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Severe reaction to Remicade

Sierrasryder

Sierrasryder

Hi Everyone,

Until two years ago, I was on Remicade for four years and did great. Just started back on it two weeks ago, again without any problems with the infusion. Friday all hell broke loose! About 20 minutes into the infusion, I started feeling like I couldn't take a good breath and in another minute or so I couldn't hardly breath at all. I rang for my nurse who came in immediately, took one look at me and told me to try to relax and that she would be right back. Well in a second there were three other nurses in my room disconnecting the Remicade and putting Benedryl and Solumedrol into the IV. In the meantime my nurse had called my dr and he said to take me directly to the ER - that I may be having a heart attack!!!:eek2: I ended up spending 10 hrs in the ER. They did a ECG, chest X-ray, and took 5 vials of blood. Results showed I wasn't having a heart attack (thank goodness) and that apparently it was the Remicade. About five minutes after getting the Benedryl and steroid, I was able to breathe better, but my whole body was shaking like crazy and continued doing that for another hour or more.

Later on that evening the dr decided to try the Rem again, but very slowly and everything went just fine. I have never been so scared in all my life when I just couldn't get a breath! Awful feeling. Everyone at the clinic did a wonderful job of taking care of me and I'm so grateful. I really want to be able to take this med as it's the only med in 40 years that has helped me. The ER dr suggested in my orders that my med be given very slowly in conjunction with Benedryl and Solumedrol. I'm a little nervous about trying it again, but I'm going to do it. I'm sure they'll be watching me like a hawk. The nurses said it was the worst reaction they had ever seen.

Do you folks think I'm crazy to try again? :ybatty: Like I said, I had never had a problem with it before.

Thanks, Linda
 
J

Jeff D.

I had a similar reaction. I started feeling as if there was a pressure on my chest then all of a sudden I just couldn't seem to get enough air into my lungs. I started getting pale and turning blue. They took me off the remicade and gave me infusions of benedryl and I left about an hour later. They wanted to take me to the ER but I told them didn't have the money to go so they let me go home. A few weeks later I was put on Cimzia in conjunction with 6mp and I've been fine ever since.

I switched. They said the antibodies I built up from being off of Remicade for so long would have getting repeat reactions so it's better that I just switched.


Best of luck and I'm sorry you had to go through that. I know how it feels and it's a horrible feeling unable to breathe and getting put on the breathing apparatus is not the best thing in the world either. Good luck my friend
 
My Butt Hurts

My Butt Hurts

Squeals-a-lot!
I'm surprised that they wanted to finish up your infusion. I guess if it was really slow and you were able to finish it, maybe it would work next time too. Do you also premedicate with Benadryl or no?
Why did you go off of it 2 years ago?
I second Shantel's suggestion of testing for antibodies.
Good luck - keep us posted on what you decide/how it goes for you.
 
K

katiesue1506

I'd agree with everyone here... ask for the antibody test (though its a bit expensive)

I was put on Remi a second time like you and I had a breathing/heart rate attacky thing like you everytime i would have my infusion. It seemed to always happen around 20 minutes into the infusion right as the Remi would hit my veins. They thought it was an adverse reaction to Benedryl but I swear it was the Remi. When I had them it would feel like I was really excited in my chest all of a sudden and then I'd start breathing fast and I'd get hot. Then my head would feel like it wanted to explode. It felt what I can only imagine a panic attack feels like. They would stop my infusions and run them slower and I'd be fine the rest of the way, but my doc says I've got too many Remi antibodies.

My doc (new) also told me that whenever you take someone off of the Remi and put them back on, they develop at least 40% antibodies to the drug.
 
Sierrasryder

Sierrasryder

You guys are great! Let's see if I can answer some of your questions.

I got off Rem two years ago because I kept getting these red spots all over my legs - looked awful. I then started Humira, but didn't have any luck with it - was on it a year. The stricture that Rem kept open got very narrow and last summer I had to have that area removed.

I started getting joint pain about three years after being on Remicade, so I'm not sure whether the med caused the pain or not. I've been really uncomfortable with joint/muscle pain for the past few years and within hours of getting infused with Rem, it was almost gone. It came back about three days before I was due the Rem (two weeks ago).

The reason the ER dr gave me the rest of the Rem was to see if going in real slow with benedryl and steroid still in me would work. And I was in the best place to try in case I got into some trouble. Also, that little bag hanging behind me was worth $8,600!!!!!

I've never had the antibody test but will ask my dr about it. Sounds like I need to have that information!! I sure hope we can come up with something because as I said, it worked so good for me and after 40 yrs of nothing else doing the trick, I hate to have to give it up.

I'll keep you all posted on what we decide. Again, thank you so much for all your help and support.

Hugs, Linda
 
CrohnieCarolyn

CrohnieCarolyn

Hey Sierrasryder, I am going off Remi after being on it for over a year now. It was doing wonders for the Crohns but I started developing terrible joint pain -especially in my feet and knees and elbows - red, swollen and so painful! Now, in the past few months this has abated but I am now getting these knots that are red and swollen on my forearm and legs...very strange - they are switching me to Cimzia on October 9th and I am so afraid of a flare up and all the problems coming back with the crohns. I guess we have to keep on trying these dangerous drugs because I know I can't function AT ALL without either Remi or one of them - so disappointing to develop these awful side effects after thinking I was going to be okay after a year without ANY side effects - good luck and keep us posted!
 
Sierrasryder

Sierrasryder

Hey, Shantel, I married that "bad boy" 41 yrs ago and am still married to him!! LOL!! :ylol2:

CC, I'm so sorry you're having joint problems too. So painful. I have to wonder if that pain is worse than the cramping from the Crohn's. I so hope you do well with Cimzia. My very best to you ...

Hugs, Linda
 
Sierrasryder

Sierrasryder

Latest Update!

I just talked with my GI dr's office and he said NO MORE Remicade :( They're going to be calling me back to let me know what is next. Apparently, I wasn't supposed to get the remainder of the Rem in the ER. Dr's orders said to discontinue it. They seemed a little upset that the ER dr gave me the remainder of the med.

I'll keep you all posted ..........

Hugs, Linda
 
crohnsproof

crohnsproof

The 2nd year Remicade came out, my dr set me up for infusions. At that time, I had two infusions. That was supposed to be good for a year. The next year I got my infusion and 8 days later I had a delayed reaction. I went into anaphylactic shock. My BP dropped to 30/40, I developed hives as big as golf balls all over my body. The ER failed to recognize my symptoms, but when I got the hives, they gave me the Benedryl. Spent 1 week in the hospital. I have been advised by my Dr and Mayo Clinic to NOT EVER take Remicade again! The results could be fatal for me. I had built up the antibodies to the drug, common when not given more frequently. That's why the infusions are now administered more frequently. Dr said that wouldn't have happened had I not come completely off for 1 year. But, like I said, that wasn't the normal then. Remicade is manufactured using a mouse protein, which a lot of people are not compatible with. Humira is made with a human base protein, which makes it more compatible. When I took the Remicade there were no worries about long term effects. Now all TNF's are getting FDA warnings.
Must say prior to my last resection, I tried Humira for a month, but I had too many adhesion problems for it to be a good choice. So, surgery it was. Before getting the Humira though, I was given a test to see if I was allergic to it @ Mayo Clinic.
It's hard to try to make decisions when we feel so bad. We just want it fixed and fixed now.
 
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Sierrasryder

Sierrasryder

Thank you for this information. I was thinking of trying to persuade my dr to let me try it again but with Benedryl and Solumedrol first, but you changed my mind. Better to just try something else I guess. That episode of not being able to breathe was horribly scarey. Don't want it to happen again.
 
Sierrasryder

Sierrasryder

Shantel, are you getting really good results from Remicade? I would have never gotten off it, but kept getting some kind of red spots all over my legs. They went away after stopping Rem.
 
Sierrasryder

Sierrasryder

I'll keep my fingers crossed for you too :)

I don't know what it is about these skin problems while on this med. People seem to report all kinds of things.
 
Sierrasryder

Sierrasryder

I've been looking for that thread, but haven't found it yet.

I did see that you worked at IBM at one time - so did I! Many years ago here in Huntsville, Alabama. We moved here from New York state when I was 16. My Dad was an IBM'er and I went to work for them straight out of high school.

Small world :)
 
s.a.m.

s.a.m.

Shantel said:
Someone else has a similar thread about having this same reaction - you may have already found it. And I believe another new person has joined recently with it as well. I think they are telling her to take benadryl every day 5 days before the infusion and they are ramping down the speed of her infusion.
Click to expand...
Thats me. I was given Benedryl during my last infusion when I broke out into hives, I continued my infusion as well at a slower rate.
Next time I am supposed to take the Bendryl or something similar for 5 days prior and we are going to give it a go again.
I hope it works, because Remicade has made me feel so much better.
 
C

coreym

I had the same reaction to remicade after being off of it for a year. Even with benedryl I would still get reactions. They would give me albuteral to clear my lungs. Even when given at only the speed of 80 I would still get reactions. Now i'm on humira.
 
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