UC/Remicade/MS

Annagrace

Regular Member

Joined : Aug 2006

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

Joined : Apr 2006

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

Joined : Aug 2006

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

Joined : May 2005

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:
https://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

Joined : Mar 2006

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

Joined : Dec 2003

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

Joined : Aug 2006

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

Joined : Dec 2003

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^

✚ New Topic ✚ Reply

Forum Information

Currently it is Friday, January 18, 2019 2:42 PM (GMT -7)
There are a total of 3,035,023 posts in 331,786 threads.
View Active Topics

UC/Remicade/MS

Forum Information

Who's Online