Crohn's, Remicade and Polyneuropathy

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PV
Veteran Member


Date Joined May 2006
Total Posts : 1177
   Posted 5/20/2008 5:40 AM (GMT -7)   
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.

Thanks,
Preetha
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


Sniper
Veteran Member


Date Joined Feb 2004
Total Posts : 6518
   Posted 5/20/2008 6:32 AM (GMT -7)   
So sorry you guys are going through this. looks like a sound plan to me though. Prayers that the remicade is not the cause and the surgery can be avoided...Let us know what happens.
If we would read the secret history of our enemies,we would find in each mans life sorrow and suffering enough to disarm all hostility.


bektold
Regular Member


Date Joined Jul 2007
Total Posts : 456
   Posted 5/20/2008 8:57 AM (GMT -7)   

It sounds like you've worked out a good plan.  The only thing I would suggest is that you might want to give the 6-mp a little more time if you go that route.  It takes a couple of months for this drug to reach full effect.  Seven weeks might not be enough time to know if it's going to help him or not.

Good luck to you both.


PV
Veteran Member


Date Joined May 2006
Total Posts : 1177
   Posted 5/20/2008 5:32 PM (GMT -7)   
Ok. We talked to his neurologist, and she says if it is the remicade, she would expect slow decline, not an immediate major worsening (but of course she didn't say it wasn't possible, just not expected). Also, we now have an MRI scheduled for my husband tomorrow afternoon, and she said she'll get the results and call us later tomorrow afternoon/evening. Hopefully we'll get the results we're hoping for with no central nervous system involvement. Also his blood test results came back - his vitamins (B-12 etc.) are fine, and he's also negative for whatever antibodies they were looking for (I think they were looking for antibodies to the myelin and axons).

We finally got through to his infectious disease doctor (for the c-diff) and she has taken him off the flagyl to make sure that it isn't causing or contributing to his neuropathy. So, if tomorrow we get good results from the MRI (with no CNS involvement shown), we'll proceed with the next remicade infusion. We also meet with his GI tomorrow morning to discuss this course of action.

I'm keeping my fingers crossed and hoping for the best, but of course I'm an anxious nervous wreck right now. I will be seeing a psychiatrist for myself tomorrow, and get myself on some meds, to help me through this trying time. I can't spend any more days paralyzed by fear, or crying non-stop. I called a friend today (of 11 years, I've only been in this country for 12), and asked him if he could come spend some time with me this evening because I could use the company, and he basically was not willing to change his plans for the evening (with wasn't much) to come hang out with me, and help me out. In the past 3 months, which have been extremely trying, I've figured out who my real friends are, and I've come to realize (not just with this one incident) that he's not really my friend, not when the times get rough anyway. That hurts, because I'd do practically anything to help if he was in my shoes. Oh well, I guess we all learn something about ourselves and about the others around us during times like these, whether we want to or not.

Thanks guys for being here for me, when long standing friends have not.

Preetha
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


PV
Veteran Member


Date Joined May 2006
Total Posts : 1177
   Posted 5/22/2008 5:28 AM (GMT -7)   
My husband got a brain and neck MRI yesterday, and his results indicate that there are no active lesions or inflammation in either area. The neurologist didn't think a spine MRI was necessary. The neurologist did see a small spot on his left brain, which she thinks is either an enlarged vein, or a small scar from some kind of head injury. She also said that that spot was not in a part of the brain that would normally cause a foot drop. She said it was clear of MS-like signs, and to proceed with the next remicade infusion. In the meantime, the infectious disease doctor told us to stop the flagyl, just to be sure it isn't a causative or contributing factor.

We got a little more clarification from the neurologist about the foot drop - I wish doctors would explain things better without so much prodding. She seems to belong to the school of thought of giving the patient little other information other than "it's ok",or "it's not" and this is my recommended course of action. After prodding her, it appears that the peroneal nerve bundle in my husband's left leg is conducting very slow (indicative of some injury, which is made more possible by the rapid weight loss that my husband experienced recently). Also, all his nerves (both his left and right leg) are conduction slightly slower than normal (which may be explainable by poor nutritional status for a bit, and/or the flagyl).

So, my husband is going to get his third infusion today. We're looking forward to this infusion, to help push my husband further towards remission. We're due back next thursday (May 29th) for a follow-up nerve conduction study, to see if his peripheral nerves are improving, now that he's eating better, taking nutritional supplements, and stopped the flagyl. So, yesterday was a good news day for us, and I wanted to share the good news.

Thanks very much for your support. I'll let you know how his next nerve conduction study goes. In the meantime, I'm rooting for remicade to push him through to remission.

Preetha
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


bentwistle
Regular Member


Date Joined Jul 2006
Total Posts : 330
   Posted 5/22/2008 5:16 PM (GMT -7)   
I'm so glad to hear there has finally been some good news amonst all the bad that you've both been through! Hopefully the remicade is not the problem, and your husband will achieve remission. How are you doing by the way? I hope your appointment was also successful and you start to feel better soon too. It is very difficult to be witness to a loved one's downward spiral. Supporting your spouse can be very stressful, and I'm glad you've sought help yourself. I'm sorry your friend dissapointed you so...you've been through so much and to suffer that blow too must have really hurt. Maybe you can reach out to your friend again later when the stress is less and sort it out.

Wishing you and your husband continued good news,

Keep us updated,

Bev
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