Remicade Update

Well I just wanted to give an update on my Remicade infusions. So far I've had two infusions. I have not experienced any bad side effects or anything like that, but unfortunately I have not felt any better either.  I'm not giving up yet. My doctor came and talked to me during the last infusion and said that it could still take time so not to worry yet. I have read about people who felt like a new person the day after their first infusion, and others who said it took a few weeks or months to tell it was really working.

When I had my first infusion the nurse noted that my face and chest were kind of red. During the last infusion my face, chest, neck, back, stomach and arms were red. The nurse was worried that I was having an allergic reaction. She got the doctor and he agreed. I'm not entirely sure that it was because I felt completely fine. I wasn't having trouble breathing, I wasn't itchy, or anything like that. It could have just been from all the warm blankets I had on me. But they want to be on the safe so that next time it's not worse, so for 3 days before the next infusion I have to take 20 mg of prednisone (steroid) and then they will give solumedrol (IV form of prednisone), wait 30 minutes, and then do the Remicaid infusion. So it will take 2 1/2 hours instead of 2, but that's ok. So much for never taking prednisone again, but taking it for 3 days shouldn't give me any bad side effects. Actually I will probably feel great during those 3 days. :) Here I am, wrapped up in all those blankets!

Also when I had the first infusion, I made a special effort to drink lots the day of and the day before the infusion. It still took the nurse 4 tries to start the IV. The next time she tried first in the same spot and got it on the first try. It is also the same spot they used when I had my exam under anesthesia. It's uncomfortable spot on my wrist, but I guess I've worn out all the other places!

 My doctor wanted me to call him and let him know how I am doing. I called and left a message today, so I am waiting to hear back. I don't know if he will tell me to do anything different, or just wait for the next Remicade infusion. We flew home this weekend and went camping with my mom and all my siblings. We had tons of fun, but last night when we got back, I unpacked, and laid on the bed for awhile. I thought I was just resting, but I fell asleep and was too tired to do anything else. I did get up after awhile and get ready for bed, and went back to sleep before Chris was in bed. There were a couple days when we were gone that I didn't feel great, and I think camping and traveling just wore me out. Today was my day off and I haven't really done anything productive. I need more energy! Haha, don't we all. :) I guess it's ok to have a day to relax and rest every now and then Anyway, I want to document if this medication is helping me or not, so that's why I am writing this. I will keep updating, and I will post about our vacation soon!