As you guys know, my husband has had 2 doses as part of the induction period for remicade, and was diagnosed last week with demyelinating polyneuropathy that the neurologist thinks is just confined to the peripheral nervous system. As a result, he has foot drop in his left leg, and per nerve conduction studies, his nerves due to demyelination are conducting slowly in both legs. We are still awaiting test results to see what other causes other than remicade it can be. In the meantime, my husband is due to have his next remicade infusion on Thursday.
Both the neurologist and the GI consulted together and came to the conclusion that he should try one more remicade infusion, and then do another nerve conduction study to see if things have gotten worse - if they have, that's it for the remciade, and they'll begin treatment for the polyneuropathy. The GI pretty much said if we decide to not do remicade, we are facing bowel resection surgery - as far as I know, my husband ascending colon and transverse colon are both involved, and we don't think he has any small bowel involvement - so I think that's about 1/2 of the colon. There will be 2 surgeries - one to remove the affected part of the colon, and he'd come back with 2 stomas (one for sm intestine, and one for large intestine to drain into). Once he's healed, and there's no active sign of disease, they'll do the re-connection surgery, and he'll have no stomas. Of course he'll probably have diarrhea for the rest of his life without 1/2 his large intestine. So, both options are grave.
Here's what we think we're going to do. We're going to:
1.) Talk to the neurologist and get a brain and spine MRI - make sure there are no indications of MS. If there is CNS (central nervous system) involvement, decline the remicade, and go for a planned surgery
2.) Ask neurologist in her experience, will one more dose of remicade, result in mild deterioration of his myelin sheath, or will it be major.
3.) If it takes longer than 2 days to get the MRI results, ask the GI if the remicade infusion can be postponed by a few days until we can be sure there is no CNS involvement
If there is no CNS involvement, and the neurologist thinks there's only likely to be mild deterioration, then, we'll go ahead and get the remicade. One week after infusion, we'll test his nerve conduction again, and see if things have gotten worse. If things have gotten worse, we'll start on 6-mp, try to lower steroid dosage, get IVIG for nerve damage, and refuse the next remicade infusion in 8 weeks. If by that time he's not able to manage with 6-MP and small (if any) pred, we'll go in for bowel resection surgery.
Do you guys think this is a sane course of action? Please help with your suggestions.
Husband with Crohn's
Diagnosed March 2003 Ulcerative Proctitis
Diagnosed March 2008 Crohn's & C-diff
Home now after being in hospital for 45 days
Canasa, Lialda, Vancomycin, Flagyl, Colestipol, Pred 80 mgs, Remicade (3rd infusion due 5/22/08), VSL#3, FloraStor
Still having problems, hoping for a remicade miracle
Need to get off the pred ASAP