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JohnWBurns (@johnwburns)

Mycophenolate mofetil with Plaquenil

Autoimmune Diseases | Last Active: May 18, 2019 | Replies (8)

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@aimeenc

Hi @johnwburns & @colleenyoung! Thanks for adding me to the conversation @colleenyoung.

I’ve actually taken both cellcept & plaquenil & haven’t ran into too many side effects on either. I was originally put on cellcept for what my rheumatologist thought was cryofibrinogenemia & some other autoimmune disease (similar to lupus) that had yet to “reveal itself” according to my rheum. While taking the cellcept I also had positive wound biopsy results for livedoid vasculopathy.

The only real side effect I had from it was some occasional nausea. However, as with any immunosuppressive medication, I did get more frequent infections (colds & flus thanks to 2 young kids in daycare & wound infections too.) After 6-7 months on the cellcept, Coumadin, trental, & norvasc combo my bilateral foot wounds started to heal & were completely healed a few months later. A couple months after my wounds had healed, my rheumatologist decided to take me off the cellcept since I had been negative for the cryofibrinogenemia and the livedoid vasculopathy (LV) wasn’t necessarily an autoimmune disorder. However, a few weeks after stopping the cellcept I exploded with new ulcers & also started to develop pretty severe neuropathy in my legs & feet that just kept getting worse the longer I was off the cellcept. My rheumatologist was hesitant to restart the cellcept due to my open wounds & risk for infection & started me on plaquenil instead.

Now I’ve not had any side effects whatsoever on the plaquenil, but don’t think it’s done anything to help heal my wounds or prevent new ones from forming. But I have noticed the neuropathy improving lately, & as I write this, wonder if the plaquenil has had anything to do with the improvement??

Sorry for the long reply, but I hope this kind of helps to answer your question. I also hope this combo of meds will help with your neuropathy & sooner rather than later! Good-luck & keep in touch!

Aimee

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Replies to "Hi @johnwburns & @colleenyoung! Thanks for adding me to the conversation @colleenyoung. I've actually taken both..."

Since looking at these posts I’m beginning to wonder if there is any limit to the different flavors of autoimmunity. The line between them can be pretty blurry. I’m not sure that there is a smoking gun application of plaquenil on its own for neuropathy, but I suppose that that doesn’t mean it isn’t ever used for that purpose. It is used with methotrexate for some indications of Sjogren’s but I don’t think that neuropathy is one of them. So your doc isn’t doing to reintroduce the cellcept and he’s kind of throwing in the towel on the ulcers. Maybe he’s just giving the plaquenil more time. Anyway, that’s great that you caught a break on the neuropathy. I don’t think that it remits like that very often. You have half the battle won at least. Thanks for the info and best of luck.

Welcome back @aimeenc!

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