Anyone with food allergies doing well on Remicade?

I've been fighting for so long trying to not take drugs for this DD. Been on Entocort lately, but it only worked for about a week and a half and my arthritis is now back with a vengeance and the guts are not so hot either (fistula, abscess, stomach pains, weight loss.) Doctor says Remicade is better for me than any sort of steroid due to my diabetes. Still, I am SO scared of all the potential side effects from Remicade. I am so allergic to so many things. They are gonna give me IV Benedryl before the infusion, but I keep envisioning my airway swelling up and doing me in. Yeah, maybe it's irrational, but when a tree nut will kill you or a piece of fish, it's hard not to get freaked out right now.

Anyone with lots of food allergies done well on the Remicade? Anyone that loves Remicade please tell me how it helps you. All I want to do is cry now. I am so scared and can't believe my life has come to this.
P.S.- did you see any relief from arthritis on this stuff? I can deal more with the GI stuff right now. The arthritis is just out of control. Thanks.

Thanks so much. I'm at the desperation point too. I can barely walk, dress, drive my car, etc.

I have to go in on Monday for my TB/Manto (sp?) test. Maybe I'll ask to see the infusion center while I am there and see if I can talk to one of the nurses. I've heard about taking Tylenol prior to the infusion for possible headaches, so I'll definitely be doing that. Being they are going to give me IV Benadryl, they said I'll need a driver with me, so I'll definitely have someone there with me. (Probably good 'ol Mom. She's a Chronie too.)

I was terrified my first infusion, too. Which of course made my symptoms even worse!

I had no premeds and no issues at all until I was on it over 2 years and built antibodies to it.

They really watch you very closely, and you're in a place where you can receive medical attention if needed. I've yet to hear of anyone dying from an infusion.

It made my arthritis go away - and gave me my life back. I went back to eating anything I wanted, never having pain, and living a normal life. Remicade was a God send for me.

I was very scared also. I had my mom and dad take me! You should be just fine. The clinic should be prepared if any emergency were to arise. I get Decadron 15 minutes before my infusion. I also take 2 extra-strength Tylenol 1 hour before the infusion and right after the infusion. I don't need Benadryl, but that should help prevent a reaction. Good luck to you!!

I have lots of allerigies, and I did fine with my infusion of remicade. Also, like chroniemom said, you are monitored very closely.

Just bring something to read - I am a big fan of reading trashy magazines when I am nervous. Nothing passes the time and keeps me calm like looking at pictures of celebrites without make-up

On a more serious note, tell the doc about your nervousness - he might give you something to take the edge off.

Keep us posted and know that you will be in my prayers.

I have the same allergies as you. Fish, Cashews, asacol, bactrim. I'm going for my 4th infusion on Friday everything has gone fine. The last two I didn't get the benedryl or Tylenol either. It's ok to be nervous. I still am each time I go.

I took allergy shots when I was younger. I recently was retested and showed little/no allergies to the most common things people are allergic to. I just had my fifth infusion of Remicade. I did perfectly fine the first four times but had a horrible allergic reaction this last time. I've never had horrible allergies or anything like that. So I didn't know that the reaction I was having was an allergic reaction. My whole body got very hot and red in a matter of about 15 seconds. My chest tightened and I could hardly breathe. I started feeling dizzy and said "I feel funny" to the nurse. They turned off my IV, gave me more meds, and then restarted the infusion at a slower pace. I was fine the rest of the time, but have been itching ever since. I called 911 about 10 days after the infusion because I had the same kind of reaction that I had at the hospital. It's 4 weeks later and I'm still itching. My doctor wants to try the Remi one more time with different premeds this time. I'm used to feeling sick, throwing up, anything of that nature... but this whole not breathing thing was a completely different experience. It is rather uncommon to have an allergic reaction to it (or so I've been told). My advice is to try it. The Benadryl through IV should help. There should be plenty of nurses around, so you will be fine. It is most common to have a reaction during the first or second infusion, but some people don't have a reaction until years later. You should be fine. GOOD LUCK!

Hey all,

Just wanted to poke my head in and say all went well yesterday with the Remicade infusion (what a relief.) No allergic response or anything (pre-medicated with 50mg Benadryl to be on the safe side.) Met a couple nice people that were getting their infusions and had good results each for two years, so that was encouraging. I think I'm already feeling better! My hands and feet don't hurt nearly as much, I was able to sleep the night through, and I even took the dog for a 2nd walk last night because it was such a beautiful evening. I was supposed to contunue to take my Entocort for the next 2 weeks, but I had weened myself down to 3mg in the morning, and I even stopped that this morning I felt so good. (Shh... don't tell my GI.) Steroids have been hell on my bloodsugars being diabetic. The sooner I was off them, the better. Had a fairly normal BM this morning, and bleeding/drainage has been to an absolute minimum today.

Thanks again to everyone for their words of encouragement and your experiences. Now to get healthy and get ready to play some golf in the Spring!

Yeah, I know. I haven't been on the Entocort very long. Maybe 3 weeks? It was just a stop-gap until I got on the Remicade. I had been on just the one pill for a week already. I honestly just couldn't take my bloodsugars being out of control any longer. Absolute worst drug ever for a diabetic. I really take care to control my diabetes, and can't stand that drug messing it all up. High bloodsugars can cause weight loss for me very quickly, and I've lost about 25 pounds since May. I need to eat and be in control of the bloodsugars to gain some of this weight back.

Hi That is good news so glad things went good, I met some nice people when I got mine too. lol gail

Good for you! Eat away! :)

Miguel

Good for you ! I hope things only get better and better for you. These diseases can get you down pretty low... good doctors, knowledge, a sense of humour and a good support system will get you through! Good luck and keep us posted on how things are going.
Michael