← Return to Mycophenolate for autonomic neuropathy?

runnergirl (@runnergirl)

Mycophenolate for autonomic neuropathy?

Neuropathy | Last Active: Feb 16, 2022 | Replies (8)

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Hi, @athenalee – thanks so much for responding and sharing your conditions.

It's my neurologist who has presented the options of Mycophenolate, low dose. I asked the same questions you have presented and am waiting on his answers.

I had 4 infusions of Rituximab in 2020 – no change in my autonomic neuropathy condition whatsoever, just some other side-effects that I'm still dealing with. Autonomic neuropathy (and all of the symptoms that go along with it) are my only diagnoses. I've also been on IVIG, which didn't seem to help at all either. IF, and only IF, the low dose Mycophenolate would work to treat the neuropathy, I'd be willing to risk it.

I'm working on doing a deeper dive into genetic testing to see if we can find some puzzle pieces to put things together…

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Replies to "Hi, @athenalee - thanks so much for responding and sharing your conditions. It's my neurologist who..."

I’m sorry Rituximab didn’t work for you. An acquaintance I know with Sjogren’s and a couple of other autoimmune diseases has had great success with the infusions and her PN went away. Mycophenolate might be worth a try, especially at a low dose. There are a number of journal articles referencing it for autoimmune diseases. Unfortunately, there’s just not much out there to control autoimmune diseases and PN.

There’s another patient discussion, mostly Sjogren’s and other rheumatoid related diseases, called Smart Patients. If you haven’t been on it, you might pose your question there as well.

Best wishes. I’d be interested in learning if you discover something that works for you. I feel like I’m stuck too, just an endless cycle of tests and no solutions.