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Delayed allergic reaction to Remicade?

Hi everyone:

I'm hoping for some input/wisdom from those who have experience with Remicade.

I got my first Remicade infusion on Sept. 21 and am scheduled for my next one on Tuesday.

Yesterday morning, I woke up and couldn't get out of bed. It felt like both my ankles were sprained, and that someone had hit me with a baseball bat on my wrists, shoulders, and knees. While I have had joint pain for years, this was something else altogether. And the pain felt like it was in the joints, but the pain extends to muscular pain as well as pain in the connective tissues.

After a few hours, the intensity of the pain subsided, and all seemed reasonably okay. Then, at about 5 in the afternoon, I started getting the same intensity of pain back in my knees, but also in my upper thighs/pelvis area, and along my jaw/mouth. My mouth felt like I had a series of abscesses and once again, I couldn't get out of bed or move around from the pain in my legs. My temperature hovered around 38.7/101.6.

I decided to take Benadryl at around 7:30 and fell asleep. Around 3 am when I woke up, the intensity again had gone down, but the pain is still persistent although, now it is bearable and I have some mobility.

Has anyone else experienced this? The only thing my brain can think of is that this might be a delayed reaction to Remicade. But what I do know for sure is that there are a lot of people on this site with a lot more knowledge, wisdom and experience than me...
 

Crohn's 35

Inactive Account
Yes!!! Me, by my 3rd infusion I was was getting severe pain in my arms, called a neighbour and another to help get my coat on and get me to ER...turns out I was allergic and they gave me demoral, when I got home it was wearing off and OMG I couldnt move my arms!!!!! I called the security where my husband works and they got him on the next plane. I was by myself and 3dogs! I couldnt get out of bed, I dropped the phone and prayed someone would come and help me. 2 Percocets (had to wait til my husband got home) every 4 hours and the doctor was angry and said no, every 6 hours and I said I cant even wipe my butt!!!! It lasted 3 days, and then it went into my foot and felt like I broke it and massive swelling and bruising. I had only one crutch so my husband went and bought me new crutches cause I couldnt walk and my arms were just comeing around. The said I was allergic to the mouse protein in the Remicade and went into my lymph nodes... Ya think??? God I was in so much pain. Never got another shot and was so leary of Humira, but it was a Human protein and it worked for a couple of months and then weekly and then peterd out! Cimzia isnt here, missed the boat and both my docs think it wouldnt have worked.

Not trying to scare you, but I wouldnt take your next shot. Too risky. But ultimately it is your choice. Let us know how you get on. :hang:
 
Oh, Pen, how horrible. And yes, your experience sounds a lot like mine...trying to 'rush' to the bathroom when you feel like you have two sprained ankles is quite a feat! My dog was both a bit worried and intrigued to see me crawling on all fours and then wiggling like a worm to get to the bathroom. And yes, yes, yes, wiping my butt required some miracle/divine intervention. My experience with Humira mirrors yours, too...worked for a little while, then began to sputter...tried weekly shots, more puttering. What did work for me was Ustekinumab, but I had it only as a drug trial, and so I can't have access to it. It's so frustrating knowing that there's a drug out there that could or may work and we can't have access to it. I, too, am hoping at some point, Cimzia travels to Canada!

Thanks especially for your caution around my next shot. I'm calling my GI tomorrow morning to tell him about what's happenin', and if I don't get any alternative reasonable assurance, I'm taking your advice and quitting the Remicade!
 

vonfunk

Bourbon Bandito
Location
Toronto,
I had serum sickness two weeks after my first infusion. Every major joint in my body seized up and I couldn't move under my own power. They gave me dilaudid in the hospital, the initial intense pain only last a couple of days. i was in the hospital for a week while they ran tests. It's over a month later and I am still having problems with my hips.

So my doctor let me try another infusion. I went into anaphylactic shock, the benadryl and steroids didn't help. And for the next week or so I would have random joint pain, mostly my jaw for some reason.
 

Crohn's 35

Inactive Account
Vofunk :eek: thanks for reminding me I forgot the pain went up into my jaw... it has been 2 years so I forget most of it (blocked it out cause it scared the crap out of me! Pretty scary stuff if you become allergic to it. :eek2:
 

vonfunk

Bourbon Bandito
Location
Toronto,
The only consistent thing between both reactions that I had was my jaw. The second time it started hurting during the allergic reaction while I was getting the infusion.
 
The pain in the jaw is something! When it first came on yesterday, I didn't immediately link the mouth/jaw pain to the other pains. I just thought, "oh no, now I have a major abscess in my mouth and I'll have to go see the dentist." I couldn't open my mouth more than half an inch...just enough to put the straw in my mouth to drink Ensure.

Vonfunk, that was quite the ordeal you went through. I see that you are no longer on Remicade...makes a lot of sense!

Pen, I can well believe that this is a pain you wanted to forget!

The other thing that seemed to come up in some of my research on these symptoms is that if the infusion is administered too rapidly, there's a greater chance of an allergic reaction. The infusion should take three hours...my dosage was administered in just under 2.5 hours. It's something I'll be bringing up with my GI tomorrow.
 

vonfunk

Bourbon Bandito
Location
Toronto,
As far as the infusion lengths go it varies. The bigger you are, the longer it will take because the more they need to give you. I was told that the total time is about 3 hours, 2 for the infusion and 1 for them to monitor you. My first one took about 3 hours, and I am not a small guy, I'm on the tubby side. Currently I weigh about 225lbs.
 

Crohn's 35

Inactive Account
Mine never took that long.. 2 hours because we watched a DVD and we were done before it was over. I dont think it has to do with the speed of it. Not everyone can tolerate all drugs. I really wished the biologics worked one needle bi weekly (humira) was so much better than pills.. I also couldnt tolerate Methotrexate.. but then again My Gi says I was the only one in hour hospital who had all the biologics and Metho twice and imuran and 6pm. All I have reactions too. Stupid disease...and my body won't co operate either.:thumbdown:
 
Just wanted to report back on my conversation with my GI. He didn't think that my symptoms had anything to do with Remicade. He didn't think this was 'delayed allergic reaction,' nor did he think it was 'serum sickness.' He did say that the first infusion especially should be given at a slower pace given Remicade is a foreign substance, but again, the speed of the infusion should not make a difference 12 days later...the reaction to the speed of the infusion would have shown up during the infusion.

Now I'm not sure what to do. My infusion is scheduled for this afternoon, and if my GI is saying that my symptoms are unrelated to Remicade, then do I defy him and not go for any more infusions? And if I don't go, then what? I have no options, and I might now seriously piss off the one doctor who has actually been (up until this moment) really a good advocate and doctor for me.

Anyways, I just wanted to say how much I have appreciated both your feedback, Pen and Vonfunk. Your shared experiences were really helpful for me over the weekend.

Cheers!
 
I had Delay hyper sensitivity to remicade, and it was just as described. I seriously felt like i was run over with a mack truck and every bone had been broke in my body. It usually set in 2 days after infusion. I had been taking Remicade with out problems for probably 6 treatments. Then I had an infusion reaction. after that is when it all started with the terrible pain. In order to drink i had to use a straw as I could not open my mouth teeth/ and had to just wiggle straw in. Not fun.. Be careful if you do get the infusion. I ended up getting 2 additional infusions as one Dr said it was a reaction and other disagreed. But happened both time after that and they BOTH deemed my to having Delayed Hyper sensitivity. I did go on to have Humira which worked fine until I had my surgery. Though i not have Lupus (9 months) and am still holding hope that it is just Drug induced from the Humira.

I got bright red, hot and flushed when I had the infusion reaction. So let them know if you feel different at all during the infusion.
Good Luck,
Brindle
 

Crohn's 35

Inactive Account
Hey Glum, you must be at a loss what to do! I am not going to say my opinions because I think you know my thoughts. Just know that everyone is different and no matter what your doctor thinks, I hope your infusion goes well, what ever your decision is. Let us know what you end up doing and how it turns out. Good luck!!!!
 
"Run over with a mack truck" is such a great description! On Saturday night, I was trying to suck Ensure back with a straw, and even *that* was a challenge!

Pen, thanks for your advice---I sooo appreciate it! By Sunday, I was 99% sure that I was not going to go in for my next infusion. But with my doctor's response, and trying to think through the potential medical repercussions, I'm not sure. Short context: at the end of 1995, I was diagnosed with Hodgkin's Lymphoma. This was about six months after my youngest sister died of Crohn's related illness (her immune system was really suppressed and she was dreadfully underweight...she got a virus, and it attacked her organs and she just didn't have enough of an immune system to fight the virus). I ignored all medical advice and decided against doing chemotherapy and the repercussion was that no oncologist wanted to deal with me if I didn't follow their advice. The last oncologist told me that without chemo, he wouldn't give me more than a year. And here I am. My lymphoma is in remission, but it was quite an ordeal at the time for not listening to the doctors. I don't have the youthfulness and strength to deal with it all again.

I've got about three hours to make up my mind...my partner, unfortunately is in Berlin and we haven't had a chance to talk about this! I wish the dog was more of a chatterer...so I'm glad that I've been able to get some head-clearing through all of you!

Thanks for helping me maintain my sanity! Despite what my doctor says, I'm going with your three's experience and know that my symptoms are most definitely Remicade related.
 
So I decided to give Remicade another chance, and went in for my second infusion. I had taken two Benadryl's before I left home because I didn't trust my doctor's response. And sure enough, 30 minutes into the infusion, I started experiencing chest tightening/pain, shortness of breath, dizziness, and my blood pressure shot through the roof. They immediately took the Remicade line out and pumped in benadryl and steroids. I needed oxygen and things calmed down after that, but yes, I'm done. Thanks but no thanks to any Remicade offers.

This again leaves me with no options, but that's okay. The choice between no options and Remicade...I'll take the no options!

Thanks again, everyone!
 
Well at least it was definitive! Not much fun at the time I'm sure, but you can move on knowing you gave it every chance.
 

vonfunk

Bourbon Bandito
Location
Toronto,
For me the worst part was being barely conscious because of the Benadryl. That made everything 10 times worse, I had nausea and I was vomiting, and both are terrible experiences when you are only half there.
 
Just after they gave me the Benadryl, and when my chest pains and breathing came back a bit even, I absolutely HAD to go to the bathroom. The bathroom is quite the distance away, and I was feeling dizzy and threw up on my way there, but I didn't have a change of clothes, and there was NO WAY I was going to soil myself. I have very little recollection of how I got there, but I did get there without humiliating myself any further. And I kept struggling to keep myself awake in case some other reaction happened and I needed to let the nurses know.

Yeah, not fun, but as you say, Beth, it's a good definitive experience!

Now, if only I had the guts to say to my doctor, "Told you so!" like the 10 year old in me wants to!
 

vonfunk

Bourbon Bandito
Location
Toronto,
Well glum chump it looks like our experience was exactly the same. I managed to hold my own until the need to go to the washroom subsided. No change of clothes either, and when I said I was going to throw up I was given this tiny little container, like the ones that they usually use to hold the blood sample when they take blood. It got everywhere, we cleaned me up the best I could, when I left it was mostly dry, so put on my jacket kept to closed and hailed a cab. Spent two days popping Benadryl.
 
I am so thankful for this forum because I am at the point of not knowing what to do. My experience is slightly different from the previous comments I read. About 12 years ago(shortly after Remicade was available to treat Crohns) I had one infusion. Due to seeing no improvement, my Dr. stopped treatment. I then took Imuran for many years without difficulty, went into remission and did what many of us do....I stopped taking my meds when I was feeling good. For nearly ten years I remained symptom free/drug free.
The onset of symptoms with the current flare occurred two years ago and forced me to accept having to remain on medication. Remicade was the first course of action recommended by my gastroenterologist. After the second infusion, I had an antigen/antibody reaction as described in the previous comments. I nearly died. The doctor switched me to Humira and I reacted to it as well but not as severely. I remained on prednisone and placed back on Imuran. Then the real problem began. Several weeks ago, I began having severe joint pain, muscle fatigue and throbbing/burning sensations that migrated from one area of my body to another. Lab work with genetic markers were positive for both Crohns and RA. I went to a rheumatologist who basically asked,"You've taken every drug to treat these two conditions, had difficulty with them so what exactly do you expect me to do?" I said 'nothing', left and began searching for a new doctor. This weekend, my hands were so swollen, they looked like baseball gloves. The pain from my shoulders to fingertips, so excruciating I could barely stand it. My husband had to bathe me, dress me; I became virtually an invalid in a few short days. Both hands and wrists were (and still are) swollen with purple/reddish blotching on the fleshy parts and the joints are white-hardly any capillary refill. I developed painful ulcers on the sides of my tongue and down my throat and can barely swallow. This morning my hands are normal enough for me to type but my knees are red, swollen and painful, right calf and ankle are burning and aching making walking difficult. I saw my doctor yesterday and she is sending me to a pain management center. I do need to address the pain but have no intention of living on narcotics. I just want to be able to function and have some quality of life.
No one knows why this is happening, what is causing it or what to do for it. I personally believe that after being on biologics then discontinuing them, my immune system is so confused it doesn't know what to do. I realize Remicade, Humira and other biologics have been miraculous for many people but for me, it's the opposite. My husband is making inquiries at a few of the best medical facilities in my state in order to get a diagnosis and proper treatment. I am simply wanting to know if any one has experienced anything similar to this and what they did about it. Three years ago, I was a fifty two year old mother of two sons who gardened, swam forty laps a day and ran a business. Today I need help brushing my own teeth. I don't want to sound like a sissy because I am anything but one. I only want my life back.
 
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