Mycophenolate for autonomic neuropathy?
Hi All – has anyone been prescribed low dose Mycophenolate for idiopathic autonomic neuropathy? I did a quick search but thought I'd just post my question here. Maybe one of our fabulous volunteers has information?
Interested in more discussions like this? Go to the Neuropathy Support Group.
@runnergirl – There are a couple of older discussions from 2016 but I wasn't able to find anything recent. I think @athenalee has discussed it's use in a transplant discussion and may have some information to share with you.
— Is anyone here on, or been on, mycophenolate for PN?: https://connect.mayoclinic.org/discussion/is-anyone-here-on-or-has-anyone-here-been-on-mycophenolate-for/
— Mycophenolate mofetil with Plaquenil: https://connect.mayoclinic.org/discussion/mycophenolate-mofetil-with-plaquenil/
Have your tried using Google Scholar (https://scholar.google.com/) to find information? Here's the search results using the search phrase "Mycophenolate for autonomic neuropathy" — https://scholar.google.com/scholar?hl=en&as_sdt=0%2C24&q=Mycophenolate+for+autonomic+neuropathy&btnG=
@johnbishop – thanks for responding. You're always so helpful.
I hadn't gone to good ol' Google yet – Wanted to check here and StuffThatWorks first. I'll check out the link you sent though.
Thank you again!
Hello @runnergirl and thanks John. I’ve got three autoimmune diseases, I was diagnosed with Sjogren’s Syndrome as one of them, but my new rheumatologist isn’t sure. Anyway, I’m a liver transplant recipient and have been on Mycophenolate for 1.5 years now. And, my autoimmune disease caused PN and other symptoms just keep getting worse.
As with a lot of illnesses though, we’re all different. I’d suggest asking your rheumatologist their opinion on whether or not it may be suitable for you. Like most immunosuppressants, it definitely has its side effects. So you’re doctor will know whether the benefits outweigh the risks. There are other meds, such as Rituxan which are more commonly recommended. Have you started on any meds?
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…
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.
@athenalee that's good to hear about this acquaintance of yours, in that the med might be beneficial. Although I have not been diagnosed with Sjögren's, I do have other autoimmune conditions.
Thanks for the Smart Patients referral – I'll check it out.
"…endless cycle of tests and no solutions." says it best. I just sent letters to both senators here in California regarding continued research for peripheral neuropathy. We all need to be squeaky wheels so we can find answers!
Definitely! “The squeaky wheel gets the grease” is one of my favorite mottos!
I’m actually slightly hopeful as my new insurance is allowing me to get coordinated care. My new rheumatologist I saw on Monday has done far more labs than the last pathetic rheumatologist. And, after having a sore throat for much of the past eight months I finally have a referral to an ENT. The rheumatologist is also coordinating with my transplant doctor and new neuromuscular doctor. He actually called me today to review the labs returned and tell me about the ones pending.
Keep in touch and let me know how you do in your search for healing!
Thanks, @athenalee – I wish you all the best!
I'll let everyone know how things goes.