Humira/Remicade and MS (Multiple Sclerosis)

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d0choliday
New Member


Date Joined Aug 2008
Total Posts : 2
   Posted 8/19/2008 1:33 PM (GMT -7)   
Hi,
 
I'm new to these forums, but found many of your posts helpful.  My wife has been dealing with Crohn's for 2+ years and has been responsive only to Remicade, but broke out in hives on her 6th infusion.  She recently started Humira as an alternative, but started developing mild tingling on the first dose and more severe tingling and numbing in her limbs on the 2nd.  She has hasn't taken the Humira for 10 days and is still experiencing the tingling.  Her GI has set an appointment with a neurologist for next week to get an MRI and has concerns about the onset of MS (Multiple Sclerosis).  The optimistic view is that the tingling will go away in the next few weeks. 
 
I am wondering if anyone else who has taken Remicade or Humira has had this experience and if it resulted in the onset of MS or if this tingling has gone away?  She is obviously scared and so am I.  Hoping for something positive for a change. 
 
Thanks.
--------------------------------------------------------------
Husband of Crohn's diagnosed on May 2006
Has been on Asacol, Hyoscyamine, Librax, 6MP, Remicade, Humira


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 8/19/2008 1:52 PM (GMT -7)   
Hi Doc and welcome to Healingwell!! I have not used either of those medications, so can't comment on that. But did want to welcome you to one of the best and supportive sites out there.

I bet that must be very scary for your both. Its bad enough to have this DD (darned disease), but to have possibly another autoimmune issue, is just plain awful. Hopefully her docs can get this figured out and get her feeling better. (((HUGS)) to you both.

Gail *Nanners*
Been living with Crohn's Disease for 32 years.  Currently on Asacol, Prilosec 60 mg, Estrace, Prinivil, Diltiazem, Percoset prn for pain and Calcium.  Resections in 2002 and 2005.  Recently diagnosed with Fibromyalgia and doing tests to see if I have Inflammatory Arthritis or AS.


Roni
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Date Joined May 2003
Total Posts : 2480
   Posted 8/19/2008 2:37 PM (GMT -7)   
So sorry about the side effects. some ppl do better on those drugs than others, i cannot take them as i have a mild heart problem and those drugs can cause heart failure too.

Years ago before my heart problem I tried a trial drug similar to remicade and had tingling and other reaction that went away after a few hours. I also had tingling in my fingers the last time I took flagyl. Because I've also shown mild neurological problems, my GI told me not to take remicade or humira or drugs like them again.

It's a very small risk that they can cause MS, but I hope your wife will feel better soon. Take care!

Roni

Sniper
Veteran Member


Date Joined Feb 2004
Total Posts : 6518
   Posted 8/19/2008 2:45 PM (GMT -7)   
Hello and welcome. Sorry you guys are going through this. I have been on remicade about 3 years now. about 6 months ago I experienced some tingling and numbness in my lips and tongue after an infusion. It lasted several days but did go away. I am now pre medicated before an infusion and I also get a second bag of saline while I get the remicade. I have had no more trouble. I hope this all turns out ok for you guys. Let us know. By the way, I cant tell you about feet as I have had nerve damage in mine due to diabetes, but the remicade has not made anything worse.
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.


dietcoke
Regular Member


Date Joined Jul 2008
Total Posts : 186
   Posted 9/24/2008 8:43 AM (GMT -7)   
Hi d0choliday:
I'm wondering what the outcome of the MRI was from your wife. I have been on Humira for about 4 1/2 months and I recently started getting a lot of tingling too, mostly in my hands, but in my back too. My GI mentioned the possiblity of the onset of an MS type condition (that is reversible if you stop the meds) or maybe peripheral neuropathy, neither of which sounds very fun. I have an appt with my PCP on Friday and I'm sure they'll want to do an MRI too. Any update on what's going on with you and wife would be helpful. Thanks, Debbie
39 years old female, Dx'd 2000 Crohn's Colitis in entire colon
Allergic to Asacol/Pentasa/6MP/Immuran and many others (too many to remember)
Past meds: Cipro, Pred
Current meds: Humira (...and waiting for it to work)


d0choliday
New Member


Date Joined Aug 2008
Total Posts : 2
   Posted 9/24/2008 9:00 AM (GMT -7)   
Debbie,
 
I don't have much concrete news.  Since the tingling, my wife stopped Humira in order to "remove it from the equation."  She had an MRI at a neurosurgeon's suggestion and the results showed no lesions or damage to her brain (I'm sure your PCP will suggest this too).  He had no conclusive information to share, but felt that Humira was not DIRECTLY causing the tingling.  While he did not committ to any one cause, he suggested that because Crohn's and MS share some traits and there is much still unknown about the two, there could be some link between the tingling and the Crohn's. 
 
The other potential cause suggested was that the Humira indirectly brought on the tingling in her hands and legs.  We already knew the Humira caused extreme fatigue and soreness, so the theory is that an already tired and stressed person who then took the Humira injection became even more fatigued and this brought on the tingling and headaches.
 
Since the MRI, the tingling has subsided for whatever reasons.  The bottom line for my wife was that the Humira didn't really work well, was expensive, and indirectly caused the tingling.  So, we're probably done with it permanently and at least for now.  She has a checkup with the neurosurgeon in 2 months and if there's no further symptoms including headaches I'd suspect we're done with this episode for now.  As the neurosurgeon said, it's hard to diagnose the causes for much of what he deals with.  I'll keep this post open though and respond if there is an update.
--------------------------------------------------------------
Husband of Crohn's diagnosed on May 2006
Has been on Asacol, Hyoscyamine, Librax, 6MP, Remicade, Humira


dietcoke
Regular Member


Date Joined Jul 2008
Total Posts : 186
   Posted 9/24/2008 9:06 AM (GMT -7)   
Thanks for your reply! I am petrified to have an MRI, but know I will have to. Also, the Humira is somewhat working for me, when basically nothing else does, so I am very hesitant to give it up, but will obviously have to if need be. Glad the MRI came out ok, that must have been great news for both of you!
Debbie
39 years old female, Dx'd 2000 Crohn's Colitis in entire colon
Allergic to Asacol/Pentasa/6MP/Immuran and many others (too many to remember)
Past meds: Cipro, Pred
Current meds: Humira (...and waiting for it to work)


MikeB
Veteran Member


Date Joined Mar 2006
Total Posts : 1169
   Posted 9/24/2008 9:08 AM (GMT -7)   
Low B-12, common in Crohns, can also cause tingling of that nature in the extremities. Hopefully she was checked for that as well.

sandcastler
New Member


Date Joined Oct 2008
Total Posts : 3
   Posted 10/23/2008 6:02 AM (GMT -7)   
doc holiday.. i just read your message, hopefully everything has been resolved by now.  i was diagnosed with septic colitis in early sept.
of '08. my dr. put me asacol, 2 pills ,3 times a day. after only 2 weeks of taking this drug, i devolped numbness and tingling in my hands, feet and midsection front and back. i asked my dr. if this was one of the side effect from asacol, but he said no. i researched this and found out it is rare side effect, showed him the article and he took me off the drug. my numbness has subsided all except my hands. my dr. has since sent me to a neurologist , who did a mri of my neck. my follow up appt. with him was hard to handle. i started talking about the asacol again, blaming this for the numbness. he stopped me in mid sentence, and told me a lesion was found on the mri.. he said this was linked to ms. i now have another mri of the brain scheduled this week, and a spinal tap next week. i'm still in shock.. i do not take any other drugs.. i have no pain anywhere, and still believe this is a direct result of the asacol. the neuro. told me that if numbness was a side effect from a drug, it would only be in your hands and feet, not torso area. really getting confusing. i hope you read this.... and i hope everything is resolved with your wife..

RubySue
New Member


Date Joined Jul 2008
Total Posts : 5
   Posted 10/28/2008 6:17 PM (GMT -7)   
I have taken four doses of Humira. After the second one, I started getting this tingling in my hands and feet. It wasnt all the time. After the fourth shot, it was all the time. My doc said to stop the Humira until I see a neurologist. The neurologist basically didnt know what to make of it. He examined me, gave me a shocking test (literally -- an EMG- electrodes and shocks- fun, fun, fun), and then gave me a clean bill of health. I've had an episode where it affected my arms and legs and part of my back. Kind of freaked me out. My last Humira dose was almost a month ago. When I see my gastro next week, since the neuro gave me a clean bill of health, have a feeling he'll say to go back on the Humira.

Doc Holliday, I'm wondering did your wife's sympoms totally subside or does she still get any tingling? Thanks.

YesPleaseThankYou
New Member


Date Joined Jan 2009
Total Posts : 1
   Posted 1/10/2009 6:54 PM (GMT -7)   
I have been taking Humira for about five months for Crohn's and AS. It has been working very well. Life changing. Like Remicade was. I'm only 26 and my severe arthritis pain has vanished. I switched to Humira for the convenience of home injections. A few months ago I felt severe numbness in my back and legs (sporadically), then the severity tapered to a mild, but still present. I determined that it only occurred when I put my chin to my chest. MRI showed 3-5mm lesion on my spine, which explains the cause and effect. Just had a brain scan today to 'rule out MS'. Not sure what to do, but that seems to be the case for most people. Wait and see, fingers crossed.

cbk
Regular Member


Date Joined Apr 2007
Total Posts : 134
   Posted 1/15/2009 7:56 PM (GMT -7)   
Hi,
 
Sorry to hear what has happened to your wife. I had the same issue with Remicade..tingling, weakness, and some random facial pain..
 
I did the whole MRI thing and nothing came up, but it was pretty cleare that it was a result of the Remicade as I had taken a break from it after my surgery and then returned to it.
 
The good news is that it goes away, the good news is that there are other drugs. I'm on methotrexate and it works just as well, if not better, than Remicade.
 
So no more anti-TNF biologics for your wife, and I personally am not going to test any more infusion drugs until they are on the market for quite some time.
 
Good luck, she'll be fine.
22 Female, currently on MTX. Previously on Imuran, Remicade, Pentasa, etc. Ileocolic resection in 2006.


cbk
Regular Member


Date Joined Apr 2007
Total Posts : 134
   Posted 1/15/2009 8:00 PM (GMT -7)   
And don't panic about the time it takes to go away, the tingling resolved in about a month and the one sided weakness I had in a few months. If you have any questions let me know
22 Female, currently on MTX. Previously on Imuran, Remicade, Pentasa, etc. Ileocolic resection in 2006.


sandcastler
New Member


Date Joined Oct 2008
Total Posts : 3
   Posted 2/5/2009 12:49 PM (GMT -7)   
hi... this post is for roni...   you mentioned that these drugs cause ms..  i am wondering if this info came from your neurologist.. mine told me that it does not cause ms..  i had all the numbness and tingling too. my neuro. tested me for ms.  i had spinal mri, brain mri, and a spinal tap. i had one lesion on my spine and none on my brain. my spinal tap came back showing the o  bands that come with ms. he then sent me to a ms specialist in detroit and he confirmed that i had ms. i have to start taking copaxone in feb.

sandcastler
New Member


Date Joined Oct 2008
Total Posts : 3
   Posted 2/5/2009 4:21 PM (GMT -7)   
oh.................. and before all this started, i was on asacol, for about 3 weeks.

Julia Hill
Veteran Member


Date Joined Mar 2008
Total Posts : 543
   Posted 2/5/2009 8:52 PM (GMT -7)   
When I was on remicade I to experienced tingling and numbness in my right leg and foot. I went to the neuorologist and he did an EMG twice within one year, and both times I was told I could continue with the remicade. I found that these symptoms disappeared when I stopped taking remicade. My GI was very familiar with these symptoms and immediately pointed at the remicade. A year and a half later I started Humira (April/08) and I have not had any of these symptoms return as of yet.

All the best to you,
Julia

camnky
New Member


Date Joined Mar 2009
Total Posts : 1
   Posted 3/5/2009 9:58 PM (GMT -7)   

Hi everyone,

I have been recently diagnosed with Crohn's Disease within the past year.  Have tried several medications including Prednisone, Flagyl, and Entocort.  My gastro doc has now had me on Humira for about 5 months now.  Even though it has relieved most of my "Crohn's" symptoms, I immediately started getting severe numbness throughout both of my arms.  I had asked my doc about any correlation between the numbness and the Humira and he told me there was no relation and referred me to my primary care doc.  Since then, after talking with several pharmacists from my specialty pharmacy, they have told me that no one has reported these symptoms.  I have now been treated like a guinea pig.  They have done an MRI of my spine, my brain, and an EMG.  I have just today seen a neurologist and he told me he's 90% sure my "MS like" symptoms are directly related from my Humira.  This is the first i've heard of it.  I'm in Shock!!!!!  And confused!!!!  I have another MRI of my cervical spine next week with the contrast dye to check for lesions on my spine!!!!  I can't believe this is the first time i've heard of the relationship between the two!!!!  Any suggestions from anyone?????

Thanks.


Chronicallyill
Regular Member


Date Joined Apr 2008
Total Posts : 195
   Posted 3/5/2009 10:28 PM (GMT -7)   
Hey all.  Well this is very discouraging to me to hear. Really scares me. I am curently waiting to get the money for my prescription for Humira. My G.I. didnt tell me anything to to do with the drug. He jus wanted for me to start something so my crohns would stop flaring as badly. I have tried so many drugs and am at my wits end, but I am not sure I want to try this drug if it causes lesions on your spine and brain and what not. :(  I am very disheartened.
Age:22/6"1'/146lb - Diagnosed: 2001 @ age 15 now 22
First time mom as of March 8th 2008
Past drugs: Pentasa, Flagyl, Budesonide, Prednisone, tons of Antibiotics, Didrocal, 6mp
Past herbal remedies and vitamins:Probiotics, Omega 3&6, Prenatal vitamins, B12, Calcium, iron, vit C, vit D, vit E, Selenium, mineral drops
Current drugs: Valtrex, Methotrexate as of October 2008
Problems:Fissure and Tags on rectum, blood clots, Chronic UTI's, Osteopenia, Ulcers in my decending Colon
No surgeries....yet. Gone through 5 G.I.'s found a 6th G.I. crossing my fingers
Procedures: 4 colonoscopies, 1 upper endoscopy, 2 barium swallows, 1 biopsy of the fissure and tag (chron's affected)


RubySue
New Member


Date Joined Jul 2008
Total Posts : 5
   Posted 3/6/2009 3:24 PM (GMT -7)   
I had 3 doses of Humira before I began experiencing tingling (hands and feet) and numbness (in weird places-- shoulder, ear). My doc sent me to a neurologist who did the the EMG and also one that tested my optic nerve. Both tests were fine, but 6 months after the last Humira dose, I still get these symptoms. My doctor who is usually pretty aggressive must be a little worried because he isnt pushing me to go back on the Humira. We are both torn, because it did help me. I'm waiting to hear from him to see if I should go back to the neurologist. I'm interested in what's happening with the rest of you.

Lisa430
Regular Member


Date Joined May 2007
Total Posts : 148
   Posted 3/6/2009 5:57 PM (GMT -7)   
I have not posted anything here for a long time but took a peek to see if anyone had written in about tingling and numbness with Humira. I just came back from my second visit to the neurologist. I developed the tingling and numbness in my toes and feet at about the same time I started the Humira, more than a year ago. First it was occasionally in my  middle toes, then it spread to more of my toes a few more days a week and it is now up to my knees. An EMG from last February when it started getting worse was normal. The neurologist diagnosed this as a neuropathy and is sending me for some more tests (an MRI was normal so ruled out MS), but thinks it is probably related to the Humira, although he said that the Crohn's itself can cause neuropathy. In addition to the numbness and tingling, I have also gained 50 pounds since I have been on the Humira which is putting stress on my knees and making me miserable because I feel so fat!. The humira has helped but has not turned out to be a panacea. I am usually exhausted, have daily headaches and still have little mini flairs if I eat the wrong thing or get really stressed. I am really struggling with whether to go off the Humira or not.

witty1
New Member


Date Joined Mar 2009
Total Posts : 1
   Posted 3/17/2009 11:05 AM (GMT -7)   
I do not have Crohn's disease, but rather, Rheumatoid Arthritis.  Sorry for barging in on your discussion but I was brought to this page by typing humira and nerve damage in my search engine.  I have been on Humira since August.  I started it the week after my honeymoon.  about 1 1/2 months ago I experienced cramping, tingling and numbness in my feet.  I told my rheumatologist about it and she could only tell me it wasn't my arthritis.  I even asked her if I was crazy because I hadn't felt this way before.  Her reply again was that it wasn't my arthritis.  I followed up with my pcp, who did an array of blood work.  In between the time my blood was drawn and my follow up appointment with him, I took 2 more shots.  By the time I went to see him again, the bottom of my legs were numb and tingling, my hands and forearms were numb and tingling, and I had muscle spasms in my feet and hands.  He asked me did my rheumatologist know what was going on.  I told him what I had said to her and what her response was.  He immediately said he was going to call her at that moment because looking at my medication (Humira, methotrexate), my medicine could be to blame.  On his return to the exam room he stated that my doctor was out of town, but her partner said "Oh yes, we see that a lot," when he told her what was happening to me.  I was floored by this.  Why didn't she say something when I first told her this?  I wouldn't have taken the next two shots.  I now have to go to a neurologist to rule out neuropathy, ms, and just nerve damage.  I am praying this is something temporary as I am already fighting for my ability to function with the rheumatoid arthritis.  I am switching rheumatologists because I am so disappointed and hurt that this was allowed to go on.  I have misseed work because my limbs are so weak.  I am an elementary teacher and sitting down all day is not an option.  I am supposed to be a newlywed, enjoying my husband that it took me 34 years to find.  Instead, I'm left trying to mask how I feel because he is already worried about me.  I'm sorry this is so long, but I had to let it out. How could she not tell me this?  Maybe I should call "Lee Free"...

cumminsjoanne
New Member


Date Joined Mar 2009
Total Posts : 1
   Posted 3/25/2009 2:11 PM (GMT -7)   
Hello my husband has RA and was on Humira for over a year and went into remission so slowly came of the drug but after 6 months had a flare up so went back on Humira but started having tingling sensation and numbness in legs and forearms after two injections. Thought it was a sign of MS and had MRI and given the all clear came off Humira but took 5 months for the numbness and tingling to fully disappear. Is now on cyclosporine but not having any effect RA is flaring up in knee and shoulder. Wondering has anyone gone back on Humira after side-effects and have the side-effects returned. Was previously on Embrel but had no effect.

tainky
New Member


Date Joined May 2009
Total Posts : 4
   Posted 5/31/2009 6:45 AM (GMT -7)   

I have been taking Humira for approximately 4 years and just recently was diagnosed with MS and Lupus. I am curious to know whether anyone else has been diagnosed with this problem. The rheumatologist had no idea that this could be one of the side effects, and I have numbing on my left side which I went to my family doctor for. Thank god she ordered an MRI which suggested MS. I was then referred to a neurologist and after more tests and another MRI (2hours) it was confirmed that I do indeed have MS. Also vitamin D levels are down so I have to take a supplement for that. I had numbing 2 years ago which everyone said was nothing and no tests were ordered, even though I asked for them and told them the family history of MS. They stated that this did NOT run in families and I would be fine. Apparently not. The neurologist said that any TNF blocking agents could cause MS. Why did the rheumatologist not know this? I am seriously upset that the doctors do not listen to patients when they have concerns then try to cover their butts. Anyone with further information would be greatly appreciated. Now I can hardly move because there is nothing else to take for the arthritis and the drug that he wants to put me on is not covered by insurance. Now I have pay for the MS meds and get the third degree by the office staff about being in pain and needing them to do something about it.


MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 5/31/2009 8:43 AM (GMT -7)   
I have the issue with biologics and lupus syndrome. The ms type symptoms were blamed on my rounds with spinal menegitis.

There is something to be said for the autoimmune cascade, meaning that if you get one autioimmune disease you are more likely to get another.
Forum Co-moderator - Crohn's Disease:_All comments have the caveat contact your local health care provider.

I will find a way or make one. –Phillip Sidney 1554-1586

All that I am and all that I shall ever be, I owe to my Angel Mother.

The Bucket List- Have you found joy in your life?  Has your life brought joy to others?

Make sure your suffering has meaning…


tainky
New Member


Date Joined May 2009
Total Posts : 4
   Posted 5/31/2009 1:07 PM (GMT -7)   

so true MMMNAVY.  couldnt have said it better myself

wink  

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