In hospital...possible remicade reaction 2 weeks after infusion?

Greetings from the hospital! Was just admitted after a long night in the ER. Began with soreness that turned to terrible shoulder and hip pain, eventually so bad I began blacking out and getting nauseous from the pain.

Once my other shoulder began to seize up, we headed to the ER. Currently on lots of good pain stuff and some steroids, but I can't lift either arm or walk without a lot of difficulty and pain. My jaw locked up as well and I couldn't take oral meds.

Never had this happen before. I restarted Remicade on Dec 22 after 3 year hiatus with no problems, but cant help but wonder if somehow I had a delayed reaction. Nothing else changed. Thoughts?

Sounds like the remicade to me. I had a similar but different reaction that I believe came from remicade a couple of years ago. I only had 3 infusions (that was all I was prescribed). about 9 weeks after my last one I started to have horrible pain in my joints during the night. I would wake up and my knee, or shoulder, etc. would be seized up in pain. I noticed you used the word seized too and that is part of what caught my attention. I could not roll over in bed. I would have to sit myself up and turn my body and plop down. It was the worse pain imaginable and was on both sides of my body. It felt like I was battling demons every night. If I needed to use the bathroom at night I would feel like I was going to pass out. When I got up in the morning I could not lift my arm enough to even comb my hair. Everything was difficult. I could not take a bath as I could not get in and out of the tub. It affected just about every joint in my body, my fingers, and my jaw. I would go to bed at 8:00 because it was just too difficult to do anything but lay in bed. I also ran a low fever for several months. I went to a rheumatologist but never got a definitive diagnosis. I felt like my immune system was attacking my body. I had a really high sed rate at the time: 90. The rheumatologist thought the high sed rate was from the UC but I was not flaring at the time.

I am interested if you get a diagnosis. Also, is your pain worse at night? Sorry I don't really have any answers, just questions. I did a lot of internet searching when I was going through this and never really got any answers. I hope you do. It took several months for me to recover and my shoulders and knees still bother me sometimes.

Oh wow! I haven't been on Remi, but it sounds as though it's possible, especially if they've done some testing and nothing else fits.

I hope the meds kick in and you feel better quickly.

q

Mkl11-

I had a very similar experience to Beeswax, only my pain started shortly after my very first infusion. I had been in the hospital for 16 days with a severe UC flare and was in rough shape. I was hoping to take three infusions of Remicade to buy me time to regain strength and heal up a bit for surgery (which I had decided I wanted to pursue instead of a lifetime of Remicade). Remicade was amazing in that it ended my flare in 5 days, and I was able to leave the hospital. However, I started to experience pain, first in my hips, the morning of the day of my discharge. The docs did an x-ray but found nothing. They said the pain was just from being in a hospital bed which seemed reasonable to me. However, once I got home, the pain just got worse and worse in the following days. Like Beeswax, mine came on most strongly at night. It migrated to different joints on different days and was the most excruciating thing I ever felt. I could not function and it would make my cry in pain and roll around on the floor trying to find some position of comfort... which there was none. Even my pain meds did nothing. It was horrible!!! My husband and I would say that every night the boogeyman was coming to get me. Usually around 8 a.m. it would resolve a little bit, only to come on again the next night. My doctors could never tell me for sure it was from the Remicade, but they said it could be. I had UC for 10 years at that point and had never had sore joints before. I had also been on Prednisone before (and still was at that point and didn't taper off of it until well after surgery) and had never experienced joint pain with it either. Remicade was the new thing in my equation and had a strong feeling that was the culprit of my pain. I had a blood test to make sure I hadn't gotten drug induced lupus from the Remicade, but fortunately that came back negative. Regardless, my future infusions were cancelled and I went into surgery a little earlier than expected. However, at least I was stronger and out of the flare. For me, the pain lasted badly for about a month after the infusion. Then it started to slowly go away until it was completely gone at 8 weeks once the Remicade left my system. I have no residual pain from it... but again, I stopped the Remicade after one infusion which may have helped in that regard.

I hope you find something that works for you.

So sorry to hear that. Your news is very discouraging.

I had my first Remi infusion two weeks ago and go in for my second tomorrow. However, I started w horrendous pains in my knees that shoot down my calves. I am lying in bed (while my family is at the movies) because the pain is excruciating.

On top of it all the only relief I got from the Remi was no more
blood! Still mucus! Still urgency.

Hope u feel better and I don't end up in the hospital! :)

I know... it is hard to figure out what is causing what. However, I was skeptical about the UC or Prednisone causes since I had never had any joint pain before... and then to have it suddenly start 5 days after my infusion? Seemed like too much of a coincidence. I felt like my suspicions were confirmed when it gradually disappeared once the Remicade left my system. If you do even a cursory search on the internet, you will find many posts from many different individuals talking about joint pain and Remicade.

It is also interesting that you are starting back on Remicade after being off it for a while. My doctor told me that Remicade would have to be a lifetime gig for me because if I ever stopped taking it, my body would likely build up antibodies to it and then if I tried taking it again my body would have a reaction. That is what I liked about surgery... I didn't like the thought of being on such a strong drug for the rest of my life.

As far as the delayed reaction part... even the FDA website on Remicade says this:

Some patients treated with REMICADE have had delayed allergic reactions. The delayed reactions occurred 3 to 12 days after receiving treatment with REMICADE. Tell your doctor right away if you have any of these signs of delayed allergic reaction to REMICADE:
•
fever
•
rash
•
headache
•
sore throat
•
muscle or joint pain
•
swelling of the face and hands
•
difficulty swallowing

True about the success stories. I have a friend who has been on Remicade for ten years for arthritis and it has been a huge blessing for him. He has no side effects whatsoever. Our bodies all react to things differently. That said, if you are having a very bad reaction, I would pay close attention. It might be your body telling you it doesn't like the drug.

hey girl!! i just left you a message and you just need to hang in there!! you'll be okay, i promise.

You're right, OldHat, this does feel more like a reaction than UC induced inflammation, mainly due to its suddenness and intensity. Regardless, it seems like no more Remicade for me.

So far my orders have come from a rheumatologist here. Both of my GIs were on holiday yesterday and I'll have them contacted today. Right now I see a GI full time in Pittsburgh, but run all decisions through Roberts since I move back there full time in June. Both were fine with restarting Remicade but super interested in what their thoughts are.

Good news, I've regained limited movement and slept for a few hours. Though we just had a code red and are lock down? Never a dull moment. They really don't let you sleep more than an hour at a time anyway.

mkl11, I am glad you are regaining some movement. Even though my painful attacks came later after my remicade infusion then yours, they were also sudden and severe. Mine probably came about the time I should have been getting another infusion if I was still planning on getting them. In fact, I still remember the exact date and day of the week they started, two and a half years later. I had no other symptoms related to UC at the time and seemed to be in remission. I think the remicade messed up the signal in my immune system and rather then attaching my colon my body was attacking my joints. That is the only explanation I could make out of it. I had weaned off of prednisone about a month earlier after being on it for close to 7 months. I was also tested for Lupus, and had lots of tests done and nothing definitive was ever found out. I hope you continue to improve and feel better. I hope your UC symptoms stay away and you find something that works without all the horrible side effects and reactions.

So you're hospitalized in Pittsburgh now? At UPMC? Their big UC honcho is M. Reguiero, I think. You could try asking forum member Jano for advice; she has joint issues & lives in that general area so maybe she would have some tips for you RE local medical care. / Old Hat (31 yrs with left-sided UC; presently in remission taking brandname Colazal)

Just finished 3rd night here and starting 3rd day. Never thought my first UC hospitalization would be for extraintestinal stuff.

Feeling same as yesterday and with a bit more movement on arms. My hope is they get the antibody tests back and send me on my way. All I'm seeing now that I feel a bit better are dollar signs!

Only issue now is no BM since Sunday evening, but I don't go much when I travel so it's not too abnormal.

Thanks for all the replies and a place to vent!

Hi Beeswax! Thanks for checking in.

I've been out for a couple days now. Definitely doing better--I can use my arms and my strength is getting better. Just very weak and tired but today I hope to get out and about.

Yesterday, though, I woke up with severe pain in my ankles and could barely walk all day. It's dissipated a bit today but still sore in my left ankle. I guess whatever is going on is still working its way through my system.

I still have no idea what happened. My GI ordered some tests through the hospital I was in, but I was discharged before the antibody tests came back. So, my GI hasn't seen them and I can't get a hold of them until I fax forms to the hospital through my GI. Of course, I have no fax machine. Ridiculous process. I hope to get it sorted out soon but I've just been too tired to deal with it. I do think it had to do with the Remicade though, but now I can't see my GI until mid-February--so hopefully my GI symptoms stay in check until then. I'm going to try to see a Rhumetologist soon to get another opinion on things, too.

Remicade induced lupus is painful and debilitating. Educate and advocate for yourself. If I had refused my last remicade infusion, I would be 9 weeks closer to recovery. Find a good rheumatologist. I fired my GI who refused to acknowledge that remicade can cause this even after the bloodwork. In fact, he did not inform me of the test results until AFTER my last infusion. At least I was still functioning then. I interviewed new GI's and have chosen one that I think will listen and be part of a team. I have taken 2 weeks (to start) off from work as a teacher. I literally could not make it through a day. Rest appears to be helping along with plaquenil and tramadol although when I have an "episode" NOTHING helps. I feel paralyzed with pain and fear. They say it will resolve in 3 to 6 months. So if you have any doubt, hold off on the remicade until YOU can make an educated decision that is right for YOU. It did put the crohn's into remission.