Remicade and Demyelinating Polyneuropathy

As I mentioned before, my husband's left foot has developed foot drop, so we went to the neurologist today. She did a nerve conduction study, and told us that it's not just his left foot, but that both his legs are showing slow nerve conduction (the left more so than the right). She strongly suspects Remicade to be the cause. She says she has seen patients on remicade have this happen, however, she says the patients she has seen have developed this after being on remicade for years. My husband noticed this (we're not absolutely certain when), but for sure, one week after his first infusion. She thinks there are 3 possibilities (with remicade being the most likely one):
* Remicade causing the neuropathy
* Post Infections Polyneuropathy aka Guillen Barre Syndrome (seems highly unlikely for my husband)
* Critical Care Polyneuropathy (usually seen in ICU patients)

He's due for his third remicade infusion next week (22nd of May). The Remicade seems to really be helping his Crohn's. He now has 2-3 mushy stools, no pain, and is tolerating a low-residue diet. The neurologist suggested the following course of action:
- Get the next remicade infusion
- Do another nerve conduction study to see if things have gotten worse
- If things have gotten worse with his nerves, stop the Remicade. She says in her experience the neuropathy will eventually get better.

She said something about testing him for antibodies (she seemed vague on whether it's antibodies to remicade). Anyway, she's taken some blood for tests, including B-12 (which I'm sure is ok for my husband (he was checked just 2 weeks ago)). Did anyone else experience this with Remicade? Were you able to switch over to Humira without experiencing the same problems? I am wondering if this is side effect of remicade, or if it is because he's developed antibodies to Remicade. Bascially because she's not sure what's causing this, she's suggesting a wait and see approach. Hopefully (though the other causes seem far fetched), this is not Remicade.

Remicade has really helped my husband's Crohn's disease. What do we do about Crohn's if we stop the Remicade? He's still on 80 mgs of prednisone, and we were hoping the remicade will help wean him off that. I was wondering if we should suggest Humira to the GI - however, I know that Humira is also an anti-TNFalpha agent - would it not also have the same side effects for my husband? Should we suggest starting Imuran or 6-MP? Right now, he's not in a bad way - doesn't need surgery, he's starting to put weight back on. If he stops the remicade, what can we do to prevent him from sliding back?

God, I'm so confused, and so upset. Can't one thing go right for us? Please help.

Preetha

Hi Preetha:

Take a deep breath! It will be ok. If he is reacting to Remicade there are other options. But right now, it sounds to me like your best bet is to stay in the moment and not get too wrapped up in next week, next month or next year.

His crohn's is improving. He is so much better than when you were posting a month ago. This is all good. My feeling is that if you can avoid surgery while the disease is active, you should do so at all costs. So I don't think you've exhausted your medical options yet. Sometimes in the midst of a crohn's flare, surgery offers the hope of a quick fix. Just cut it out, so you can be done with it.

But maybe that is the anxiety talking. When you calm yourself and think it through you will be able to see that for a chronic condition like crohn's surgery really is best kept as a last resort. And as well, I'm sure you can appreciate that the best outcomes occur when the patient is as healthy as possible.

It is hard to find the patience to just allow this time for illness and recovery. I always feel so much better when I am doing something to fight this disease, but I have learned also, that sometimes -- often -- I just need to allow and accept, to wait with patience. Experience has shown me that in every crisis, that this too shall pass.

I'm so sorry that your husband is facing the prospect of reacting to Remicade. It is devastating to find a treatment that works only to realize that, even as it heals, it may be hurting.

All you can do is wait for the next infusion and see how things go and take comfort from the fact that the neuropathy, if it is a complication from Remicade, is reversible.

Hugs from the heart

My husband has had 2 infusions of remicade (4/10 and 4/24), and is due for his next infusion on 5/22. This will conclude the induction phase. However, we're not sure whether to continue with the upcoming infusion or not. We're going to call his GI today and give him an update with what the neurologist said, and ask him what we should do. I'd really hate for my husband to lose his mobility because of remicade. While the neurologist said that in her experience the neuropathies _should_ resolve, there are no guarantees (of course, by now I have figured out there are no guarantees about anything in life, period). The question is whether we're willing to risk more damage to his nerves. She didn't just call this peripheral neuropathy, but demyelinating polyneuropathy - where your immune system (if it's remicade related) or something else is attacking the myelin in the nerves. This is just plain scary.

What would you guys do in this situation? Would you go for the third infusion of remicade, and see what happens with the demyelinating polyneuropathy? Would you stop the remicade right away? Are there other meds you would start on right away such as 6-mp or imuran?

This is not a remicade reaction (infusion reaction), and I don't think it's a result of antibodies to remicade - it is simply a side effect. Is it reasonable to think that if he could have this side effect to remicade, he's likely to have the same results with Humira? This is a serious enough side effect that it's hard to say we'll take a chance and see - he's already got foot drop in one leg, who knows what else will go?

Please tell me how you guys would proceed in this situation - we could really use some advice. We're pretty new to the crohn's diagnosis, and we've pretty much done what the doctor's have recommended so far. However, I think at this point, our GI has little experience with this kind of side effect to remicade, and probably doesn't know what next to do as well. You guys probably have more experience than either our GI, and us combined, so some insight on how you would proceed in this situation will help us immensely.

Thanks so much.
Preetha

Does your husband all ready have brain lesions? You said that "it sounds like we need to stop before it starts causing MORE brain lesions." .....

It certainly wouldn't hurt to start the imuran now. It takes a while to get in your system, but he has the pred for now, and then he can start weaning and see how it goes.

Some people have used methotrexate for their crohns, that may be an option.

Hi Preetha How does your husband feel about continuing Rem.? I would certainly run this by your GI . The pred. might hold him until something else can be worked out. I certainly for one would be quite upset to continue under those cercumstances. I would definitely talk this over with the Dr. I did Rem. but don't have expercience with Hum. Perhaps others that have tried Hum. might know. There are lots of people who do good on Imuran. I hope you can get this fixed up or at least get more medical info on it soon. lol gail

PV , it would be important for your husband to recall if he had any of the symptoms before Remicade, even if just a tingling in his toes. I did, but I have diabetes and neuropathy due to it is suspected. I also have had two members of my family with neuropathy in their feet, both all the way up past the knees and neither have diabetes or crohns.

My husband has absolutely no back pain at all. They did try to do the nerve conduction study with his back, but couldn't get good readings. I really don't want to hurry and do the next infusion, especially with the MS possibility. I will take your advice and ask if the neurologist can perform more tests to see what maybe going on.

I'm fairly certain my husband didn't have any symptoms before the Remicade. I asked him, and he says he has never felt anything like this before. Also, he's not diabetic, and his sugar level even with steroids seem to be under control (he tests every morning after he wakes up). The only other thing is the Flagyl.

His GI is out of the office today, so we'll be talking to him tomorrow, and I'm hoping we can get him, the infectious disease doctor (for c-diff, to see if we can stop flagyl), and the neurologist to talk to each other to decide how to proceed. I'll also call the neurologist about conducting a few more tests (such as MRI or spinal tap).

Thank you so much for giving me advice. I hope things get better for my husband and myself. I'm really giving up hope here, and despair fills every recess of my mind. It seems if there is another shoe that can drop, it does. I don't know how you all deal with having all these complications - I just can't get over the fact that my husband was 100% healthy 2.5 months ago. I don't know how to cope with all this - just when I think things are getting better, something else crops up, and so far, that something else has a divergent path from the issue that we were trying to address. It is just unbearable - it makes me wish I didn't have to wake up in the morning - that somehow i go to bed, and never wake up. I know this is the wrong attitude, and it doesn't help my husband any, but I can't help longing for escape somehow - some way to get away from all this.

Hmm, he was taking vancomycin for the c-diff infection, and has shown no signs of MRSA. I will ask the neurologist to check with spine for pinched nerves, and take an MRI or spinal tap to see what other information we can gather. In the meantime, we'll talk to his GI tomorrow, appraise him of what's going on, and other other therapies for the crohn's (not anti-tnfalpha biologics).

I guess there's nothing more we can do at this point. I'm also considering starting on the SCD diet for my husband. I guess at this point, we have to try anything that can help without hurting him. He's already lost so much weight, I hesitate to start him on a diet where keeping your calories up is a problem. Unfortunately for us, he's allergic to nuts, so I can't make him things like almond bread to keep his calorie count up.

This is really distressing, especially so since noone has any answers. I guess we'll know more in months to come. Thanks for all your help everybody. If you have any more suggestions, please keep them coming.

Preetha

I feel compelled to reply to this forum as I am a 4th year medical student has had Crohn's for about a year. Initially it was controlled with asacol but now I'm in borderline remission, currently on vancomycin and tapering prednisone 35mg. I have been on the SCD diet for a month now and I think your husband should definitely try it. I told my GI doc that I was doing significantly better on the diet but she still wants me to do Remicade. I'm taking a chance and refusing the treatment. I've read the SONIC trial studied for patients refractory to prednisone showing that Remicade is superior to azathiprine for remission. There's one problem though . . . the study was funded by the drug company that makes Remicade (which is expected). Does the SCD diet work? I have no idea, but I was on 50 mg prednisone for 2 weeks and it didn't do jack. Only when I started the diet and stuck with it did I get SIGNIFICANT improvement. Other confounders could be that I started vancomycin (which actually made me worse for about 6 days before things improved), boswellia, and pranayama yoga. I'm telling you that following the MD approach inevitably leads to surgery and misery. If you take the allopathic drugs, 70-80% of Crohn's patients require surgery. Take a chance. Take it from me. I've gone through medical school and nobody knows what causes this. MD's are not experts, they are throwing darts here. Take control of your own life and health. Follow the diet, the drugs mask the true cause of the disease and make your worse and worse!

Well said PV, thanks for providing context.

Hello.

I am wondering how your husband is doing or anyone who has had remicade effects. My daughter-40 yrs-was incorrectly diagnosed with espophageal Crohn's 2 years ago and started with remicade infusions. The first infusion was wonderful. During the second she developed hives, but continued after dr consultation. Two weeks later she developed stroke like symptoms---one side sluggish--face,eye,leg arm, hand, unable to balance herself without a walker. She was later diagnosed with brain lesion, an effect of remicade. In the past year she has moved to a 4 prong cane and increased mobility---yet continues to be limited in her activity. I have attended most of her evaluations and the neurologists often refer to one side of her face as " dropped ". Her strength in her arm, hand and leg is minimal. She lost the opportunity to work at her nursing profession and does not yet see much light at the end of the tunnel. Her incorrect dx of Crohn's was changed to a hiatal hernia and severe reflux. She has had the appropriate surgery and very little difficulty with the original symptoms. The effects of remicade continue, however.

Please share your remicade experiences. .....bad or good....we really don't know what to expect. My daughter simply continues to work out at home, attemtping to regain her strength.    

RE:  POLYNEUROPATHY....

 

My condition is not related to diabetes or Crohn's, but likely long-term exposure to chemicals in the printing business for 30 years. (retired 10 yrs ago)

 

The diabilities, pain, burning and numbness are increasing and depressing, but no meds or therapies prescribed have had any effect for years.  Starting to feel like a guinea pig, and can't afford to keep paying copays with no results

 

Since no local docs seem to have any advice about new or current treatments for this condition, any insights or direction are appreciated.  Willing to travel, though we live in N Idaho, and would consider trials.  Also, any experience with acupuncture?

 

Hi are you still on here PV?  Please contact me at

[email protected]. My husband came down with a severe neuropathy and demyelinating diagnosis from remicaide this year and we are looking for answers.  I know your post is from 2008, but if you are on here and can share some insight, we appreciate it.

Hope your hubby is well and recovered.

Thank you,

Tara