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UC/Remicade/MS

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Ulcerative Colitis
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Annagrace
Regular Member
Joined : Aug 2006
Posts : 20
Posted 10/15/2007 8:31 AM (GMT -8)
I have a question for all of you who use Remicade.  I have had about 6 treatments of Remicade and about a month ago my hands and feet started to feel numb (pins and needles). 

My doctor said that some people who take Remicade could develop neurological symtoms for certain diseases, MS being one of them.  I have since read up on this disturbing news and have found out that you don't necessarily have to be on Remicade, you just have to have an IBD disease to be more prone to these conditions.  That is, if you have one chronic inflammatory disease, you're more likely than the general population to develop another.   

Needless to say, I'm a wreck.  I have an appointment next week with a neurologist, but was wondering if anyone has any knowledge or experience with this matter. 

Thanks everyone.

Gracie 

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dakotagirl
Veteran Member
Joined : Apr 2006
Posts : 3402
Posted 10/15/2007 6:30 PM (GMT -8)
Yes, it is unfortunate - one autoimmune condition can increase the probability of having another one. As if we needed more than one thing to be wrong with us!

I know it's hard, but try not to stress until you know what's wrong. Then put that energy into researching what you have.

Let us know what the doc says! Hang in there :)
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Annagrace
Regular Member
Joined : Aug 2006
Posts : 20
Posted 10/16/2007 5:41 PM (GMT -8)
Thanks Dakotagirl, I'll try and take your advice. It's not easy though.
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FitzyK23
Veteran Member
Joined : May 2005
Posts : 4219
Posted 10/16/2007 7:38 PM (GMT -8)
Hi! Just wanted to know we just discussed this on the crohns board.  Read here:
https://www.healingwell.com/community/default.aspx?f=17&m=937546
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AKB
Veteran Member
Joined : Mar 2006
Posts : 992
Posted 10/16/2007 11:09 PM (GMT -8)
i believe remicade has, in rare cases, been associated with demyelinating disease, such as MS.

Also, MS and IBD are unfortunately correlated (having one means you have a higher chance of another). MS is likely a pathogen+genetic weakness, as with IBD. Could there be a common trigger?

As for whether you should worry-- the first symptom of MS onset is usually optic neuritis, not pins and needles. You could have a simple vitamin B deficiency.
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bunnypucker
Regular Member
Joined : Dec 2003
Posts : 494
Posted 10/17/2007 5:41 AM (GMT -8)

im over on the crohn's board and i have a lot of neurological symptoms that my neuro believes that the remecaide may be contributing to. the best thing you can do is to see a neuro and have them keep a close eye on you. you can develop a mock MS syndryome where you have the symptoms but not the actual disease. im discussing with my GI tomorrow whether or not we should continue on the remecaid. we shall see, but dont worry until you find out, it could be other things like vitamin deficiencies as posted above. fitzy did post a link to my thread theres some good info there if youd like to read it.

good luck to you :)

bunny

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Annagrace
Regular Member
Joined : Aug 2006
Posts : 20
Posted 10/17/2007 6:00 PM (GMT -8)
Thanks everyone for the info. What a mess. Bunny, I hope things work out for you. I read your post and it sounds like you're going through some rough times. Sometimes I'm ready to throw in the towel and just have my colon removed. At least I wouldn't have to take those terrible medications that seem to do awful things to the body.

Take care,
Gracie
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bunnypucker
Regular Member
Joined : Dec 2003
Posts : 494
Posted 10/18/2007 3:05 PM (GMT -8)
thanks for the well wishes annagrace. yeah it kinds sucks all these things that we have to go thru. but were hoping the cade helps me out more now that we doubled the dose so my neuro is just gonna keep a good watch on me. i hope things get better for you too!

bunny

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