Humira/Remicade and MS (Multiple Sclerosis)

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.

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

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

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

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..

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.

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

oh.................. and before all this started, i was on asacol, for about 3 weeks.

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.

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.

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"...

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.

so true MMMNAVY.  couldnt have said it better myself