No experience but my aunt did really well on it for about 7 years!

I am on Remicade, and the only noticeable side effect I feel is fatigue the day of the infusion. Occasionally, I've felt a little light headed and loopy, but other than that, I'm doing well on it.

I was on remicade for 5 years and only went off when I developed liver issues (doing the regular testing is important). The most common side effect is fatique; my infusionist told me to count on three to four hours of down time after it. A very few people have an allergic reaction and that's why sometimes people are given Benadryl or something similar.

I hope you have as much success with it as I did for the five years I took it - back to a normal life!

Thank you all for your replies. I feel much better hearing that you have had good results with this. I am in treatment as we speak. They let me bring my computer and there is wireless service so I am able to keep busy.

I had no idea it would take this long though. Everything I read said it was about 2 hours so that is what I was expecting. My doc didn't tell me about the "pre-meds" like presnisone, benadryl, and zantac drips that would come first. Then the 30 minute wait between the zantac and the start of the Remicade. I have been herer since 130 and the nurse told my mom then it would be about three hours. Well, its now 430 and the nurse said there is over 2 hours to go.

Im glad I brought entertainment. I also brought DVD's to watch and have my music I can listen to. I just feel bad for my mom. Her friend is supposed to come to our house when we get home. That's when we thought it would be about 430 5pm at the latest. But now I have another 2 hours to go, so I don't know what she's gonna do.

Im trying to adjust to sitting in this recliner still, not exactly the most comfy thing. But I have nowhere to go for myself, so Im stuck here! lol

Thanks for all your help,

Gentle hugs,
Jenna

Hi Jenna,
I just had my 9th remicade infusion yesterday...take it from me you will develop a routine. I wear comfy clothes and bring things like lunch and magazines to entertain myself. They will give you Tylenol and Benedryl plus I get an anti-nausea meds as well but don't remember the name of it. Some people have side effects but that is rare so don't focus on that. It works very well for me!! I need to go every 4 weeks and I am up to a pretty high dose but that has really helped with the fatigue and flare ups! I feel great on it and I wish the same for you!!!
Jen

Poor thing, that is a long day. Is that a monthly infusion? I'm sure your mom doesn't mind the change of plans, daughters far outweigh friends!

I love your avatar, I have kazillian fantasy and fairy art. If you ever get bored and are on facebook, look me up...dreamchaser, Linda. You can see all my fantasy art. =)

Hope you get better! Sending a prayer too!

Lin

I was on Remicade and MTX for 8 months until I lost my health insurance and it was the greatest thing ever! I have med resistant RA also and have tried Humira, Simponi and Embrel. Remicade was the only one that worked and worked well. I miss it so much, I can't wait to start back. The only time I had any problem was my first treatment and I hadn't had lunch before so it made me sick but once I learned better than doing that I never had any problems. Everyone I talked to while I was getting the treatment said that after their Remicade they had LOTS of energy the next day. That never happened to me. Mine was the fatigue the day after but just one day and then I was better. I hope you have as good a luck as I had while I was on it. Best of Luck!!

Thank you all for your help and advice. I am sure I will develop a routine now that I know how long it takes. I was glad that I thought ahead to bring my computer and dvd's but ended up being able to get on the net and watch hulu.com. for tv shows that I love. I was pretty wide awake from all of the prednisone, they thought I was having a reaction so they gave me more prednisone during the Remicade part. My nurse was really nice. and TG the bathroom was right across the hall I must have gone several time.

I am really glad to hear how well it has worked for all of you. That definitely gives me some hope that I will Finally find some sort of relief. I am also getting the intrathecal pain pump implanted on the 22 of May. So this will help with pain control as I have other issue besides RA.

I was wide awake from the prednisone when I got home so I took some extra anxiety meds when I got home and that seemed to calm me down. Then I took my night time meds around 1030 and fell asleep in my recliner (I have my room set up like a small efficiency minus the mini fridge and hotplate!) and didn't wake up til 4 am. That is unusual for me since I am usually wide awake between 2and 330am becuase of the pain. I am still in pain this am but I will survive knowing that there is hope in this treatment.

Thank you all again for sharing your experience with me. I really feel more confident about this treatment.

Gentle hugs,

Jenna