My physicians and neurologists have done an extensive work up on me after being diagnosed with neuropathy and found no cause yet (they did everything you can possibly imagine incl. rarest autoimmune and antibody tests). The only culprit left is mesalamine since neuropathy can be caused by medications and I noticed an association with increased symptoms a bit after taking the dose each time, even though this is a rare side effect.
I've used the various mesalamine formulations (most recently balsalaside, mesalamine enemas and now apriso) for the past 20 years to maintain remission, along with diet, probiotics, etc. I switched from balsalside to apriso a few weeks back and the neuropathy continues so it is most likely the active ingredient, and I don't want it to keep progressing.
What I'm wondering about
is if I have mild to moderate UC and I now developed this intense reaction to mesalamine, what is left for me to do if I don't want to go on immunosuppresents and biologics? This is a real bummer as it was working for the past 20 years until a few months back. I can double the probiotics, but what else can I do to maintain long-term remission?
Saw my GI today and he does not want me to do a biologic/immunosuppresent and thinks this would be overkill given my hx. He suggested doubling the visbiome to 2 packets per day of the higher dose and was supportive of going off mesalamine due to the severity of my neurological symptoms.
Post Edited (Jane974) : 12/17/2020 9:11:28 PM (GMT-7)