Remicade and Demyelinating Polyneuropathy

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PV
Veteran Member


Date Joined May 2006
Total Posts : 1177
   Posted 5/14/2008 12:18 PM (GMT -7)   
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
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 5/14/2008 2:23 PM (GMT -7)   
I have one more question - if he needs to get off remicade, and his crohn's is still active, should we evaluate surgery before he gets back to the really bad shape he was in last month?
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


belleenstein
Veteran Member


Date Joined Feb 2007
Total Posts : 1010
   Posted 5/14/2008 7:29 PM (GMT -7)   
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
Belleenstein:

30+ years living with Crohn's.


Shoshanna
Regular Member


Date Joined Feb 2008
Total Posts : 91
   Posted 5/14/2008 9:17 PM (GMT -7)   
PV, if it was me I would give Remicade one more go....but wonder how many infussions has your husband had so far? Also I would have the nerve study done and see what it shows. Peripheral neuropathy is a side effect of Remicade.

The only differnce between Remicade and Humira is that Remicade is made from Rat Murines and Humira is human in nature. I think that is the best way to explain it. Some people do well on Remicade and other do well on Humira. Some can not take Remicade and some can not take Humira. It is like the rest of the meds available for CD some they can give the same outlook.

I wish you and your husband all the best.


PV
Veteran Member


Date Joined May 2006
Total Posts : 1177
   Posted 5/15/2008 5:07 AM (GMT -7)   
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
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 5/15/2008 5:21 AM (GMT -7)   
Oh gosh. It looks like when they say remicade can cause nervous system disorders, they're mainly talking about multiple sclerosis. OMG. I'm in a real panic here.
http://www.remicade-infliximab.com/pages/demyelination..html

It sounds to me like we need to stop the remicade right away before it starts causing any more brain lesions. I am really really scared now. I sure hope the doctor is right and stopping remicade will stop the progression of this demyelination, and somehow the damage over time will reverse itself.

I think it's time to stay away from the biologics for the moment until we get this under control. What other alternatives do we have? He's already on 80 mgs of pred. Should we start 6-mp or Imuran? Other than biologics is that our only choice?

Thanks for your help
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


chroniemomx2
Veteran Member


Date Joined Apr 2005
Total Posts : 2346
   Posted 5/15/2008 5:43 AM (GMT -7)   
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.

MBJOH
Regular Member


Date Joined Mar 2007
Total Posts : 257
   Posted 5/15/2008 6:07 AM (GMT -7)   
PV - I noticed your husband takes Flagyl - my GI did not want me taking Flagyl for very long because it can cause neuropathy. Has anyone discussed that as a possibility?  MB

gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 5/15/2008 6:23 AM (GMT -7)   
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
Veteran Member


Date Joined May 2006
Total Posts : 1177
   Posted 5/15/2008 6:24 AM (GMT -7)   
Sorry, I guess I'm projecting. The neurologist has not done an MRI, so we don't know if he has any brain lesions. He does have something that is causing his foot drop - they did a nerve conduction study of his legs yesterday, and found that the nerves in both his legs were conducting slowly, his left leg more so than the right one. He does not yet have the typical symptoms of MS - like confusion, twitching, etc. But I'd hate to let it get that far - the one thing I do know is that his brain is more important than his colon - which is why I'm freaking out. The other reason I'm freaking out is because his aunt died from multiple sclerosis. I am seriously very very afraid.

The neurologist doesn't think this kind of neuropathy is caused by flagyl - she said that flagyl neuropathy is typically painful, with burning sensations or pins and needles, or crawling sensations, not loss of function without pain. She thinks it is remicade induced - and she says that if it is remicade induced, we should see it get worse with the next infusion. I hate to even bring up the thought that it isn't remicade induced, and that my husband has in short order developed both MS and Crohn's.

I'll be calling his GI's office in the next 10 minutes, trying to get a phone consult with his GI to discuss these findings. I think given the fact that it's his nerves, motor function and brain or his colon - I think we're leaning towards not getting the next dose of remicade at all, and seeing if we can start on imuran or 6-mp, or methotrexate instead. Do you guys concur (it's ok to disagree, I really want honest opinions)?
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 5/15/2008 7:19 AM (GMT -7)   
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.
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.


MBJOH
Regular Member


Date Joined Mar 2007
Total Posts : 257
   Posted 5/15/2008 7:52 AM (GMT -7)   
PV - does he have a back problems? I have a friend whose husband had a nerve pinched in his back that caused a drop foot. Just a thought.

PV
Veteran Member


Date Joined May 2006
Total Posts : 1177
   Posted 5/15/2008 8:49 AM (GMT -7)   
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.
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


chroniemomx2
Veteran Member


Date Joined Apr 2005
Total Posts : 2346
   Posted 5/15/2008 8:54 AM (GMT -7)   
Does he all ready have brain lesions? Because you mention it causing MORE brain lesions.

With him being on 80 mg of pred. I would start imuran, even if you decide to keep taking the remicade. Imuran takes a few months to get into your system, and it needs help getting you into remission (which the pred. should help), but once you get into remission it has an excellent track record of keeping you in remission. After a few months, he could then start to try to wean off of the pred.

Most of the side effects of the remicade are stopped and reversed once you stop the med.

Tough decision, since the cade is helping so much, and the drs. aren't sure it is the cade causing the problems.... You have to decide what you and your husband are comfortable with and go with that. Don't look back afterwards and "what if". You will drive yourself crazy if you do that. Maybe a second opinion will help you in your decision...

PV
Veteran Member


Date Joined May 2006
Total Posts : 1177
   Posted 5/15/2008 9:43 AM (GMT -7)   
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
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


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3459
   Posted 5/16/2008 7:00 AM (GMT -7)   

Hi everyone!

I don't really belong here but Preetha posted on the MS board and I was wanting to see what you all had to say here.  I am so impressed!!!  This is a very active board.  You are all very supportive and informed.  I really don't know a lot about Crohn's except that it too is an autoimmune disease (I had a roommate in the hospital with it).  Now I have a question of my own; in MS once the myelin sheath is damage it does not repair itself.  Is this the same with Remicade caused damage?? After an MS flare there may be a bit of re-myelination but not a lot. 

Well anyway, it was nice to read all your responses to Preetha.  Love and prayer to you all. 


Gretchen       co-moderator MS board       diagnosed with MS July 2006


jpnutritionfirst
Regular Member


Date Joined Apr 2009
Total Posts : 383
   Posted 4/27/2009 4:11 PM (GMT -7)   
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!

PV
Veteran Member


Date Joined May 2006
Total Posts : 1177
   Posted 4/27/2009 4:31 PM (GMT -7)   
Gosh, this post brings back some bad memories! Thankfully we've moved on past there, and without a diagnosis of MS, my husband's foot drop is almost completely reversed. It was caused because he lost so much weight so fast and was malnourished, and injured his peroneal nerve bundle on his left leg. He continues with once every 8 weeks remicade, and it's so far working well for him. Since late December last year, he's also completely off the steroids, also he's able to tolerate a completely normal diet, and his energy is back, and he's slowly putting on all the muscle mass he lost - so lots of progress.

jpnutritionfirst, in my husband's case, without the meds he'd be dead or missing most of his colon. I am very grateful for all the pharma that is available, and all the ongoing research. Based on my personal experience, Crohn's is absolutely nothing to mess around with, and I'd never recommend doing away with all the meds, unless the meds did nothing to help, or you were allergic or something to all of them. We couldn't follow the SCD diet very easily, since my husband is allergic to nuts, and it's really hard to make breads without nut flour. The one thing that we've stuck to nutritionally is for him to stay away from anything sugary - so no desert for my hubby. We noticed that sugar always gives him gas, and we also read that it can breed the bad bacteria in your gut, so he doesn't eat anything sweet anymore.

I'm glad the SCD works for you, but I am convinced my husband would be missing half his colon at least (if not dead) without the remicade. Yes, remicade is a double edged sword with all the possible side effects, but so far, our gamble has been worth it. I'd recommend people give remicade a shot, if they haven't been helped by anything else.
Husband with Crohn's
Diagnosed March 2003 Ulcerative Proctitis
Diagnosed March 2008 Crohn's & C-diff, hospitalized 45 days
Canasa, Lialda, Remicade, VSL#3, Florastor
In Remission since June 2008
Stopped vancomycin for c-diff Jan 1 2009
C-diff free, and in crohn's remission, knock on wood


Rider Fan
Veteran Member


Date Joined May 2008
Total Posts : 1445
   Posted 4/27/2009 9:00 PM (GMT -7)   
Well said PV, thanks for providing context.
32 y/o male. Dx'ed in 1999. No surgeries.

Current meds: Humira 2/27/09. 15mg prednisone. Udo's Choice Probiotics (30 billion). Can't tolerate any iron supplements or infusions.

Tried SCD, didn't work, now avoiding gluten and dairy.


Go Saskatchewan Roughriders!


Keeper
Veteran Member


Date Joined Jun 2008
Total Posts : 1058
   Posted 4/27/2009 10:15 PM (GMT -7)   
The SCD is not a cure-all. My take on how it might work is that it removes the undigested starches from the diet that feed the gut bacteria that provoke the immune reaction. If your gut is not too inflamed, this will reduce the severity of the disease. If the gut is suffering an active inflammatory autoimmune reaction, then there will be fragments of tissue that also trigger the immune cells, even if the bacteria are not present. This provokes more tissue breakdown and more autoimmune damage. It may be possible to take advantage of the improvements given by the Remicade to try dietary control as well. If the breakdown of gut tissue is under control, removing the bacterial food supply in the form of undigested starches might offer relief. I would suggest that you might try it in addition to whatever other therapy you try. Forget about bread. To start with, try only non-starchy vegetables, and possibly soup/clear broth. It might be a shock to alter the diet so radically, but if you can minimize drugs and surgery, you can avoid a lot of side effects. Then, if you have to quit Remicade, possibly dietary control could help. Some people here have run out of drug therapies that they can tolerate, so you are better off if you know what your alternatives might be.

mayqueen
New Member


Date Joined Jun 2009
Total Posts : 1
   Posted 6/21/2009 11:03 AM (GMT -7)   

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.    


Ides
Forum Moderator


Date Joined Nov 2003
Total Posts : 7077
   Posted 6/21/2009 1:07 PM (GMT -7)   
Welcome to Healing Well, MayQueen. I am so sorry about your daughter's situation. How terrible to be incorrectly diagnosed and then suffer such terrible adverse reactions to a medication used to treat the incorrect disease. I developed lupus from Remicade. However, without the Remicade I likely would have had an unnecessary hip replacement. I had severe hip pain attributed to osteoarthritis. Turned out the pain was from inflammation from Ankylosing Spondylitis. Remicade has given many a quality of life that has been outside their grasp for years. Others, like your daughter, have suffered some awful adverse reactions. That is one reason that I always counsel those contemplating starting an anti-TNF to do their homework, and weigh the pros and cons for their individual situation.
Moderator Crohn's Disease  & Osteoarthritis Forums
CD, Ankylosing Spondylitis, lupus, small fiber peripheral neuropathy, avascular necrosis, peripheral artery disease, degenerative disc disease, asthma, severe allergy and a host of other medical problems.
 


idaman
New Member


Date Joined Jan 2010
Total Posts : 6
   Posted 1/10/2010 10:56 AM (GMT -7)   
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?
 

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 1/10/2010 5:15 PM (GMT -7)   
idaman,

I would suggest you start a new post of your own, so that it gets more attention, than getting buried here in a really old post.

Welcome,
Gail*Nanners*
Gail*Nanners* Co-Moderator for Crohns Disease & Anxiety/Panic
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

waitingforacure4cc
New Member


Date Joined Dec 2011
Total Posts : 9
   Posted 10/29/2012 12:45 PM (GMT -7)   
Hi are you still on here PV?  Please contact me at
philippfamily1023@gmail.com. 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
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