starting remicade

1st infusion monday afternoon.  any thoughts, tips, suggestions etc?

pretty nervous but it's time.

thanks!

I was so nervous before my first infusion and it really was a piece of cake. Don't stress too much (easier said than done, I know!).

I had Remicade over the span of 2.5 years and 3 different GIs so they all did it a little different. Some GIs will do premeds like Benadryl in case of reaction. 2 of my GIs said medicating "just in case" was unnecessary but 1 wanted me to do it. I refused. When I actually DID react, 2.5 years into the infusions, Benadryl was administered immediately and it was fine. I don't think it's necessary but you can talk with your GI about it. If you get Benadryl, you'll be loopy and may want to just sleep. Since I didn't get it, I brought my laptop, movies, food, books, etc and either worked, studied, or caught up on my reading dependant upon the time. some places have TVs, too, that you can watch.

They will likely go really slow so expect to be there longer than future infusions. When I received it in the hospital, it took 1-2 hours more because I had to wait on the pharmacy to send up the meds. When I received it in the doctors office and infusion center, they got started on it as soon as I got there.

I was usually pretty tired after mine but no other issues. Sometimes I went back to work/class but sometimes I went home and took a nap. I'd clear the schedule the rest of the day if you can.

I saw a change within a week or two, but that's pretty unusual I think. I hope you see relief soon - I was in the middle of a big flare, too, when I started and it was a miracle drug for me. It gave me my life back.

There's not much to it. I get premeds of a couple Tylenol and a Benadryl, they start the IV, and I take a nap or listen to my iPod. The only bad thing about it is it can cause rapid healing, leading to scar tissue formation and an obstruction. But if inflammation is that bad, the youknowwhat is going to hit the fan sooner or later anyway. Other than that, it keeps any new inflamation form starting (seen via CT scan and surgery) and helps quite a bit with symptoms.

Mtgman.....I was like you.  When I went for my first infusion, I was so nervous.  I heard all these horror stories about breathing problems, and people having reactions.  When I got to the center, I had to wait for a chair..which didn't bother me because I was so nervous.

Eventually I got a seat and the nursing staff was real nice.  They hooked my IV up, I laid back, and then.....nothing.  I sat there for about 2 hours and then the IV was done.  I remember thinking "This is what I was scared of?" 

As far as how long it will take to feel results, everyone is different.  I felt the results the same day.  I got back all my energy.  It felt like a shot of B-12.  Also, my trips to the bathroom went down drastically.  But not everyone is like this.  Some have pain afterwords.  Some get tired.  I can't say how you will feel, but don't worry about anything.

My only suggestions is to bring a good book with you and your iPod.  Where I go, a lot of people bring their laptops and some watch movies.  I would say bring something to keep your mind busy and off the IV.

Also, don't worry so much about the pre-meds.  I know a lot of people on here tell you to take Tylenol and Benidryl.  I have never taken these before an infusion.  Where I go, they give you only 15minutes worth first to test you.  If you feel something, then they will give you something for it.  I don't know where you are or how they do it by you, but I like this way better.  No need to take unneccessary meds if I don't need them.

Good luck and let us know how it went.

Oh, I forgot to mention, my husband saw significant improvement after his second infusion.

PV

Positive thoughts only there my friend. This IS going to work well for you.

so 4 days after my 2nd infusion and i still feel terrible- bleeding and all...oh well i guess itr wasn't the 1 dose miracle for me...still keeping my fingers crossed though!

I just had my first injection a week ago and so I am trying to see what effect it will have. So far I still have pain in the gut at about 4-5 on a scale of 10. I've noticed that my temperature will jump up to almost 100 the last two days.

i was told that it can take up to 6 months until the remicade works. prednisone is a good idea to help you along. Patience dude.