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

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.

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.

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 />

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.

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.

Hi John @johnwburns, I'm not sure if you are still following Connect but I wanted to reach out to you to see how you are doing. You were one of the reasons I kept coming back to Connect to learn more about my conditions which has helped me become a better advocate for my conditions. Since we are entering the Thanksgiving week I wanted to start out by saying thank you for the guidance, the private messages and support you provided to me during the start of my journey with peripheral neuropathy.

I would love to hear an update and learn how you are doing. Hoping you have a Blessed Thanksgiving.