Beginning Cell cept

[petpuppy]

My neurologist is going to start me on 500 mg twice daily starting this Monday. I won't be using this with any other medications ie. steroids.
I hope he knows what he's doing.

[stillstANNding]

Hi petpuppy,

Changing therapies is often an anxious time. Here is some info on Cellcept that Mark posted when i was faced w a change:

http://brain.hastypastry.net/forums/showthread.php?t=6423

Scroll down to xo++

Best to you,
ANN

[ssusan]

Thanks for posting this thread, Petpuppy. I am supposed to have a new brain MRI to see what the Rebif has been doing or not after a year, and then probably start Cellcept.

I need to do something as MS is progressing, but it is scary. I respect you for having made the decision. I haven't been able to do it. Yet.

I look forward to hearing how you do on it.

Wishing you luck.
-Susan

[Lazarus]

Petpuppy.
I read Mark's response and it was a gift. I have one good friend on cellcept and, frankly, I forget what specifics she has told me. I'll give her a call today and report back.

It is so hard to make these choices. Once you figure out how to do that you dive into the waters and try to keep paddlng along. if you do that your doc will keep testing to monitor even the slightest changes in how your body functions. Before each novantrone infusion I go get a MUGA heart test at the hospital. My blood is tested before each infusion to check liver functioning/etc and infusion is not given if white blood cell count is off.

I'll ask my friend what tests they do to monitor her. Any other questions I should ask? (PM me if there is anything)
Linda

[petpuppy]

With Avonex I did not know there was anything wrong until my hands turned yellow but by that time the liver damage was so severe it took well over 2 years to recoup not to mention it ruined my thyroid leaving me to have to take synthyroid for life.
With copaxone I developed a rash but because I have ezemza and it looked just like it I didn't think much about it until shot two when the rash went all over my neck. I stopped pronto but the reaction got so bad my eyes swelled closed and I rushed to the ER where I was given predinsone.
So now I'm very anxious about cell cept. I just hope that I will get a warning like a mouth sore or what not right away so I know but I can't go through having a bum liver again.

[Lazarus]

I called my friend who is on cellcept but she was too busy to talk much. She did say that a nurse comes to her house once a month to test her liver function and other things to monitore her reactions to cellcept. That's really all I wrote down except that she had taken cytoxin for a few years and now takes cellcept and copaxone.
Linda

[petpuppy]

I just don't know if the risk of liver damage is worth it. I also don't know if my neurologist is up on his homework..... of course he's not. He has no patient on it and didn't bother go over the risks with me or tell me how important it is not to get pregnant. What a flake. I'm totally lost. I'll start it tomorrow because I feel i'm at the end of the line.