Remicade - allergic reaction?

I've been taking Remicade for RA and PA for 20 months now. We went with this over Humeria and Enbrel because of the psorisis and a problem diagnosed as microscopic colitis. Basically, the doctor said, colitis symptoms caused by the arthritis.

I have not been taking methotrexate or any other drug with the Remicade until recently when I started Lodine. It made me feel awful and I stopped after 3 weeks of 1/2 dose (due to liver issues I was diagnosed with in December.)

The last 2 times I had the infusion, I got very itchy within 30 minutes of starting the drug. This last time, it was worse and my eye swelled up and got covered in film and hurt like heck. I recalled last time this happened - only more minor. The eye issue happened soon after my infusion ended rather than near the beginning. The nurse insisted that I was on too low of a dose still for the reaction to be the Remicade.

3 days later, my joints hurt so bad that I wanted to jump off a bridge (or fall off since I couldn't possibly jump!) I was utterly useless and couldn't move. I'm better than I was, but I definitely hurt everywhere and it is tough to do much of anything - a far cry from my usual "I FEEL GREAT" after my infusion.  I stopped the Lodine about 5 days after the last infusion as I felt terrible on it. I was supposed to start Plaquinil since I won't take methotrexate...but, I am afraid to start it. I already have hair loss, liver problems, and now immune issues as I can't stay healthy for more than a couple of days. I found a warning also that said, "do not take this medication if you have psorisis" - which I do, though it is (luckily) minor by comparison.  At this point, I have a hard time believing Plaquinil will help me anyway.

Is this an allergic reaction? Has anyone stopped using Remicade if this is the road I need to take? From what I understand, stopping it will bring back the arthritis 10-fold. But, for how long does this usually last? Will it and can it go away back to one's normal pain level? Or will it ruin the joints so bad you'll be worse off either way? Is it definitely going to happen or possibly not? The fact I hurt so bad right now, only 9 days after my infusion, really scares me. I have 2 small children and feel like a rotten parent as it is since I'm unable to do so much with them. I've been dealing with nothing but health issues since my 2nd was born 4 years ago and Remicade has been such a wonder drug up until now. Does anyone have PA and use Remicade with Plaquinil? Do you have any suggestions or insight?

By the way, I opted NOT to call my doctor for 2 reasons, 1 - I see him next week and figured I would have to wait anyway. 2 - No matter how coincidental the situation, he insists people do NOT have allergic reactions to drugs except on very rare occasions.

Thank you.

Thanks, Oreo.

How long have you been taking Plaquinil? It looks like my doctor wrote my Rx for 1 200mg pill 2x a day. Maybe I will try it at 1/2 doses first like I did the Lodine.

The last 2 Remicade shipments have been coming with a cortisone/steriod infusion to give before the Remicade. I think to avoid allergic reactions - which, I believe I fit the timeline for when people start rejecting the drug. However,  I have refused it. I took deltasone (another steroid - pill form - in the same family as prednesone) about 9 years ago. It made me (literally) insane. I shudder at the thought what an infused steriod would do to me.

I will talk to my doctor next week when I see him. It seems most of these doctors just want to give you more medication on top of what you're taking. After awhile, you are taking so many things to counteract the first drug - you never know where your symptoms are coming from.

Hopefully, there are some people out there who have stopped Remicade and can tell me about it as well as plaquinil and if they've experienced any problems.

Thanks again.

Thanks! :)

I don't mind the lecture...sometimes we get so engrossed in our own situations, it's hard to step back. Plus, when you have a husband who is pushing you to stop everything (he doesn't quite get it when it comes to all this) - it makes the worry even louder.

I will question the different drugs and see what the dr says about what happened. He has been pushing a 2ndary drug for some time for the reasons you mentioned below. That is why I caved in on accepting the plaquinil and lodine. The lodine was a bust for me. I refuse methotrexate as I took it for a year and landed in the hospital. I felt rotten on it as well and had breathing issues while on it.

I'm bummed there hasn't been anyone to give comment on the flare up I experienced 3 days after the infusion or the allergies that hit during the actual infusion. Since they don't do infusion centers here anymore and I have to have them done at home, I am unable to talk with other Remicade patients now locally.

Thanks a million for your ear!

I've lost my job due to the auto-immune issues I've been dealing with these last few months. Boss called me today and apologized, but he can't wait for my return.  I understand his position and was expecting the call. I've been home being hit with one problem after another and almost no relief in between. I'm trying so hard to be positive, but as I'm sure anyone with chronic pain will agree, it can be hard some times. To be constantly beaten down every time you try to get up is tiresome and wears on you physically as well as mentally and if I stop and think about it (which I try to avoid doing), I feel like such a failure and just want to cry - it's worse as the pain increases, which I'm sure is common.

Thanks for listening. I AM doing better and it's been nice reading and sharing with others. I'm so glad I came across this website.  It helps to finally hear there are other people with my same issues and challenges who can understand what I'm going through and that I can lend a sympathetic ear back.

My name is Susie, I post on the crohns & chronic pain boards. I am on Remicade, as I cannot tolerate steroids, I go into congestive heart failure. Yes, you are having a reaction to the Remicade and your dr should order pre-meds for you. I am going into my 3rd yr of Remicade. I had a reaction on my 3rd infusion, chest tightness, could not breathe and the pain in my left arm & chest was awful. I thought I was having the big one. So, I was given IV benadryl and soluable medrol. We were able to resume the infusion after awhile but never increased the rate of the drip and I did fine. Now, I get pre-meds on all Remicade infusions. I still get the IV benadryl and I take an Allegra the night before. Had to stop the Soluable Medrol, we even dropped the mg to 20mg and I still had problems. I go every 4 wks for my infusions, plus I am on Imuran, dr says its suppose to enhance the effects of the Remicade.

If your dr is till refusing to believe its a reaction, got to the Remicade site and print it off & take it to the dr. Hope you are doing well.  Susie

Hi CaMama,

I am given my benadryl in my iv, same thing when I was getting soluable medrol. I just do not tolerate steroids and it has nothing to do with the Remicade. The only thing I was ever given pill form was Tylenol.

If I go to 5 wks I start getting sick, 6 wks I am hospital material. Every 4 wks is fine for me, I have a port in my chest, I had terrible veins before starting Remicade and they got finished off pretty quick, so now I have the port and its so much easier. I would spend over a half a day at the hospital, mostly it was them attempting to find a vein that did not blow. I have had as many as 6 veins blow a morning and thats not really how I wanted to start my day. Sometimes I have to get my infusions at a 2 week interval, just to give the Remicade a good kick start. Say I go for a treatment on my normal scheduled day, but afterwards several days go by and I don't feel any better, so we schedule another infusion 2 wks later and that so far has worked if an infusion does not work. This is probably due to me being on it so long.

The only time my hair started coming out was when I was put on Asacol, and when I first started the Imuran it fell out some, but stopped. Could it be some of your other medications causing this?

I had a terrible flare hit me New Yrs Eve a yr ago, I had the bad diarhrea & vomitting thing, blood in the stools, doubled over in pain. Well, I was admitted, they called in a gi to take care of me, after me making it very clear I do not tolerate steroids, he went ahead and gave them to me by iv, I was so sick I didn't know it. He had me on 60mg of Pred and by day three I swelled up all over and could not get my breath, he came in to see me while he was doing rounds, took one look at me and said when did this start. I said I told you I do not tolerate steroids and obviously you did not listen, I have a three day window before the CHF kicks in and today is day 3. So, then it was but I started you on a low dose, 60mg, 40mg, & 20mg over a three day period. I said well you are not listening even now, again I do not tolerate steroids this is why I am on Remicade & Imuran. My gi was out of town so this is why I saw this guy. I have found so many drs do not listen and always think they know best. I get scared every time I get put in the hospital.

Well, I need to go to bed its so late. Take care & will talk to everyone soon.  Susie

The last 2 infusions I had, I had some allergy problems. I already take pill form bendryl and tylenol prior infusion, the doctor talked me in to trying the steriod to avoid the reactions I'm starting to have. I am currently having liver problem and seem to be extra sensitive to everything....so, I agreed to try it for now. I just hope the steriod is out w/in 24 hours AND the fact it is one dose I won't react to it.

I cannot understand why the hospital nurses won't use your port. I wonder if you can insist on a nurse on duty who specializes in them when you are there (of course, I hope those instances are very far and few between for you) to help you out with that. I don't know enough about them to know any reasons why they won't use it.

Take care.

Straydog, I still cannot believe the nurses at your hospital. I hope the new med pump helps you out a lot. How is your grandson doing?

Erin - they are having a hard time finding veins. I end up getting poked a lot with nothing to show. The nurse says the veins are just shadows. The only reliable vein is in one arm in the inner elbow region (if there is a name for this area, I have forgotten it.) This last time we tried one forearm, the vein broke and bruised right away and when the nurse tried to flush it to see if it would catch....I shudder to think about it, but OW!

Oreo - the itching is a reaction to the infusion. I'm not sure what else I could take. The zyrtec is a 24 hour drug - and my itching started around the 12 hour point and makes me too sleepy to have taken more even if I could. And since it is similar to bendryl and so forth, I probably can't take anything else on top of it. It was too "all over" to really put hydrocortisone on it. It is also possible that the tiredness the zyrtec gave me wore off and the jitteriness of the solu-medrol kicked back in giving me the itches. Who knows.