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JohnWBurns
@johnwburns

Posts: 300
Joined: Jun 02, 2015

Is anyone here on, or been on, mycophenolate for PN?

Posted by @johnwburns, Apr 14, 2016

Is anyone here on, or has anyone here been on, mycophenolate for any reason? What are the side effects like? I was put on it for peripheral neuropathy yesterday. There is a very slim chance that it can cause lymphoma and other malignancies but I am concerned nonetheless.

REPLY

Good question John.
I searched all discussions using the brand name CellCept and found quite a few members who have been taking mycophenolate for a variety of reasons or were asking about its effectiveness. In the hopes of bringing the discussion to one thread, I’ll tag them here:

Tagging @gonefishinmt and @aimeenc who talk about CellCept as a treatment for skin ulcers from Lividoid Vasculopathy https://connect.mayoclinic.org/discussion/i-am-looking-for-outcomes-in-the-use-of-blood-thinners-in/

Here @dbdeer @buttons talk about it in a thread about Dermatomyositis https://connect.mayoclinic.org/discussion/dermatomyositis/

@012984 @lovelife100 @mom2mba @tatumk @broncomom @anon66768157 @xanderbam @css can talk about CellCept for a variety of other reasons from lung transplant to mixed connective tissue disease, polymyositis to nephrotic syndrome.

I look forward to this discussion.

@colleenyoung

Good question John.
I searched all discussions using the brand name CellCept and found quite a few members who have been taking mycophenolate for a variety of reasons or were asking about its effectiveness. In the hopes of bringing the discussion to one thread, I’ll tag them here:

Tagging @gonefishinmt and @aimeenc who talk about CellCept as a treatment for skin ulcers from Lividoid Vasculopathy https://connect.mayoclinic.org/discussion/i-am-looking-for-outcomes-in-the-use-of-blood-thinners-in/

Here @dbdeer @buttons talk about it in a thread about Dermatomyositis https://connect.mayoclinic.org/discussion/dermatomyositis/

@012984 @lovelife100 @mom2mba @tatumk @broncomom @anon66768157 @xanderbam @css can talk about CellCept for a variety of other reasons from lung transplant to mixed connective tissue disease, polymyositis to nephrotic syndrome.

I look forward to this discussion.

Jump to this post

Thanks, I appreciate that. I have a lot of confidence in the prescriber so I have no doubt that its an effective medication, although treating neuropathy effectively is elusive under the best circumstances. What concerns me are the potential side effects, i.e. blood and other cancers. Rare but there. Treating severe neuropathy appears to lead to hangman’s choices.

@colleenyoung

Good question John.
I searched all discussions using the brand name CellCept and found quite a few members who have been taking mycophenolate for a variety of reasons or were asking about its effectiveness. In the hopes of bringing the discussion to one thread, I’ll tag them here:

Tagging @gonefishinmt and @aimeenc who talk about CellCept as a treatment for skin ulcers from Lividoid Vasculopathy https://connect.mayoclinic.org/discussion/i-am-looking-for-outcomes-in-the-use-of-blood-thinners-in/

Here @dbdeer @buttons talk about it in a thread about Dermatomyositis https://connect.mayoclinic.org/discussion/dermatomyositis/

@012984 @lovelife100 @mom2mba @tatumk @broncomom @anon66768157 @xanderbam @css can talk about CellCept for a variety of other reasons from lung transplant to mixed connective tissue disease, polymyositis to nephrotic syndrome.

I look forward to this discussion.

Jump to this post

Hello John,
I have been using mycophenolate 500 tabs for about 6 months for a combination of dermatomyositis (dms) and interstitial lung disease (ILD). My rheumatologist prescribed it, and when I tried to have the rx filled, I found that my insurance (Medicare and Blue Shield PPO) would not cover it, thereby making the brand name cost me $1400 per month for 60 tabs. Well, no. My darling pharmacist sent me to Costco, where I now pay $47 for 90 tabs per month. Medicare, Blue Shield and the FDA flatly said NO to covering any or all of it.
I have found absolutely no difficulties with it other than occasional constipation.  I can deal with that. It does take at least 6 months for the effectiveness to show up, according to all I have read. I am dealing with a short life span at this stage, and if this medication slows down the progression of the illnesses and gives me a bit more time to do the things I want to do, I’m on board.
I send my best wishes… 
Debi   

So nice of you to respond. Apparently Costco is one of the last ethical companies out there. Many times I fill a scrip there without insurance and its still cheaper. Good tip on this one, thanks. I’m on my second recurrence of prostate cancer so any reference to cancer, like the lymphoma and blood cancer side side effects, however remote, gets my full attention. With Sjogren’s syndrome the probability of getting lymphoma goes way up anyway, why I have no idea. But, this one of just a few options to treat the neuropathy so here goes. The quality of life thing after all. I’m sorry to hear about your problems. It can be easy to forget that there are other people out there that are up against at least as daunting obstacles. Don’t be too fatalistic and make time to nurture yourself in any way you can. I wish you the best.

John I have been on cellcept for over 5 years. I have dermatomyositis with ILD for over 13 years! This drug has kept my disease under control. I was taking 2000 mg per day but I was in so much pain doctor reduced it to 1500 mg see if that helps. My insurance pays for it.

@buttons

John I have been on cellcept for over 5 years. I have dermatomyositis with ILD for over 13 years! This drug has kept my disease under control. I was taking 2000 mg per day but I was in so much pain doctor reduced it to 1500 mg see if that helps. My insurance pays for it.

Jump to this post

Well that’s reassuring, thanks. I’m on 1000 mg but have no idea whether he’ll raise it. Supposedly it takes at least 6 mos to work so patience is required. The way things have been in the last few years, if there is a side effect I’ll get it so I’m hoping for some luck. Wish some for you as well.

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