So I went in today for my third Remicade infusion, my first two were pretty uneventful. Today, about 40 minutes in, I started feeling weird, I got chills but had no fever, my heart rate went up into the high 130s( my B/P did remain stable) and felt very anxious and light headed. They stopped the infusion and gave me solumedrol. They started it back up and it happened again. All in all it took from 10:30am till 4:00pm to run this medicine in. They did increase my dose today. Doc said he had not seen that particular reaction but that it didn't mean it wasn't related to the medication. I have had panic attacks in the past but have not had one for about 6 months. This wasn't quite as bad as a panic attack but it was pretty dang scary. They sat with me for about an hour after i got my infusion to see if I felt better, and I did, slightly, but now I have those chills again. No fever, but my skin just feels creepy crawly with goosebumps.
They said they would call me Monday to talk about whether or not I should have another infusion of Remicade. I think they may have tested me to see if I am making antibodies but not sure.
Have any of you had a reaction like this? Thanks for listening :)
Oh Mimi I am so sorry. No matter what it was it was a drag! I would bet it was a panic attack but I sure don't know for sure. I hope you are feeling better. I am sending you warm prayers and gentle hugs. I hope they will try you on Remicade again and that you don't react again.
Sorry to hear about your bad experience. How are you feeling now,any better?? Were you anxious about anything?? I am on remicade & have not had anything like this happen. It does sound more like a panic attack. Do they give you benadryl before the infusion? I always get a benadryl & two tylenol before my infusion is even started.
Please keep us updated how this all turns out for you. Sending HUGS your way. Hope you are feeling better soon.
I'm sorry it went so poorly. I just wanted to throw out an alternate idea to a panic attack. Could it have been a low blood sugar reaction? Maybe not. I just wanted to throw an idea in. I hope it goes smoother next time.
I had an anaphylactic reaction to Remicade on the 3rd infusion. It was immediate upon the start of the infusion though. I'm sorry you had a bad reaction, it is really scary :(
That sounds really scary. How are you feeling now? I have never had that treatment but know my body tends to react different to things than other people. It sounds like a reaction to me but hard to say of course. Go with your gut. Even a slight reaction could have triggered you to have a panic attack. I know they're terrible...I get them too at times. I hope the next time goes better.
Mimi- I just remembered something that has happened to me in the past I am not sure if it will help you or not. Sometimes when the inflammation is high I get a runny nose (clear like allergies), a cough and my ears pop. I usually get shivers and chills too. Sometimes if I jerk my head I get a head rush. The sensation has caused a panic attack reaction in me I think as I am afraid I will fall or maybe pass out. Or maybe I just panic. Could this be happening to you? Just a thought, I hope it helps.
The post infusion flare could be a result of the solumedrol. If you have had it with each infusion, and had a flare a few days later there might be a connection. I am no longer allowing the solumedrol. I have had such horrible pain after receiving it that one or two days of relief doesn’t make it worth it.
I am sorry that you had such a rough time with your infusion. It could have been related to stress and anxiety or a side effect. As long as you were able to recover from that episode, I don’t think the doc will have a problem continuing the remicade. It might be a good idea to take a driver next time if you don’t already do that.
I haven’t had any reactions to remicade, but I have had my fair share of debilitating anxiety. It raises my heart rate, blood pressure, respiratory rate, and makes me incredibly dizzy. This is the most common reaction for me, but I have learned that the body can respond to stress in strange ways. I don’t know if you take any as needed medication for anxiety, but if you have some it might be a good idea to try it before your infusions. If nothing else, it will help you get a nice nap while you wait!
Mimi,
Instead of taking the Benadryl, you could take a non-drowsy one like Claritin. That’s what they give at my infusion center. It’s much better than the Benadryl hang-over.
Oh Mimi i am so sorry. They really dropped the ball and you should be pissed. Try to point it out to them as nicely as you can, they will be more likely to hear you if you can. If you can't blast 'em good! I am so glad your primary was more receptive and that you are getting proper treatment. Maybe it wasn't anxiety but illness coming on? Either way I hope you are feeling better soon. I ma sending you warm hugs and prayers.
Hi...I think i was 3 months into Remicade, every 6 weeks..They kept icnreasing it...I think we all start out at 300mg?
I was on it 2 yrs, up to max for me, 900mg
well after 3 months into it....the nurse from across the room, saw my face turn scarlet, kept runnig over...And they stopped it, called a doctor.
I also told my husband, i don't feel like talking, put my head down, i guess i was light headed
so i had a reaction..From then on, they gave me IV pre-drip, solumedrol.....and i got some psoriasis on my back, itched, always before Remicade, few weeks before....Instead of doing benadryl before, orally...instead of claritin...I asked for benadryl in the IV..helped the psoriasis too
Off of it now, they thought i got drug-induced lupus from it...but it's regular lupus too, I was always positive for lupus, but didnt have symptoms...but i had joint pain as a symptom..Remicade did cure up my pustular psoriasis, Enbrel didnt
MimiB please don’t give up. Get yourself well from this virus or whatever you have and go and talk to your doctor. There has to be a protocol you can take that makes you feel better. I am wishing you the best. Terri. Aka rebelmom
Oh Mimi I am so sorry. It is a lousy time of year to feel bad too. And your Rheumy's office sure isn't doing you any favors. I am so sorry. On the bright side I would guess since the antibiotic is doing nothing chances are you have a virus. I know that probably doesn't make you feel a whole lot better but it is less dangerous. I hope you feel better soon and can give the Rheumy's office a piece of your mind!
I'm sorry you had this happen mimiB. I had bad reactions to remicade and had to stop. I think your dr. should have gotten back to you, your symptoms are classic for infusion reaction (the chills, severe headache, not sure about the fever). Ugh.
Mimi,
It sounds like you had a "perfect storm"of things not going well all at the same time. It sounds to me that you were already getting sick when you got the infusion. You mentioned something about already having sniffles the same day as the infusion, so it is likely that this was already brewing. Then, you had symptoms of either a reaction or an anxiety attack, and on top of everything, your Rheumatologists office did not follow through on anything they said they would. I don’t understand why they didn’t exhibit more concern for you. Even with the problems that I have had with my doctor, they have always been very concerned if I am sick and have a doctor on call for after hours patient problems. Your doctor was supposed to follow up with you on Monday, instead you had to track them down. They did not follow up on your other calls either. What jerks! You have every right to be angry, but, just as everyone else has said, it won’t get you anywhere to let it out on them. If you do, they will remember and it will affect your relationship negatively even if you are in the right.
Please don’t give up on the medications. You know how hard it is to get stared on a treatment plan, getting the doc to decide what they want to do, getting insurance approval, getting the appointments set up, pre-treatment labs, and on and on. It is so hard to start over. Even though it is difficult, have some faith that the remicade will work. There are protocols set up so that some people who have reactions to meds can still get them (as long as its not a life threatening reaction), and we aren’t even positive yet that it was a reaction. Also, it takes a while for the remicade to work. I saw NO improvement at all until my 4th infusion. Granted, it’s still not where I would like to be, but I have seen a marked improvement since my last infusion. My husband has noticed it too, so i know that its not all in my head! I still have a lot of pain and it’s all in the same places that I had it before. The best way to describe it is less intense. I have a lot more function than I did before. I still get worn out when I am too ambitious, but I made dinner TWICE this week with no help, and have been able to reduce the amount of ibuprofen and Vicodin that I was taking. I have nit been able to cook for the whole fandamily for months. Like you, I was ready to give up after the 3rd infusion. I was so frustrated and was convinced that I was polluting my body, paying through the nose and hurting for no reason. If I had let myself just say screw it, I wouldn’t be feeling like I do now. Of course I want to get even better, but if this is as good as it gets I’ll take it!
I hope you will continue to try and simply chalk this up to an isolated crappy experience.
I width you the very best of luck and support you no matter what you decide is best for you!
Losts of (((hugs))) and happyu thoughts are heading your way.
I want you to know that I've been thinking of you and wishing the best in going forward with any treatment you choose. I feel terrible you had to go through such a horrible day.
