Remicade - First bad reaction after 8 months (chills/fever/weak)

Hi everyone,

Not really sure what I am wanting to get out of this. Just wondering if anyone has any info/stories?

Backstory: So I started Remicade a little under a year ago for a fistula and Crohns. I am going every 2 months now. I had no active systems before, but I was iron/vit D deficient and after starting Remicade and taking these vitamins, I am finally back to normal levels.

I take Clartin and Zantac the night before and the morning of every infusion. My first several infusions I had little to no reaction. Maybe a little anxiety, small itch in the back of my throat after.

However, the other day I had another infusion. The day of I was fine. It was a good 24 hours after my infusion at work when I instantly felt weak and cold, and my left hand started getting sensitive and a little numb. I could tell it was escalating quickly so I went straight home. (Around 8:30am)

At home, I covered myself with blankets. After I warmed up, drank a lot of water, and got my breathing back to normal, my hand was no longer numb (maybe this was due to not getting enough oxygen instead of nervous system damage from Remicade?). I took some Tylenol, after 20 mins, I started to break the fever and started sweating. (11:30 am).

By 4/5pm I felt like I could go back to work if need be, just felt a little crummy due to what happened. So it was very short lived. Today, two days after this event, my left hand still feels a little weird (maybe I'm just over thinking this, I tend to psych myself out).

I have told my doctor, and their call is to come in again in 2 months for another infusion and we'll see if these symptoms repeat themselves and play it by ear. I am a little anxious about this, but this being an odd ball out of about 9-10(?) or so infusions, I think I may give it another go.

Thanks for any reply you can give!!!

Hi Rumble09,
I agree on giving it another chance. Here is my experience-
I developed issues with humira after being on it for 9 months(burning pains, stiffness in my legs, muscle pains, tingling sensations, muscle spasms that would wake me up at night, restless leg syndrome). Though the drug was amazing for my crohn's. All of the side effects made me very anxious and nervous because I didn't know what was going on. It also got very hard to function with the stiffness and the sleep disturbances from the spasms so I had to stop it. after several weeks the symptoms subsided.
I am on remicade now and again have had great results for the crohn's but after 5 months my joints are slowly becoming more painful and stiff among other side effects. It's been about two months scone noticing side effects, some have gone away some have gotten worse. Given that all my blood work looks good I'm willing to keep going with it a little longer because who knows if the next medication will be as successful with treating the crohn's and I personally don't want to have any regrets that maybe I stopped it too soon. The best thing you can do is keep a journal of your symptoms and track them. I know when any of these things start happening it makes me anxious too but it helped me having had the experience with humira that most likely my symptoms will go away if I stop the drug so I feel more comfortable giving it longer. Best of luck! I hope it's not the Remicade though!

I'd also give it at least one more chance. My post-infusion symptoms got worse over time and I generally felt crappy the day after an infusion so I always tried to schedule them on Friday so I didn't need to worry about missing work the next day.