Remicade and allergic reactions during infusion

** Originally posted by jojocat **

How do your docs and infusion nurses handle any infusion reactions you experience? Have you continued receiving infusions by using premedication to reduce any allergic reactions?

I had to be off Remicade due to neck surgery and when I restarted I have had infusion reactions every single time. All have been reversed and I am continuing the drug, because for me it is a lifesaver. My goal is to do a bit of research to see what can be done so that I can continue taking Remicade for a long long time.

Thanks!

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** Originally posted by Emsmom **

My daughter has never had a reaction, but we do always premedicate with benadryl and tylenol.

Liz

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** Originally posted by n2beingme **

Hi JoJo,

When I was getting my first remicade infusion, towards the end, I started getting a bad headache and started feeling a little odd and my blood pressure went up, so they slowed the infusion speed and my headache got better.

I had to have blood work in between my 1st and 2nd infusion and I like many others had been on Humira and Enbrel prior to Remicade and was getting no results, in fact my Sed rates were continuing to rise and I have been just staying in a flare. My rheumy had wanted me on Remicade since I started seeing her, but there was a insurance issue but was finally resolved in March.

I had gone back for my 2nd remicade infusion. When I was 30 minutes into the infusion, I began having a very bad headache and just did not feel right. They stopped the infusion and called my doctor. She ordered the infusion nurses to give me 2 tylenol and iv benadryl and begin the infusion again.

When they did, I was able to let they know I was not feel ok and could not breathe. Which is when they called the Fast Response Team. I remember being moved from the lounge chair I was in and was than in a hospital bed and my blood pressure had soared and my chest was very tight. I had an emergency EKG, which thankfully turned out ok. My rheumy's office is very close to the hospital and she came over to the hospital and was there with me. It turned out that I was allergic to benadrl, which I have taken before and never had a problem, but did on this day.

My rheumy and I spoke and I was beginning to feel better. She ordered me some anxiety medicine and she asked if I would be ok in starting the remicade again and I said yes, since overall I had only had maybe 30 minutes of the infusion. I have eaten breakfast that morning and she said they were bringing lunch and she wanted me to eat and than to restart the infusion in 45 minutes.

So after having lunch and the wait, they restarted the infusion. After 15 minutes, my blood pressure 156/105 sky rocketed and my heart beat was fluttering is the best word I can use and I could not breathe and the next thing I remember is waking up in the ER with my mother being there.

The kicker from this whole experience is that in from the ONE infusion my sed rates came down, the first time in 2 years since being diagnosised. In speaking with my rheumy, she said it is unsafe for me or feels at this time it is unsafe for me to try remicade. Since after this experience, I am now very hypersensitive to medications I took for years before.

Debbie

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** Originally posted by MikeK **

n2beingme: Yikes, Debbie! I'm so very sorry that you had such a bad experience with Remicade. :( That must have been so scary. I'm glad that you're o.k. What other treatment options have they discussed with you?

jojocat: This discussion is taking place in two seperate threads. To make things a little easier for you to find, here's a link to the other thread: http://www.psoriasis.org/forum/showthread.php?p=286803#post286803.

I hope this helps.

Mike

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** Originally posted by n2beingme **

Thanks Mike. I am currently taking MTX, Topamax, Cymbalta, Oxycontin, Folic Acid, Omacor (Omega 3) - My rheumy said she thought my next course of treatment would be to add Imuran and after a month go back to either Humira or Enbrel. I am waiting for my insuance approval for pool physical therapy, which I think should also help. I also had panic attacks brought on from the allergic reaction which I am getting help for and really glad I did. I just stay as positive as I can.

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** Originally posted by davidk46219 **

First Remicade infusion I was rushed to the hospital they thought I was having a hart attach I had to stay overnight then did a stress test and ultrasound of my hart Everything was ok I think they just rushed the infusion to fast I now premedacate with two Tylenol and a Benadryl ½ hour before Yesterday I had my 8 week infusion I broke out in welts I took another Bendrill and they calmed down They also slowed the drip In some states it is mandatory to premedacate before a Remicade infusion check with your doctor All in all I believe Remicade to be safe it you follow the protocol Blood test two weeks after to check liver functions and blood count
You can check on drug reactions at http://www.drugs.com
Dave K

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** Originally posted by jojocat **

I have learned that Centocor is studying how to desensitize patients who have infusion reactions. The rheum's office is getting a copy of the study to see if it might work for me. I'll keep you all in the know.

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** Originally posted by Stillworking **

I am always premedicated with 50mg of benedryl IV and 1000mg of tylenol orally prior to an infusion. So far I have been lucky and without any serious reaction. In fact I take public transportation to and from the infusion appointments. I have noticed that the years of IV's and prednisone played hell with my veins and last week a port was surgically implanted in my chest so that I can continue therapy.

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** Originally posted by aloha1961 **

My first two remicade treatments went great and i even started to see some improvement in my psoriasis (sp) but then my next two treatments i had bad reactions and was given a shot of benedryl (didn't work) and then a shot or steroid (it worked).. then my next treatment they had me take predisone before my injection and i had the worst reaction about 5 mins into remicade at which point my doctor and i decided it was time to stop remicade and try humira..

i had 2 humira injections and my arthritis is better and seein some improvement in psoriasis... i have psoriasis on my legs , scalp, elbow, knees... i hope the humira gets rid of it because summer is here and i want to wear a bathing suit...

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** Originally posted by mandrews_29 **

I take 30 mg. of prednisone the night before, then 30 mg. of prednisone 1 hour before my infusion then once I get there they give me two tylenol and 1 benadryl plus an anti-biotic via the iv before they start the remicade.

I hope this helps.

Maine Gal

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** Originally posted by jojocat **

I take prednisone and now benadryl each day for the three days prior to an infusion. I used to take claritin, but have switched. The morning of, I take tylenol and benedryl before I drive over to the infusion center. Once in the chair, I get a shot of steroids in the IV. I am still having infusion reactions every single infusion and once the reaction begins, the nurse uses a second bag of IV fluid to give me another dose of steroids and a dose of antihistamines. The nurse stops the infusion when they add other meds and then they let saline run for 15 minutes. They run the Remicade drip something like 8 drops of medicine a minute during the infusion itself. It seems to work.

My only worry is that I have a very intense vascular response (high bp, flushing, chest pressure, increased temp) to the meds and I think I may have had a tiny little stroke after my July infusion. I lost vocabulary and the ability to spell any word I wanted to, for about a week to 10 days after. This has completely reversed itself. I actively practiced saying and spelling words for a few days and feel like I got back whatever I lost. I usually do not take asprin, but am going to inquire about adding that to the pre-meds.

I get a tremendous headache from the combo of meds and usually sleep the next couple days. I cannot pin point exactly when I think the possible stroke happened. I took strong pain meds in order to endure the headache. My last infusion did seem a little rougher than usual, but the nurses and doctor are really great. They work with me to get me through the reactions. 45 minutes after the worst of the reaction, I was able to get up to walk to the restroom. After an infusion, I stop at Wendy's and get a Frosty to eat on the way home and another for later and then go home and sleep.

Anyone else experience anything like this?

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** Originally posted by Momelie **

Knock on wood (my infusion is tomorrow) I've never had a reaction to Remicade, but I've seen some from people in the infusion room with me.

Most people premedicate with Benadryl and Tylenol - I'm not able to, since I have to drive myself home. One lady had solumedrol in her IV with the Remicade.

N2beingme - do the doctors know for sure that it was specifically Remicade that caused the reaction? The reason I ask is that my mother had a very similar reaction to her chemotherapy (Taxol) and wound up having a Code Blue right there in outpatient oncology. It turned out that the actual allergy was to an ingredient in the suspension in which the drug was delivered. We wound up having to do a TON of paperwork, authorizations, etc. but on special permission from the drug company and insurance the hospital pharmacist was able to compound the Taxol into an IV form without that particular suspension, basically made it from scratch, LOL.

That probably wouldn't work for most drugs, but its worth a thought.

I know the benefits of Remicade - I've been on Enbrel, and it didn't work - Remicade's been my lifesaver. I'm hoping I can stay on it for a long time. I hope you can find some way to make it work out for you.

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** Originally posted by rosee_posey **

Hello Jojo,

EVERY infusion center has a pre-set methodology of how they will handle any allergic reactions. Usually front line methods include lots of steroids and benadryl, all the way up to getting intubated in the emergency room - ya don't want to go there!

I have been on Remicade since 2001. I went off in 2003 because of stupid insurance woes, and I went back on in 2004 with a lot of precautions (no reactions however - hooray!).

The first thing my Rheumatologist did was put me on a course of steroids, before my infusions. I was put on a Medrol pack one week before my infusion, and then I was given solumedrol and some benadryl in my IV while I was there. After about a year of this (it seemed to work), we dropped the Medrol pack and now I just take solumedrol and benadryl into my IV.

That's how we did it. Ask your doctor if there are any other "tricks" they can pull to get that Remicade to slide in better...slowing down the drip, stuff like that.

Hope this helps,
- rose

How do your docs and infusion nurses handle any infusion reactions you experience? Have you continued receiving infusions by using premedication to reduce any allergic reactions?

I had to be off Remicade due to neck surgery and when I restarted I have had infusion reactions every single time. All have been reversed and I am continuing the drug, because for me it is a lifesaver. My goal is to do a bit of research to see what can be done so that I can continue taking Remicade for a long long time.

Thanks!

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