Remicaid in action

These are all stories from people who have tried Remicaid that I found posted on the net: I had the same reaction when I was on Remicade. I just thought it was the benedryl they gave me before the infusion. I developed Lupus on the drug and had to be taken off. That is when my red and white blood count to a dive to a very dangerous level. The day after I had a bone marrow biopsy I quit taking ALL drugs. At the time I was on, Remicade, Naprosyn, Arava, Prednisone, Darvocet, Nexium, Ambian and Imitrex.

I just had an infusion today. About an hour after I made my post my legs started to hurt really bad 91/2 out of ten pain scale and they are hot to the touch...now it seems to be moving up my back and down my right arm. I'm getting weakness in those areas too. I don't know whether I should call the hospital or not but I took some tylenol and some benedryl and nothing seems to be helping. the pain is making me dizzy and naseated.

Well I ended up going to the emergency room right after I made my post. To say the least I won't be getting anymore infusions. The ER doctor said that he didn't know why my body would react that way but he didn't think it would be a good idea to resume the infusions. I tried explaining what happened to my Rheumatologist today but he blew me off and concluded that I have fibromyalgia (spelling?) and wanted me to continue the Remicade. He said that he thought my reactions were a coincidence and weren't from the medication but from the Fibro. He said he has 100 people on the medication and he has never heard of the reactions I was describing. I told him I wasn't going to do the infusions anymore because it just wasn't worth it for myself. I know for a fact that the migrane, hot and cold flashes, dizziness, being light-headed,blurry vision, weakness in limbs, stiff neck, swollen throat and extreme pain in my muscles in the legs and arm leaving them hot to the touch was all due to the infusion. My first infusion had a few side effects that were mainly just annoying but this time was even worse and quite frankly I don't want to test the third time. I know this drug is amazing for a lot of people. I'm grateful that its out there for those that can benefit. Is anyone on or familiar with Humira?

I need to know if anyone at all has had a side effect of numbness from their remicade. My husband was receiving treatements for Crohn's and now the hand that he was receiving the IV in is injured. He has nerve damage and he was experiencing numbness after his second treatment. I really need to find out if anyone else has experienced this, the doctors can't help us.

Hi Carolyn P - I'll send you an email about my experience with Remicade but loss of feeling and nerve problems are definitely associated with Remicade.


BentFingers posted 05-08-2004 21:49 ET (US)
Hi Srcreaky :-) Just read your posting about remicade. I don't think the side effects get better, just worse - and sometimes with no warning. The day after I had my 7th remicade infusion I work up and couldn't walk. I literally fell back in bed because of the numbness in one leg. In the ER room at the local hospital the numbness continued up my other leg until both legs were numb up to my waist.

The local ER doc didn't know what to do with my so he sent me on to the Cleveland Clinic. Once there, I was admitted by the doc who did my neck and back surgery since there were thinking it was another disc that needed to be fused. He put me on steroids, IV, first thing.

The MRI (total body, with and without contrast) took over 2 hours with just lying still and didn't show anything with the spinal cord. I had more blood work, more doctors and more opinions. They cancelled my back surgery because there was not enough to support doing it.

Six days later, just after the neurologist did a spinal tap which came out negative, it was decided that the remicade's side effect was to blame. That was 2 years ago and I STILL have the numbness in one leg causing me to lose my balance a lot and forcing me to use a cane full time as well as lean on someone when walking.

Yes, I am bitter because I was told only a very small percentage of people have a problem with side effects. Remicade did this to me.

Be careful, VERY careful when using remicade.