UC/Remicade/MS

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Annagrace
Regular Member


Date Joined Aug 2006
Total Posts : 20
   Posted 10/15/2007 9:31 AM (GMT -7)   
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 
Annagrace
 
Diagnosed Aug, 2004. Pancolitis
multivitamin
calcium 600 mg, magnesium 250 mg, fish oil 2 x 600 mg
Remicade Infusion


dakotagirl
Veteran Member


Date Joined Apr 2006
Total Posts : 3402
   Posted 10/15/2007 7:30 PM (GMT -7)   
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 :)
Pan-colitis and GERD diagnosed May 2003
 
Asacol 12 per day,  Azathioprine 75mg, Rowasa and Canasa as needed
Aciphex, Effexor XR, BCP, Rhinocort nasal spray
Culturelle, Biotin, Folic Acid, Forvia, Calcium, and B12
 
Osteopenia (hip and spine) from prednisone use.  Started Azathioprine because I was steroid dependent.
 
Co-Mod for the UC forum
Keep HealingWell running smoothly:  www.healingwell.com/donate


Annagrace
Regular Member


Date Joined Aug 2006
Total Posts : 20
   Posted 10/16/2007 6:41 PM (GMT -7)   
Thanks Dakotagirl, I'll try and take your advice. It's not easy though.
Annagrace
 
Diagnosed Aug, 2004. Pancolitis
multivitamin
calcium 600 mg, magnesium 250 mg, fish oil 2 x 600 mg
Remicade Infusion


FitzyK23
Veteran Member


Date Joined May 2005
Total Posts : 4219
   Posted 10/16/2007 8:38 PM (GMT -7)   
Hi! Just wanted to know we just discussed this on the crohns board.  Read here:
http://www.healingwell.com/community/default.aspx?f=17&m=937546
25 Year old married female.  Diagnosed w/ CD 2 years ago, IBS for over 10 years before that, which was probably the CD.
 
I started getting a ton of junkmail after putting my myspace profile link on here.  Im taking it off but if you want to contact me just email me and Ill give you a link to my myspace.  Sorry!


AKB
Veteran Member


Date Joined Mar 2006
Total Posts : 992
   Posted 10/17/2007 12:09 AM (GMT -7)   
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.
Dx:

Left-sided UC, Jun 2005. Flex-sig only... clear for first 20cms, then inflamed through next 30cms.

Therapies:

Pharmaceutical: Pentasa 3G/day, hydrocort 1x every 7 days
Probiotics: Acidophilus Pearls, Primadophilus Bifidus
Naturals: Caprylic Acid, Methylated B-12, Vit ACDE, Zinc (w/copper), Selenium, Turmeric, Bromelain, Luteolin
Killer Foods: Soda, Fried Food (especially french fries!), Beer, Red Wine, Pepperoncinis


bunnypucker
Regular Member


Date Joined Dec 2003
Total Posts : 494
   Posted 10/17/2007 6:41 AM (GMT -7)   

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


Crohn's Disease Diagnosed 12/24/03 (Thats Right, Merry Christmas to me!)
Bipolar
Probable MS
 
Im 26 years old, and am currently only taking remicade, protonix and evil prednisone for my CD. am on quite the cocktail for my BP however: Geodon, Lamictal, Celexa, Buspar and Klonopin.
Im also on lipitor for high cholesterol caused by a prior BD med. and i take some meds prn for my allergies, asthma, and migrianes.
 
"We are all worms but I do believe i am a Gloworm"
^always makes me smile^
 
 
 


Annagrace
Regular Member


Date Joined Aug 2006
Total Posts : 20
   Posted 10/17/2007 7:00 PM (GMT -7)   
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
Annagrace
 
Diagnosed Aug, 2004. Pancolitis
multivitamin
calcium 600 mg, magnesium 250 mg, fish oil 2 x 600 mg
Remicade Infusion


bunnypucker
Regular Member


Date Joined Dec 2003
Total Posts : 494
   Posted 10/18/2007 4:05 PM (GMT -7)   
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
Crohn's Disease Diagnosed 12/24/03 (Thats Right, Merry Christmas to me!)
Bipolar
Probable MS
 
Im 26 years old, and am currently only taking remicade, protonix and evil prednisone for my CD. am on quite the cocktail for my BP however: Geodon, Lamictal, Celexa, Buspar and Klonopin.
Im also on lipitor for high cholesterol caused by a prior BD med. and i take some meds prn for my allergies, asthma, and migrianes.
 
"We are all worms but I do believe i am a Gloworm"
^always makes me smile^
 
 
 

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