Author Topic: Cellcept  (Read 1552 times)

newtosjs

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Cellcept
« on: September 15, 2009, 06:36:55 PM »
Anyone out there taking Cellcept? Based on lung biopsy results, my rheumatologist wants to start me on that after a month of High dose prednisone. The whole thing sounds pretty scary to me, after I read the post about it being used post transplant. Just hoping someone knows something about this medicine, and can let me know how I'll function while on it.

Babs659

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Re: Cellcept
« Reply #1 on: September 15, 2009, 07:29:21 PM »
Hi, Sarah.  Just type Cellcept into the search bar on the upper left and you'll get many hits of previous posts.... :)

genko_b

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Re: Cellcept
« Reply #2 on: September 15, 2009, 11:48:45 PM »
I have been on Cellcept for a couple of years and finds it helps me a lot with the neurological issues related to Sjogren's. There are a number of people on here who have tried it - type Cellcept into the search block up above and you'll see what everyone has to say.

Genko

harrigan

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Re: Cellcept
« Reply #3 on: September 16, 2009, 12:45:35 AM »
Hi Newtosjs - hope you found useful info on the threads mentioned.  My daughter is 16 and has taken it since she was 12.  It has helped enormously with her auto immune disease.  She has always been closely monitored and any sign of an infection has been looked into straight away, so I have felt confident that the problems that can and have occurred have been sorted out quickly.  Hope you find some reassurance, and that this new treatment will make a huge difference to how you are feeling.  XX Ailsa
Female, 54
Diagnosed with Sjogrens March 09; Rheumatoid Arthritis February 2010
Meds: abatacept, Methotrexate injections , Folic Acid, Amitriptyline, Ozepramole, Tramacet, Glandosane & Viscotears.

ErinG

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Re: Cellcept
« Reply #4 on: September 16, 2009, 10:03:38 AM »
I started taking Cellcept in April for my kidney involvement, and my kidney function has improved and stabilized since then.  It's hard for me to say if it has improved the way I feel because I was first started on a high dose of prednisone and I'm still tapering off it.  I've been noticing as I'm tapering down that some of my aches are coming back, as well as the dryness.  I know some people experience side effects from Cellcept, most commonly diarrhea, but that hasn't been the case for me.  I was recently switched to the generic of Cellcept but I haven't noticed any differences.  Overall my experience wil Cellcept has been a positive one. 

Good luck to you!

-Erin

Chickpea

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Re: Cellcept
« Reply #5 on: September 20, 2009, 03:46:26 PM »
I've been on CellCept for nearly a year.  I didn't find the adjustment to it too difficult, or the side effects too stressful:  a little tummy trouble, hair thinning and cold sweats.  Like others, it enabled me to reduce my steroid dose gradually.  It's an immunosuppressant which is just what we SjS people need because our immune systems are in overdrive - the aim is to put us into 'normal' range.  There are still concerns because suppressing your immune system makes you more vulnerable to infections etc.  You need to avoid people who are unwell, crowds and queues, and take extra care with hygiene.

My blood tests didn't reveal as much change as the doctors had hoped - and I've had months of anaemia - so I've come off the CellCept.  It's hard to tell which of many meds makes a difference, but over the past few weeks I've noticed that just about everything is worse than it was when I was on CellCept.  So I'd definitely say try it. 

Let us know how it goes with you and ask any questions you need to.  We're all happy to help!

Take care - Chickpea

genko_b

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Re: Cellcept
« Reply #6 on: September 20, 2009, 11:16:30 PM »
Like Chickpea I noticed a big difference when I had to come off the CellCept for surgery earlier this year. My neurological symptoms came back with a vengeance. I was glad to be able to get back on it. Right now I'm on Plaquenil, methotrexate, and CellCept, as well as numerous other meds for symptoms and other AI conditions.

I've had a flare recently of the neurological issues (balance, PN, vision issues, etc.), and the docs wanted me back on steroids, which I have really been avoiding with my bones being so weak. So instead they have upped the dose of methotrexate and will up the CellCept if the methotrexate increase does not help, and then finally put me back on steroids if necessary. None of those meds are fun, but the damage to the nervous system from the inflammation is worse. At least I can still crawl around in the dirt and weed my garden!

Genko

newtosjs

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Re: Cellcept
« Reply #7 on: September 23, 2009, 06:53:32 PM »
Thanks for all the great input from everyone. Right now, I am on Plaquenil and high doses of steroids until I have repeat Pulmonary Testing done in October. I work in a hospital, and they don't really want me to have that exposure right now, so am out on sick leave. My concern is that if the Cellcept causes immune suppressing, are they going to let me go back to work at all? This is all compounded by the fact that my oxygen saturation levels drop with any level of exertion, and so far, I am resisting starting on home oxygen. I just don't want to do that! I feel like I am already starting a slide down a really slippery slope, that just seems so final. So, thanks to you all for listening, I really appreciate any guidance right now.