For those who have tried remicade | Arthritis Information

I posted that I survived my first infusion last Thursday. Friday I felt pretty good. Saturday I slept in, worked out for 25 minutes on my elliptical, cleaned the house for about 1.5 hours, took a shower and went to the grocery store. That was more that I have been able to do recently but I was exhausted afterwards so just made like a couch potato for the rest of the afternoon.

Sunday, I woke up achy and sore. I managed to bath my two dogs but that was it. The fatigue was awful and the pain is returning. I set my clock to get up and work out this am but was just too exhausted and after a trip to the potty realized I hurt too much so went back to bed until I had to get up for work.

My hands are even more swollen than before the infusion and are SCREAMING. My hips, knees and chest really hurt and I ache everywhere else. The fatigue is awful. I know in my head it can take a couple of infusions to really work but my heart isn't listening. Is it your experience that the infusion where off that quickly? Do the benefits last longer with each infusion? I am scheduled for another infusion next week Thursday than I will go to once a month. My dose is 5mg per kg of weight.

I was so hopeful and today I feel so let down and depressed. This has to work, there isn't anything else for me to try.
Michele,

I always get a burst of energy the day of my infusions. So much so that I have a hard time going to sleep that night. Since you've only had 1 infusion, I wouldn't be discouraged at all. It took me 3 infusions before I felt any difference and then it was so subtle, I almost missed it. I slowly got better and better till finally I thought I had reached full-blown remission. In other words, after 16 yrs. of constant pain, I had finally reached the "pain-free" point that I thought I'd never see again. After you get the right amount of remicade in your system, it shouldn't wear off between infusions. If it does then either dosage or amt. of time between infusions can be adjusted. That's what I like about remicade.

I hope the remicade works as well for you as it did for me. Don't be discouraged as it will probably take some time.

1) there is a reason you are given remicade with loading doses. for the majority of people it takes those for the med to reach full strength

2) you are taking it for sacroisoses...so comparing you to someone on it for RA is not really valid. It doesn't really have a big history with your disease..

quote -2) you are taking it for sacroisoses...so comparing you to someone on it for RA is not really valid. It doesn't really have a big history with your disease..

I know but I can not find any sarcoidosis support boards so this is all that I have. I was told I was still welcome to post here even though I don't have ra since they really are similar and have a lot of the same symptoms and use the same medications.

I hope it works as well for me as it did for bingethinker! I am trying to look at those couple of good days after the infusion as a positive sign. I have just been sick for so long that I want to feel better now and my patientance is wearing thin.

The good news, I found out my insurance has a 00 cap on out of pocket expenses!!! Thats still a lot of money but a WHOLE LOT LESS than we were thinking it was going to cost!
Hi Michelle, I hope that Remicade works for you. Please go to: www.pulmonologychannel.com/sarcoidosis.html

www.sarcoidosisonlinesites.com

Both of these sites have sarcoidosis forums and are very helpful. I've used both. My sarcoidosis isn't active but it's always good to keep ones self updated. Lindy

Michele, I don't think Buckeye was being negative, or saying you shouldn't be posting here, just pointing out that your reaction may be different from someone who was taking Remicade for RA. I can't remember if I ever felt it was really working for me, my dr says based on my blood work it is, I was really hoping for a tv commercial kind of reaction and I did get over the flare from hell. I hope this works for you.Yeah..what Nini said. You're kind of in new waters here and while peoples expereince with remicade for RA might give you some idea it may not be exactly valid information as we don't know how your disease will react to the med.

Believe me I wasn't trying to imply that you shouldn't post