01-12-2017, 03:19 AM   #1
Jimena
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Join Date: Oct 2011
Location: Kangasala, Finland

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HUMIRA and MS?

I remember reading that there were people who have Crohns and MS, propably caused by Humira? Can you tell me a little about your symptoms?

I have been using Humira on/off from 2007. Almost 10 years. I have had 3 surgerys and Humira has been of prior and after surgerys of course. I have been using it 40mg every week.

Anyways. I had 2015 reactiuon when my toes and feet were always tingling and i had pretty bad dizziness. I called GI and we stopped Humira for awhile. My crohns just doesn't like being eithout it and my symptoms were gone so we started it again (i have ileistomy). now i have those same symptoms again, plus i have had my face numb on the right side, for about a week, my right hand was numb (pinky and ring finger) for about week, i have terrible dizziness which clearly puts me down on a right side too. Everything happens in a right side. My right eye is feeling weird, blurry and little painful and my eyesight and brain feel like they don't function together. That sound weird but it feels like it!

I called my GI and we did bloodwork, everything was fine, little high bloodsugar, but nothing major really. B12 was good too. No she is referring me to neuro, and did said that is could be humira or it could be MS, but we def should check it out. This is my second round with these symptoms.

Anyone any advise?
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Severe Crohn's since 2002. Tried every longterm medicine there is, Pentasa, Azamun, Remicade, Humira...
Temporary colostomy 2013 -> Parastomal hernia
Surgery, mesh, end colostomy 2014 -> deep wounds that didn't heal, three fistulas around stoma
Colon removal and ileostomy 2015 -> So far so good

And after every stoma surgery, nasty Pyoderma Gangrenosum around my stoma.
01-12-2017, 03:32 AM   #2
Jimena
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I do have other issues too, my head it kind of twitching, i don't think anyone can see it but i feel it and i don't have any balance at all, i don't like to walk in a forest anymore with my dogs, cos i just can't keep my balance there.
01-12-2017, 11:03 AM   #3
eleanor_rigby
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Location: Cheshire, England, United Kingdom

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Hi there is a link between humira and developing MS. It's good you are being referred to neurology. It is my understanding that some of the newer drugs, such as entyvio and stelera do not have the same MS risk, so they may be an option for you.
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History:
2nd Generation affected

Symptoms since 08/2006 (age 17)

Emergency open bowel resection after perforation in 12/2011 (age 22) (wrongly diagnosed as burst appendix ). Three years remission following this unmonitored

Diagnosis:
Perforating small bowel Crohn's Disease 01/2016 (terminal ileum, duodenum)
Coeliac disease (age 26)

Meds:
50mg azathioprine (down from 75mg after my WBC dropped)
Gluten-free diet
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