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Humira and Demyelinating disease or MS

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Crohn's Disease
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Posted 9/14/2013 10:11 PM (GMT 0)
I have been on Humira for 5 years now with GREAT results. But now I have a small problem.

Over a year ago I got a episode that was so strange I almost fainted in a elevator at the hospital and the nurse bought me up and I was sent down to the ER with uncontrollable shaking. After this episode I have had 3 numb spots on my body all on the right side. On my face, my forearm and my thigh. I had a MRI of the brain and neck with normal results at the time.

Fast forward to today and I still have the numbness so I met my neurologist on Friday and he is going to order a new MRI of the brain and spine.

The other symptoms I have now are:

x Extreme fatigue
x Memory problems
x Dizziness
x Having problems with speech forming words and finding the right words
x I feel like my walking has slowed down a lot
x I randomly drop things I have a tight grip on
x I am very clumsy

Could this be Humira side affect ?
Posted 9/14/2013 11:45 PM (GMT 0)
Yes. It is good your neurologist has ordered another MRI. All the anti-TNFs carry black box warning of the possibility of developing MS while taking them.

Should your MRI be clear - and I hope it is! - your doctor should also investigate the possibility you have developed DILE [drug-induced lupus erythematosus]. Some of your symptoms are also common in lupus. Generally though there is some degree of joint pain with DILE though I suppose some might not develop it. The good news is that DILE goes away once the medication is stopped.

Please keep us updated on what you learn if you are comfortable sharing!
Posted 9/15/2013 12:31 AM (GMT 0)
Thanks Ides I am not sure when I will get the MRI but the doctor sent me for a blood test on Friday and I get the results on Wednesday.

I always have joint pain I just thought that it was not relevant since I have had that for as long as I had crohn's .

My GI was very worried that I had lupus a few years ago since I had some other scary stuff happen in 2008 but it came out as not likely.
Posted 9/15/2013 12:44 AM (GMT 0)
If they did not run an ANA and anti-dsDNA titer blood tests, they should. It is very common for those on anti-TNFs to develop anti-dsDNA antibodies. Most time they don't cause problems but when they do - it is DILE.

Have you been having low grade fevers or mouth sores? Sun sensitivity? [Off topic - is it really sunny in Iceland in the summer? I apologize for my lack of knowledge about your country.]
Posted 9/15/2013 1:45 AM (GMT 0)
Oh, I am so sorry to hear you are suffering from these symptoms. My husband was for a while being investigated for ms as well because he lost hearing suddenly in one ear, and also felt slightly dizzy. He did not have any other symptoms and his MRI was clear. They diagnosed him with a viral inner ear infection, and over the next 6 weeks his hearing slowly improved. It never got back to normal - he is stuck with tinnitus, but otherwise his hearing is ok.

Since then, he's been fine - hopefully, it is something like this going on with you. I'm keeping my fingers crossed for you and hoping it is not ms or lupus. But I am also hoping you'll get answers.

(((Hugs)))
PV
Posted 9/15/2013 8:36 AM (GMT 0)

Ides said...
If they did not run an ANA and anti-dsDNA titer blood tests, they should. It is very common for those on anti-TNFs to develop anti-dsDNA antibodies. Most time they don't cause problems but when they do - it is DILE.

Have you been having low grade fevers or mouth sores? Sun sensitivity? [Off topic - is it really sunny in Iceland in the summer? I apologize for my lack of knowledge about your country.]

I do have a positive ANA but not sure if the anti-dsDNA has been tested. mouth sores is something I am familiar with.

The sun shines all summer long here in Iceland its sunrise at 3 am and it sets at midnight so only 3 hours off no sun :) But I have not noticed any sensitivity towards it because we had a super rainy summer the worst in over 50 years :S

I have to talk to my doctor about all of this its getting a bit confusing telling everything apart. Maybe the symptoms are all related somehow
Posted 9/15/2013 11:14 PM (GMT 0)
I do think all your symptoms are related. I hope your MRI comes out clear. Please let us know.
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