Crohn's Disease & Ulcerative Colitis Support Group
Crohn's disease is a systemic inflammatory bowel disease (IBD) of unknown cause, that results in chronic inflammation of the intestinal tract. It can affect the entire gastrointestinal tract from mouth to anus, and can also cause complications outside of the gastrointestinal tract. There is no known medical or surgical cure for Crohn's disease, but there are many medical...
Long Story- Early Signs Of Remicade Allergy?
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So Ive been getting Remicade since January 2007. I was supposed to take Purinethol at the same time but since I was away at college (I had to fly down to get my Remicade treatmentstalk about extra expenses!) I was weary about starting it. Then came the summer which between traveling and such, didnt feel right, and then October I started it for two weeks, then forgot about it and gladly stopped taking it because I was so scared after reading some of the side effects people had. I finally began taking it in mid May. Starting in December I started noticing that whenever I went to get my Remicade treatments my arms got pink and blotchy. My doctor didnt think it was anything to be too concerned with but checked in on me anyway to make sure. My last infusion, last July, something strange happened- I noticed that for some reason I felt like I couldnt take a deep breath, so I forced myself to thinking I was just panicking a bit and needed to calm down. However, when I did I felt something in my throat come up- not throw up or anything, more like something was trying to jump out of my throat- and suddenly pulled some chest muscles (like a V shape pattern) that hurt a bit for two days after. I only had it in for a little bit since the IV fell out and they had to put it in my hand where it accidentally went into my tissue rather than my bloodstream and I was fine. I thought it might be an allergic reaction to the Benadryl since before my Remicade treatments I never really used Benadryl and once when I forgot to take it and was given a shot of it before my treatment it totally knocked the wind out of me (to the point where I actually said I cant breathe- which is stupid, since if you can say it, you can breathe!) and I figured that I havent had an allergic reaction to the Remicade yet and nothing happened when they put it in the second time (in my hand). But I just saw an allergist today and she thinks that what I experienced may be an early sign of an allergic reaction to Remicade since apparently you can apparently have a 10-20 times worse reaction to something injected in your bloodstream rather than your tissue (which would explain why I had a reaction the first time and not the second time the IV was placed in me). I really dont want it to be the Remicade since it seems to be working and helping my Crohn's, but at the same time Im afraid what could happen if it is. I was wondering if anyone had experienced this or knew someone who experienced this or had any (yes, ANY) information regarding this. Could the Purinethol have lowered my tolerance to Remicade? Is it just a bad reaction to Benadryl?I'm sorry for the looong story, but I wanted to provide as much info as I could so that everyone knows where I'm comming from and my situation.
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You might need more of a pre-medication for the night before your treatments.... Benadryl on the morning of, and a Prednisone (10mg or 20mg) the night (or) morning of the treatment.
As far as the reaction... I know what you're talking about... feels like a belt is around your neck... tight... hard to take a breath... start to see 'light spots'... can't take much of any deep breath... but believe me, there is a way to get through this.... (without having the Nurses stop the Remicade treatment and do a saline flush.... ) Message me... if you want
On a side note, I personally told my doctor I wouldn't take Purinethol because it is a known carcinogen. Just want you to be informed in case you didn't know. For some, the benefits outweigh the negatives.
Perhaps, if Remicade has worked for you in the past... you could talk to your Doctor about lowering your dosage of Remicade... just until your body CAN handle the infusions (without having the spine/bone pain).
It's just a thought... and then when you realize your body can tolerate it at lower dosages/levels... perhaps your doctor can bump you up to a more tolerable dose...
Good Luck!