Cellcept

[Guest guest]

Hi Ebony,I was on Cellcept for 4 weeks for systemic sarcoid (including cardiac) and then stopped b/c got a virus (cold). Will be going back on it after my surgery which is to be on January 25. The med was great for me. I had noticed that my left buttock/foot neuropathic pain from the sarcoid (SFN) had improved after 3 weeks. It usually takes 4 months to help with the sarcoid inflammation. It is a steroid sparing med (immunosuppressant) in my case and hopefully will help me to decrease my prednisone (have been on steroids for over 2 1/2 yrs) to a much lower dose. There are many possible side effects so your doctor should discuss with you. Every 4 weeks I will have (initially was after 2 weeks) a CBC and a CMP panel to make sure the med isn't adversely affecting me. Cellcept has been used on Lupus pts too but was first used I believe only as an anti-rejection med for people who received transplants.Hope this info helps...Blessings,BeckyEbonyWreh

wrote: Has anyone ever been on cellcept as treatment for neurosarcoidosis? How did it go?

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[Guest guest]

Thank you so much for replying. My BF was recently referred to a

immunoneurologist who put him on Cellcept and several medications

for nerve pain. It just seems that most people have taken it in

conjunction with predisone or some other steroid, but he is not on

any steroids at all.

He hasn't actually started the Cellcept yet becuase his insurance

requires preapproval for it. I hope that they will approve it and

that it works as well for him as it has for others.

Thanks again,

Ebony

Has anyone ever been on cellcept as treatment for neurosarcoidosis?

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> always stay connected to friends.

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[Guest guest]

Hi Ebony,You're very welcome. I'm glad I could help. Nerve pain is indescribeable. Any other questions please don't hesitate to ask.God bless you both,BeckyEbonyWreh wrote: Thank you so much for replying. My BF was recently referred to a immunoneurologist who put him on Cellcept and several medications for nerve pain. It just seems that most people have taken it in conjunction with predisone or some other steroid, but he is not on any steroids at all. He hasn't actually

started the Cellcept yet becuase his insurance requires preapproval for it. I hope that they will approve it and that it works as well for him as it has for others. Thanks again, Ebony Has anyone ever been on cellcept as treatment for neurosarcoidosis? > How did it go? > > > > > > > --------------------------------- > Don't be flakey. Get Yahoo! Mail for Mobile and > always stay connected to friends. >

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[Guest guest]

The insomnia and shakes got so bad that I stopped taking the cellcept

prescribed a few weeks back. That decision lasted all of a 36 hours

until the headache put me on my knees again. I had forgotten how bad

the headaches really were, not to mention the nausea. Despite the

undesirable side effects, the cellcept does help, or least it does for

me. I still get some minor headaches, another potential side effect

of the cellcept, but nothing even close to the ones from NS. So I'm

back on my rx. I'm hoping that some of the side effects will subside

once my body adjusts to the meds. If not, I'll just have to adapt.

Back to the doctor's soon enough...perhaps they can adjust the dose.

Peace to all, Tony

[Guest guest]

Tony, early on in my treatment I asked my neurologist if I could choose my poison. That's what it seems like.

Ramblin' Rose

Moderator

Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: CellceptDate: Mon, 02 Apr 2007 10:56:18 -0000

The insomnia and shakes got so bad that I stopped taking the cellcept prescribed a few weeks back. That decision lasted all of a 36 hours until the headache put me on my knees again. I had forgotten how bad the headaches really were, not to mention the nausea. Despite the undesirable side effects, the cellcept does help, or least it does for me. I still get some minor headaches, another potential side effect of the cellcept, but nothing even close to the ones from NS. So I'm back on my rx. I'm hoping that some of the side effects will subside once my body adjusts to the meds. If not, I'll just have to adapt. Back to the doctor's soon enough...perhaps they can adjust the dose.Peace to all, Tony

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[Guest guest]

Thanks for all of your respnses. Yes, I guess the banding does feel like a rubber band. He described as feeling like a really tight bullet proof vest is on, but with burning and tingling. This symptom had gone away so I hope it does again once the cellcept gets going. For the pleurisy, his doc prescribed a osteoarthritis medication called Limbrel. I still have to research it to see what it does. He hasn't had any workups for the arm pain. They basically just dismissed it as being associated nerve pain and that there was nothing that they could do. I am going to research it more though, especially since it gets worse at night which seems weird to me. I am wondering if some of his meds that he only takes at night is somehow interfering with something. I don't know. We'll see. Thanks again for all of your

responses. We both appreciate it. __________________________________________________