Wow! Thanks for such a quick reply! She is not a fan of steriods, but will have it ordered to dispensed if needed during the infusion. She said we'd do the antihistamine and tylenol (which I have done before). I fully trust her instincts, but am nervous at the same time. I have had 2 resections (terminal ileum area) and this fistula is a new area for me! I also take imuran so hopefully, it will help suppress any reactions, too. I am waiting on insurance approval and just had my TB test today so the earliest I would start would be next week if things fall into place. It could be 2 weeks or longer if things move more slowly. I forgot to ask her what dosage she would be ordering. I started out with the regular dose and then it was doubled when I didn't have the results I was seeking. I am assuming I would start with the basic dose since I am not having severe symptoms at this point (compared to last time).
Were you nervous going in for that first infusion again? When do you start to show reactions? During the infusion process or later on at home? I really appreciate the time you are taking to answer these questions!
Thanks Lavender and Ivy!
I am a bit fuzzy today--had a seton placed and am still reeling from the anesthesia : )
I had a resection in 1991 --20 inches, slightly more small vs. large intestine and did well with no meds until about the 14th year. I was able to have two children and other than very quick transit of food, did okay. However, I ended up with kidney stones (due to absorption issues) as my main problem.
A few years ago, it all came back. I had fistulizing intestines and tons of inflammation with a pretty bad stricture. I did prednisone, which helped somewhat and then imuran, gradually upping it to my optimal dose. I did remicade for a year--basic dose for about 6 months or so and then they doubled it. I noticed a marked improvement on the doubled dose and not much of anything with the regular dose (I believe it was the 5mg.??), but still had scar tissue that the remicade could not touch. I tried a course of Humira as a last ditch effort before surgery. I didn't notice much of anything, but at the point I was really dealing with scar tissue so it is hard to say what the drug can truly do for me. To add to the complication, I had a kidney stone drop down into my right ureter--right underneath all of the intestinal inflammation mess and it damaged the ureter, causing my kidney to swell. So, last June I ended up with another resection (all but one inch was small intestine) AND a ureter resection. It was declared a success (9 days in the hospital) and I stayed on imuran (50 mg) as a maintenance drug. I did okay until about Feb. when I started having cramping, etc. My gastro put me on a course of antibiotics and upped the imuran. Then, low and behold, at the end of April--my fist abcess! It was drained by a colorectal surgeon and developed into a full-blown fistula. So, now I am waiting for approval (again) for remicade.
I love, love, love my gastro. She is the best in the area and she is determined to not let this disease take control again. If I can tolerate it, I think Remicade is a good place to start. It did help my fistulizing tracts of small intestines previously. . .don't know if it can help with the fistula I have now but I am hopeful. If I don't respond/become allergic, the plan is to move on to the other drugs. The infusion part is a drag- half day off of work at the least, but if it works . . .
My doctor's office is putting a rush on my approval, but it is hard to say how long it will take. She would like me to get in next week if possible. I'd like to get started because I am a teacher and would love to get this loading dose out of the way before summer is over.
Take care! I really appreciate your thoughts on this! It is a lot less scary when I can hear how others have dealt with it all.
After 3 and a half years on Remecade which was working fine(closed both my fistulas almost right away), I decided to try to go off it due to some of the side effects. I was having sever joint pain and swelling, headaches, erectile disfunction...the list goes on. Within a few months both(it's a horseshoe fistula, so it seems like two, but is one interconnected) came back with a vengance.Loaded up on Remecade and began regular schedule with a helping of cipro and flagyl thrown in, which by the way, I hate the two meds. Feel constantly sick and tired from them, yet have been on them for the better part of the last 8 yrs. It's a year later and only one side of the fistula has healed, and the other is still showing no signs of healing. The healed one feels as though it could come back at any given time and is allways tender and painful.Since restarting the Remecade, I have had several reactions, one of which landed me in the hospital as every joint in my body swelled up and I couldn't move for a few days. Since it seems that Remecade will no longer work for me, I will be starting Humira this comming July.