So, this might take awhile, grab a drink.
I was diagnosed with crohn's disease back in 2002. I was 17 at the time, and I did a normal dose of steroids and other medications before the insurance company signed on to let me have remicade. At that time, remicade was fairly new to the scene, and they didn't do as much blood work checks as they do now.
I was fine with remicade, I only had one allergic reaction back in 2003 (It was my 3rd of 4th time on remicade). They just slowed me down, gave me a liquid shot of benadryl and I was fine. I stopped taking remicade in 2006 (against doctor's orders, I know I know), and I was fine until this past year. I came out of remission slowly at first, but then progressively worse. Finally went to go see the doctor and found out I had a bunch of ulcers and hemorrhoids all up in my colon, plus further progression of the disease in my small intestine.
Doctor tried Mercaptopurine, but I felt even worse with that after taking it for about 2 weeks. Finally decided to go with remicade again, and my first infusion went fine (Gave me a shot of benadryl again). That was back in May 2011.
Yesterday (July 25th) I went in for another remicade (Note, I moved states, got a new doctor, and a new place for the infusion), and this time the doc and I decided not to try the shot, to see if I would still have an allergic reaction. Well, come to find out that happened again. They stopped my infusion, gave me the shot, and tried to start me back up again on the remicade. I still reacted (At this point, I'm cloud nine on benadryl and have a huge amount of anxiety, to the point of having an anxiety attack). The doctor ends up calling it quits because she doesn't want to risk another reaction.
So, after wasting a copay and the payment of the remicade, the infusion place wants to schedule another try to give me remicade. Here are my concerns in bullet formatted style:
Here are my questions:
I plan on calling my doctor tomorrow and trying to get him to switch companies to do my infusion at. I'm just really worried/scared that I'll have some kind of horrible reaction again to remicade. I'd love for someone that has had this happen to them give some comments on their experience.
I was diagnosed with crohn's disease back in 2002. I was 17 at the time, and I did a normal dose of steroids and other medications before the insurance company signed on to let me have remicade. At that time, remicade was fairly new to the scene, and they didn't do as much blood work checks as they do now.
I was fine with remicade, I only had one allergic reaction back in 2003 (It was my 3rd of 4th time on remicade). They just slowed me down, gave me a liquid shot of benadryl and I was fine. I stopped taking remicade in 2006 (against doctor's orders, I know I know), and I was fine until this past year. I came out of remission slowly at first, but then progressively worse. Finally went to go see the doctor and found out I had a bunch of ulcers and hemorrhoids all up in my colon, plus further progression of the disease in my small intestine.
Doctor tried Mercaptopurine, but I felt even worse with that after taking it for about 2 weeks. Finally decided to go with remicade again, and my first infusion went fine (Gave me a shot of benadryl again). That was back in May 2011.
Yesterday (July 25th) I went in for another remicade (Note, I moved states, got a new doctor, and a new place for the infusion), and this time the doc and I decided not to try the shot, to see if I would still have an allergic reaction. Well, come to find out that happened again. They stopped my infusion, gave me the shot, and tried to start me back up again on the remicade. I still reacted (At this point, I'm cloud nine on benadryl and have a huge amount of anxiety, to the point of having an anxiety attack). The doctor ends up calling it quits because she doesn't want to risk another reaction.
So, after wasting a copay and the payment of the remicade, the infusion place wants to schedule another try to give me remicade. Here are my concerns in bullet formatted style:
I don't like my doctor, and I don't like the infusion center. I don't have confidence in either of them to give me due care for the infusion.
I've had a reaction before and with benadryl felt fine, but I don't do well with drugs that affect my state of mind (I've done other recreational drugs and I freaked out similarly). They want to give me the shot of benadryl before I the infusion starts next time, which I've done in the past.
I don't want to risk paying another copay and medication payment if this remicade infusion doesn't take. That's close to $1,000 in a week.
During my last infusion I felt like I couldn't tell the difference between the panic attack or a reaction. Apparently I'm very sensitive to mind-altering drugs as stated above.
I don't know what I should do. I have an alternative site to get my infusion at if the doctor signs on to it. I'm just left with alot of doubt in the medical staff at both the doctor and this infusion site.
Here are my questions:
- Have you had an allergic reaction to remicade and still been able to get the drug with proper medical preparations?
Does anyone else get high anxiety with taking benadryl in liquid form? Is this a normal reaction?
I can't differentiate between a panic attack and an actual allergic reaction (My first allergic reaction was an itchy throat/chest with a cough). How can I not freak myself out, and know the difference between the two?
Are there any techniques or tips I can do to help control my anxiety while on benadryl? I feel helpless and completely out of control when they give me the shot. I get worried that my heart will stop dead or something crazy.
I plan on calling my doctor tomorrow and trying to get him to switch companies to do my infusion at. I'm just really worried/scared that I'll have some kind of horrible reaction again to remicade. I'd love for someone that has had this happen to them give some comments on their experience.
Would you like me to move this thread to the Remicade forum? You may get some more insight then. Or by all means, post a thread there.