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Crohn's Disease Forum » Your Story » Remicade - What's it good for?


07-09-2015, 11:00 PM   #1
CCCrohns10+
 
Join Date: Jul 2015
Location: Quincy, Missouri
Remicade - What's it good for?

I am now 46 years old and have had Crohn's for over 10 years. Until age 40 it was a roller coaster ride of drugs. Then came Humira... it was not pleasant to have the injections but they worked. Well at least for about 8 months. Then the itching began. Then came the swelling of the injection site - so large my and barely coved the hot red area. I was forced to wear stretchy pants to go over the site/bump. I could feel the heat from it thru the material. I was then switched to Remicade... what a blessing. I just started a new job and this medicine was WONDERFUL ... immediately felt relief. Now, almost 4 years later I fear the allergic reactions are beginning. I itch every where. Its strange though - I mostly itch behind my knees, the sides of my thighs, and belly. Each area gets red and bumpy.

At first I thought this was all due to sun poisoning - which I started having issues with about 7 years ago. Now I just constantly itch. Ugh.

I get the maximum dose I can get for my weight every 8 weeks.

Other issues I have seen are painful joints, overly tired, and sometimes - at random times - I find it difficult to swallow. None of which I know for sure are caused by the meds.

Has anyone else had similar issues? At times I fear I am just "crazy"... that this is something I am causing myself.
07-10-2015, 12:04 AM   #2
AJC - Australia
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I think it comes down to how bad the side effect is.
I get some side effects, but they only last three or four days, so it is worth it.
Does the itch last weeks and weeks?
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diagnosed 1994 aged 18. 3 surgeries. Remicade is my drug.

I believe this could cure crohns disease.

-Dr John Hermon -Taylor is trying to cure Crohn's disease.
07-10-2015, 06:51 AM   #3
CCCrohns10+
 
Join Date: Jul 2015
Location: Quincy, Missouri
The itching - is constant for the most part - Thankfully during the day or basically when I'm completely covered in clothing the itching isn't too bad. But at night when I change to shorts and t-shirt or when I get dressed for bed - it rages!

I take both an Rx allergy med and a Benadryl at night. If I don't take them I will be covered in hives within 48 hours.

Currently I am fine with "dealing with" the issues... I just fear the side effects will just get worse. Remicade is the only drug I have found that lets me eat ANYTHING I want... for years I survived on little to no fiber and no fresh fruits or veggies.

Thank you for your reply.
07-10-2015, 08:30 AM   #4
Clash
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You may ask your GI to run an antibodies test just to make sure your body hasn't built up antibodies to the med and it's causing the hives and itching. Since it can cause a more severe reaction if there are antibodies it is definitely something I would discuss with your GI
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Clash
Mom to
C age 19
dx March 2012 CD

CURRENT MEDS: MTX injections, Stelara


Dx May 2014: JSpA
8/2014 ileocecectomy
9/2017 G tube

PAST MEDS: remicade, oral mtx, humira
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