I tire easily and have to limit myself. Away from work, I try hard to stay active. I have a small cattle farm and try my best to keep up with the work required, but would not be able to do it without my oldest grandson's help. He has sure stepped up to the plate for a Junior in HS. I am very proud of him to show his work ethic, especially with the demands of school at his age. But, I ramble on !. Keep us up to date on your use of Cellcept . .
Will do. Still waiting for it through the mail. I have no problem walking, but all of my joints are stiff and my feet and hands are asleep. Good luck with everything.
I started CellCept last October (2015). Love it! But, I’m comparing it to Methotrexate which was a year long roller coaster of misery for me. I take it twice a day, 2000 total. You can’t/shouldn’t drink alcohol with it and I suggest increasing your water intake. Good luck!
Been on Cellcept for a year as I have had to give up IVIG owing to dermatological side effects. Am sliding backwards slowly on 500mg Cellcept and 20mg prednisone tablets daily. Can’t say I notice any side effects.
On cell crept for just over a year doing ok. I continue to receive weekly infusion of IGG alon with 100 mg Solu-Medrol
Cell Cept, aka: Mycophenolate, works for me.
As an immuno suppressor, it works in conjunction with the prednisone.
I take two 500 mg in the am, and two more at night. S. L. O. W. L. Y. Tapering off the prednisone , started with 1000mg via IV in the hospital 5 yrs ago, currently at 25 mg/day. I drop the prednisone dose by 5 mg only 2 or 3 times a year. Dr says the Mycophenolate is very important to both keeping my whacked immune system in check, and allowing me to taper down the steroids.
One note~ the FDA does not recognize any use for mycophenolate other than preventing rejection in organ transplants (do they even recognize CIDP??).
For that reason, Medicare will not pay for it to use in treating CIDP, so you’ll have to pay cash. I found an online pharmacy, Health Warehouse (no affiliation) who supplies my monthly rx of 120- 500 mg caplets for about $70, which is half of Walgreens price.
BTW …never had a single noticable side effect from cell cept. I’ve been on it for almost 5 years now.