My first infusion was August 27th, 2008. Almost immediately the pain was gone for several weeks. A few days before my second infusion, I started to get some mild pain back, but nothing to write home about. I seem to get tired (some days more than others), so I take a lot of naps and I seem to not be able to take heat very well---but I don't think is due to the Remicade, but to the fact that I have RA.
I've also gained about 6 lbs. since Feb. 2008, but I think it's because of the 320ml. of cortisone I was given in a very short amount of time to help me with the severe pain before I had decided to take Remicade. I'm going to Weight Watchers to help me manage my weight.
I avoid sick people, I use my ‘Neti Pot" twice a day to prevent sickness and wash my hands constantly. I take high quality Omega-3 capsules, Allegra D and Nasacort twice a day (for allergies). I can also say that I've suffered from chronic ear infections in the past and I have not had ANY problems with my ears in a long time.
Remicade has given me my old life back. I feel great and like my normal self again. I haven't gotten sick and I can say that I'm virtually pain free. I wish I would have done this along time ago.
Now that you mention it, I'm also very sensitive to heat. I'm in Texas, so our temperature can get up to 110 degrees-----I stay indoors. I could tolerate it before, but not anymore.
I've gained about 10-15 lbs...my Doctor says it due to the cortisone shots I took before the Remicade. It sucks, but I feel so good that I almost don't care about the weight gain.
It's strange that you still have body aches with Remicade. It seems to me that your Doctor's taking the easy way out with the answers he's giving you. I've changed Doctor's several times and finally found one that seems to really care about my well-being.
The best of luck to you.....
Lenora,
Thanks for the reply-- you share my grandmothers name. I am very happy that I will not have to have my colon removed, but the aches are frustrating. I live in Atlanta (grew up here as well), so you would think I would be accustomed to the heat. I've been more active with sailboat racing the past 3 years and this summer was the worst for yet dealing with the heat.
I've kept my GI doctor for now, but found a new family doctor. I don't know if my weight gain was from the healing colon, or my family doctor thinks it could have been from paxil which she prescribed to help me relax better dealing with the painful gut before I started the Remicade.
I don't have RA, but I would imagine we have enountered similar frustrations dealing with strange health issues and doctors. I think my problems where triggered by excessive antibiotics. I think I had developed an allergy to my dog and found that I had a cough for nearly 3 years. Every doctor was prescibing antibiotics, which I think is what caused/triggered my gut problems.
I went to an herb shop last week and a chiropractor(strongly recommended by a close friend) this week. I didn't have much faith in either, but I thought nothing else is working very well for me... so what the heck. Each did some strange strength test, seemed really silly to me. The Chiropractor even did a short prayer before he started, anyway, much of my joint/muscle pain has vanished over the last couple of days. I started on some very high doses of probiotics, and a couple of other strange herbs. I'm staying positive and not questioning the positive changes.... coincidence or not, I don't know?
Good luck with your treatments and keep us updated on your Remicade influsions.
Just a quick note....I'm also allergic to dogs, and I have 4. And of course, I would NEVER get rid-of them. Have you tried the NETI POT??? Try it, it really works great!
I'd love to get another dog, but I've decided I'll do without for a while. I've seen the netty pots, but I'm trying saline nasal spray for now.
I saw my GI doctor Monday, and had my Remicade IV on Tuesday. I told the doctor on Monday that something has to change, since the Remicade I've decided tons of aches and pains... he still thinks that they are just a coincidence. He still says my aches and pains are the result of getting close to 40 and being 10 or so pounds heavier.
He had me go get blood drawn and wants me back in 2 weeks to discuss the findings. He wants me to continue Remicade.... I'd like to quit it, but I'll keep at it for a little while longer. For now, I'm keeping my colon and not needed surgery....I'd like to keep it that way, but I'd like to feel better too.
-Robert
How's the acupuncture working out for you?
I was considering acupuncture, I'm not worried about the needles, I've been stuck so many times this past year it doesn't bother me too much anymore. Can you relate the acupunture to any real relief?
-Robert