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Stopping premeds prior to Remicade Infusion

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Posted 1/13/2018 11:13 PM (GMT -5)
Has anyone stopped taking premeds prior to their Remicade infusion?

I have been getting premeds since my 2nd Remicade infusion. With every infusion the premed side effects seem to bother me more...steroids I pee every 2 hours for 48 hours and my mind races. The front part of my forehead feels strange. My joints feel better (the arthritis does not hurt as badly) but they feel floppy...too loose. The benedryl makes me severely dizzy ...and tired, (4 hours) I get this feeling like I have swallowed a golf ball and it won't go down for a couple of hours..and I get restless legs for at least 48 hours. And that is before they start the Remicade. (I had a severe reaction to flagyl where I could not breath...sorta like the golf ball plus a severe asthma attack) The premeds make me feel like I am just on the very edge of having that flagyl experience again. So I fear that if I did start to have a reaction to the Remicade any more steroid or benedryl would just do me in.

So once I told my GI he said we are doing it without any premeds next time. You didnt have any antibodies last time we tested, you are on methotrexate, so lets try it without any. Then I went to see my CRS and he seemed very concerned ....like maybe I should rethink not taking the premeds....

Now my infusion is Tuesday and I am in a panic...... Please share your thoughts on this....

Thanks guys,

Clo
Posted 1/14/2018 12:49 AM (GMT -5)
After my third infusion of Remicade I had a bad reaction where I got extremely weak, had rapid short breathing, rapid heart beat, and very low blood pressure after I got home. Talked to my doctor and she thought that was probably a reaction to the steroid I was given (sorry I do not know the name). Since then I only get a tylenol and Claritin pill. I used to get Benedryl but that made me very sleepy so they changed to Claritin and I do not get sleepy at all, although being sleepy makes the four hours go by faster!
Posted 1/14/2018 7:07 AM (GMT -5)
I never did pre-meds for close to 5 years. Now I do steroids and benadryl bc I had a reaction. If you're extremely worried, maybe you could do a half-dose this time?
Posted 1/14/2018 11:49 AM (GMT -5)
I only take IV Benadryl and Tylenol capsules as premeds- no steroids. So far so good. Maybe trying this combo would work for you? I do not take the pill form of Benadryl because the drowsy side effects kick in too late when I'm driving hom. Usually the Iv form seems to kick in faster and be gone by the time I am leaving although last time it lingered on a lot longer and was quite bothersome. Good luck with what ever route you choose!
Posted 1/14/2018 2:50 PM (GMT -5)
I had a bad reaction on my 3rd infusion. My BP shot up & I had chest pain. Of course they stopped the infusion, gave me IV Benadryl & Soluable Medrol & reduced the infusion rate. Once they restarted the infusion I did fine. However, because of the above, my infusions started at 7:30 & ended at 2:30!! All said & done I left the hospital at 3:00, a very long day each time.

I have ready many posts here of people using Tylenol & Claritin for reactions with great success. In fact, this is what their drs told them to do. So, knowing this, if this were me, I would take the above 45 minutes before my infusion rather than risk another reaction. I disagree about reactions & antibodies, it took me a long time before I developed antibodies to Remicade. I would not do an infusion without taking something, my thoughts are you will have another reaction.
Posted 1/14/2018 3:13 PM (GMT -5)
Two years ago when I started taking Remicade, I was only given Solucortef IV as a premed. After a year and a half, after one of the infusions, I had a severe rash from head to toe that lasted for 3 days. When I told the doctor at the infusion center, she recommended adding Avil IV to the steroid IV. My GI approved of this. The Avil makes me dizzy and drowsy but by the time the infusion finishes, the feeling of drowsiness would have passed. Last time, I started to have a rash during the infusion. The doctor assured me that that was not a problem since I've taken premeds.
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