Remicade Allergic reaction!

[Crohnaroideramasis]

Definitely an allergic reaction, everyone. It didn't happen right away after my second infusion, but a few days into it my hands and feet swelled up bright red and the incredible itching started. Also, my tongue swelled up. Went to the emergency room and they put me on an iv of steroids, Benadryl other antihistimines. After four hours of an iv I was sent home with prescriptions and I'm fending off the allergic reaction. Not sure what this means in terms of continuing the infusions. The reaction next time could be worse, so I was told by the doctor in the ER. Remicade really helped me in combination with the steroids about % 30 of my pain is gone over all. This is such an improvement I'd hate to go back to life without Remicade. I see my doc soon about the reaction and we'll take it from there. I hear you can pre- treat before infusions to avoid allergic reaction. I was given Benadryl before my first two infusion and obviously that no longer works. On to the next thing. I'm just going to keep trying until I get better!

 

[moogie]

That,s really to bad.

It happens sometimes. Keep us posted on what your doctor says. Good luck

 

[SubPir8]

My 12 year old daughter had a severe reaction on her 5th infusion. It was very scary to me, and I can only imagine how scary it is when it is your own body, and not being as close to medical help. It was about half a minute after they started the drip rate. Very scary, her face immediately turned a greyish color and began swelling. She was unable to breath and her IV arm turned bright red. I thought, "Well, that is the end of Remicade.....for today at least". Thankfully her stabilization was extremely rapid after being administered benadryl and steroids.
I go back an forth on the extent of research I do with regards to the disease, sometimes it overwhelms me and i stop researching for a week or so. That was where i was, so I hadn't really researched what to do if a reaction occurred during the infusion. When the doctor said that we were going to "try it again at a lower rate", I was in sever disbelief. After several phone calls and surfing the net on my phone for half an hour, my wife and I decided that the risk of another reaction was mitigated by being admited to the hospital and having emergency services available, and that we wouldn't give up on Remicade yet.
She was initially set up for a 3 hour rate at 83.3g/hr, so they restarted at 10/hr, and recording vital signs every 10 min. After half an hour, we went to 20. After another sucessful half hour, went to 40 and the next hour returned to 83.3 with no issues.
The ER doctor is probably correct in that it COULD be a worse reaction next time, but I would give more weight to what my GI doctor said over the ER doctor.
In our case, our GI told us that we would pre-treat with benadryl and steroids (as of right now, my daughter isn't taking steroids on a regular basis) and keep a very low rate.
Best wishes to you and your family. Keep faith and hang in there.
-SubPir8


Daughter diagnosed with CD May 2011 after extensive hospital stay for unknown reasons.
6MP didn't work
Remicade has been flawless until end of JAN

 

[sickofcrohns]

I have allergic reactions to Remicade even with Benadryl, so I am always given corticosteroids before every Remicade treatment. I've been on it 8.5 years and Remicade still works. The downside is steroid withdrawal after every treatment. (I go on Thurs. afternoons so that by Monday, I can work again).

Good luck.

 

[SubPir8]

The Steroid pre-treatment has seemed to work ever since. We had a rough bout from Febuary through about June, and ended up taking oral steroids daily. It seemed like the Remicade wasn't working and she would be feeling really poor around 4 weeks after infusion, our GI was having discussions with us about possible surgery if her condition didn't improve. Then all of a sudden - poof!
She has been going back to 6 weeks symptom free between infusions. We didn't change ANYTHING and it just seemed to go back the way it was when we first started her on it - the miracle drug. Weened off the oral Steroids through June and here we are!
The whole time we were thinking that Remicade was at the end of its line with us. Our GI kept insisting we stay with it. Thank goodness he was correct, and we listened, because my wife and I were beginning to doubt him.
Infusion time again on Wednesday next week, school starts again the week after that!

@ sickofcrohns,
On your steroid withdrawal, is it joint pain or other symptoms as well?

 

[Sugar]

I also reacted to Remicade but my treatment was stopped due to it. The infusions went well for the first few then my body started fighting it out. I battled the itchy skin, flu-like symptoms, severe migraines and heavy chest. The last infusion was stopped as I started to get faint and was ready to pass out and the itchiness started almost immediately.
Now on Humira and I have been able to handle it with no severe reactions. I'm getting the same relief minus the allergic reactions.

 

[sickofcrohns]

@ sickofcrohns,
On your steroid withdrawal, is it joint pain or other symptoms as well?

Glad to hear things are working out so far.

OK, just to be clear, I have joint pain but I don't know if it is from the Remicade or helped by the Remicade, because it does get worse the week or so after Remicade, but before I was treated for Crohn's (with steroids), I had severe joint pain that interfered with my ability to walk. 3 years ago when I tried to get off steroids completely, I also had serious hip pain that again interfered with walking, so I went back on the prednisone. So, yeah, there is joint pain, but it seems to be more tied to a lack of steroids for me than to exposure to Remicade.

As for the kind of allergic reaction I get to Remicade, it is hives, itchy eyes, itchy throat, itchy everything, basically, and wheezing. If I get corticosteroids as a pre-med, I don't get these symptoms.

Recovery from the solucortef (hydrocortisone) I get before Remicade takes place in two phases. The day of treatment, and for about 24 hours afterwards, I get manic: cheerful, generous, hyper, unable to concentrate, chatty, oversharing, etc. It is dangerous for me to ride a bike or drive or be trusted with money during this time. When the steroid starts to wear off, I get spaced out, tired, lethargic and chilly. (This is the ideal time to curl up and watch stupid movies because I'm good for little else). This phase lasts about 2-3 days. Usually by 4 days after treatment I can go back to work.

Good luck! I hope things work out for you.

 

[rambo2413]

I've had U.C. for 25 years. The last line of defense before surgery was Humira and Remicade. Humira did not work. I had 6 remicade infusions with no trouble. The seventh
got a sore elbow nd a sore finger 3 days after the infusion. Off to U.C.S.F. doctor for advise. He prescribed 100 mg of steroids before the infusion. I got the infusion yesterday
with no problems yet. Remicade has been wonderful. I have been in remission for over a year. I hope I can stay on it.

 

[Essieluv]

I had five Remicade infusions. After each one, I had reaction. At first it was very minor and thought it was just from being tired or anxious. Then it got worse, even when the drip was slowed down. On my last infusion, I had extreme tachycardia symptoms and couldn't finish the treatment. My doctor said to stop, no way was I to try it again. He was pretty sure that if I did try Remicade one more time, I would get severe anaphylaxis.

I know that the benefits of Remicade are nice, but it can be dangerous to continue taking it if you had a reaction.

 

[Mzjenny]

I also had a bad reaction. I'm scheduled dec 2 for my 3rd infusion so what my GI is going to do is pre meds, stop the infusion half way more meds then post meds. They also slowed down the drip rate.
So I hope this helps because the remi is helping me. Good luck!

 

[ronroush7]

Have any of you had folliculitis as a result of the Remicade? I know this is nit related but is it possible to see blood in your bm and not on the paper?

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