Hi Guys,
I had my first Remicade infusion on 9/7 and on 9/13 had a pretty severe reaction. Throughout the day on the 13th I had stomach pain, back pain, fever, flu like symptoms. By the time I got to the hospital that evening, every inch of my body was hurting me and then everything went downhill. At some point in the ER, I became tachycardic, my blood pressure bottomed out & I stopped breathing. I spent the next 10 days in the hospital, 6 of them in ICU. The Docs can find no other reason than a severe Remicade reaction to explain this but all seem baffled because there was no infection, no sepsis. Anyway, I'm just trying to find others that have suffered a similar reaction. Thanks for your time!!
Kelli, I am so sorry. I have had some mild discomfort, and the runs, but nothing you have described. I am so sorry, but I guess you're done with Remicade. Gosh, that is unusual from what I have read, but that was a heavy duty reaction.
Take care, and maybe you can brain storm with the RD.
Sorry...shel
Yikes!! Glad you were at the ER when all that happened. I have never taken Remicade, I was justinterested to see what kind of reaction you had. Guess you'll be trying something new now. When did all this happen and what will be the next step?Oh goodness!!! ((((hugs)))) I am so glad that you are ok now!!! Geeeze how scary!!!
No, I have not had a reaction like that to the remicade but as with all meds that anyone takes, allergic reactions as severe as yours can happen and I would be willing to bet that is what happened. Sigh. My remicade reaction is pretty much run of the mill fatigue, headache, and loss of appetite.
Didi they give you anything to help prevent a reaction? When I go for my infusions (a whole whopping 2 of them so far) they give me Claritin and Tylenol to help prevent reactions. They also keep me on my high dose of mtx to help prevent reactions.
Have you asked them since you have had such a severe reaction if you can go on to Rituxin or Orencia? < =text/>_popupControl();
I have never heard of such a terrilbe reaction, and odd that it took so long after your infusion to strike. I've been on Remicade for over a year and the only thing I notice is when I'm due for my next infusion.I've been on Remicade for over a year and to date no serious reactions. I do know that on one of the other RA forums someone was hospitalized and if I remember right it had to do with cardiac/pulmonary problems associated with Remicade. These are the only two I've read about.
I understand there can be serious complications but so far, so good.
Kelli, I know it's not much consolation now but I hope that you're feeling better and are back to pre Remicade status.
What meds are you taking now? Are you back to normal?
Lindy
I also had a severe reaction to remicade.I started it when it first came out ,was on it for almost 3 yrs then had to go off it for a year due to insurance problems. I felt like a normal person,no pain, complete remission.Then went to enbrel for a yr.did nothing for me.So by then insurance decides to pay for remicade again.Went for my first infusion and had a severe reaction,blood pressure shot up,throwing up,heavy chest,short of breath,I thought I was dying,scared the crap out of me.Nurses were there with mega dose of steroids an benedryl.So reactions do happen.Im greatful there was medical help there.Hope you are feeling better.Are you trying anything else biologic wise?It took me awhile to get over my fear and try another one.(also had infusion reaction to orencia)I am now on humira once a week,took a long time for it to work for me but finally relief........
Bump!I totally agree with Ninilchicken, I was also on Remicade for about a year and didn't really have any problems with the medication itself. I work at a md office and would be able to get my infusions there (could still help out and work; didn't cost 0.00 to go to the Rheumy!)we always had an epi-pen in case of a reaction but I haven't heard of having one almost a week later! That's terrible. I am so sorry to hear about that. Was your Rheumy able to give you an answer to what happened? Any labs or tests?
After about a year and a half it worked for me. I didn't qualify for the patient assistance program with Enbrel but I did for Humira. They pay 100% of the costs. It works well too. 2 shots a month isn't bad. Plus the only trouble is I (and everyone around me....
Hopefully you'll be able to find something that works for you. I've been dx for about 4 years and have tried many different meds but the biologics really seem to work for me. Good Luck and please keep us informed on how things are going!
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