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Is anyone here on, or been on, mycophenolate for PN?
Neuropathy | Last Active: Nov 21, 2021 | Replies (7)Comment receiving replies
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.
Replies to "Good question John. I searched all discussions using the brand name CellCept and found quite a..."
Hello John,<br />
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.<br />
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.<br />
I send my best wishes... <br />
Debi <br />
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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.