Posted 10/9/2010 5:31 PM (GMT 0)
I took my first dose of Remicade 9 days ago in order to heal my colon (hopefully in preparation of surgery down the road) after a really stubborn flare that landed me in the hospital for 14 days. Things went fine for the first 5 days and the Remicade cleared up my flare nicely. However around day 7, I slowly began to develop very painful side effects. It began as shooting pain down the left side of my body late one night. This cleared up during the day. The next night I had even more excruciating pain, this time in both of my knees. Last night the pain was even worse. It usually strikes between 2 a.m. and 8 a.m. and then resolves during the day only to come on again at night. This is no light pain either. I am talking about the kind of pain that makes one tremble and writhe around and cry with no position of comfort. It makes me unable to stand up on my own and my husband had to carry me downstairs this morning. Even two pills of Oxycodone doesn't make this pain go away. I have had kidney stones and broken bones and this pain is far worse. A 10++++ on my scale. The only thing that makes it go away is the time of day. By 8 a.m. it clears up. I am fearful of what each night will bring. I contacted my doctor and she said it was a side effect of the Remicade, but that it was normal and should get better. They want me to continue with my next infusion on Friday and then another in November. I am scared to death of what this drug is going to do to me if I put more of it in my body. I cannot believe this pain is something normal that people go through on this drug! It doesn't seem possible that anyone could tolerate this. I fear I am having some sort of unusual reaction. I am not sure I want to continue the drug, but then I don't know how to proceed as I am sure I will slip back into a flare and will not be able to wean off the Prednisone in order to get surgery. I have been told that they don't want to proceed with any surgery discussions until I heal a bit using the Remicade and get off steroids so my immune system is strong. I don't know what to do. I am afraid that if I take another dose of this medicine that it will make this pain worse, or that I may develop something even more debilitating. I plan on talking to my doctor about it again on Monday, but I feel they are going to keep using the phrase "this is normal" and that they will want me to continue on the drug. I don't know how to insist I take no more of this when it will put my possible surgery schedule in limbo. I am so scared and I don't know what to do.