Posted 9/6/2015 11:42 AM (GMT -6)
Remicade saved me big time, so I certainly understand not wanting to give it up! I felt that I had to stop. The two-foot stack of articles i read on possible adverse effects and their resolution reported that most adverse effects resolved within a year. That said, some effects didn't resolve (by time of publication), and cases continue to be tracked, including as more UC'ers are trying humira. (Others here have reported pains of various sorts that resolved within months of stopping remicade, as you noted, under six months, if you look at past threads.)
As for gabapentin, I think the daily dose for neuropathy pain may go as high as 3600/day. (i have one friend on that amount, divided into 3 doses, but not able to work, as you can imagine....). I couldn't find any studies that definitively showed a comparable marginal gain over 1800/day. You are taking four drugs that together may be the best relief you'll get for your neuropathy. Perhaps you could do a little bump up to 1800. Seems to me that's worth a try, especially since you can tolerate close to that already.
I was skeptical about prednisone helping my neuropathy. I think they don't know when/if there's an inflammatory component. I had to take prednisone anyway to address the lupus symptoms. (I was at 40 mg for a while and then tapered very gradually.) Can't say for sure whether it helped at all. If you look at our long thread (Severe joint pain, stopped remicade...), you'll see that Thoreau took 40 mg pred for a while, and it helped him briefly (but his symptoms were pains not diagnosed neuropathy). I wouldn't advocate taking pred unless it's really warranted, given the cumulative negative impact on our bodies.
You are trooper. Hang in there!
57 yrs old. UC >14 yrs after proctitus. For flares: Cortenemas, Prednisone, Uceris. Severe allergy to many drugs inc mesalamines (hives, fever), 6mp (fever), Remicade (it worked for 6 mos then stopped due to joint pains, Anti-TNF Induced Lupus, neuropathy). Flaring now & searching for UC meds & supplements. Highly restricted diet - broth, plain protein, rice.
Taking Asthma & esophagitis RXs too.