When Am I Cured?

[ThePear]

So does anyone know when this magical elixir they call Remicade starts to work? It's currently Nov 5. I had my first infusion in hospital on Oct 3 and my second on Oct 17. I'll have my third on Nov 14 (next week.) and then ongoing every 8 weeks thereafter. Reason I'm asking is because when I was in the hospital for ten days they put me on Prednisone, Cypro, and Flagyl and I've also been taking Imuran for a few months. I was feeling pretty good before my first infusion and felt fine afterwards. But about two weeks ago I stopped taking the Cypro and Flagyl and noticed just in the past couple of days that there's a bit of pain (nothing terrible, much better than it was before) but I also started getting these boomer headaches. Headaches typically present themselves just before I'm about to get a flare. I think it has to do with the infection from my fistulas. Anyway, I just want to know how long does it take for Remicade to close up the fistulas, kill the infections, eliminate the inflammation, and make me feel normal again?

Sorry to be all over the place. I'm just so disappointed that I don't feel as good as everyone told me I would. And by everyone, I mean the doctors, the representatives from the company that makes Remicade, and the representatives from the company that sells Remicade to me. Remicade is my "last resort" drug before my doctor starts to talk surgery. I want this to work. I need this to work. I want to be realistic and give it the time it needs to work, but at what point should I give up and just accept the fact that it's not working?

FYI, I've been paying very close attention to the pain I feel in my gut and also to my bathroom visits. I'm not going any more or less than I was before, BUTT (har har, pun intended) my BMs are a lot more normal and there is NO mucous or blood. So I take that as a good sign. What other "signs" should I be watching for that would tell me that the Remicade is either working or not working?

Really appreciate any feedback you Remicade veterans can give me. :sign0085:

 

[Clash]

Sorry to hear you are still having issues. It takes longer for some than others to respond to Remicade. I found this in a great article David paraphrased for the forum:

For Remicade, some suggest the full induction dose then, at the 6 week dose, double the dose before determining non-response.

but you need to put it in context and read the whole article(since there are primary non-responders and secondary non-responders to biologics) here is a link to that:

http://www.crohnsforum.com/showthread.php?t=42119

My son responded right away from the first loading dose, and it was awesome but when he moved to the 8 week schedule he couldn't make it the full 8 weeks without symptoms starting back up. He was tested for antibodies, it was negative and they ran a remicade levels test. They shortened his schedule to 6 weeks, then upped the dose. Finally, we had to add Methotrexate to the mix to get the full benefit and working toward remission. After 9 months of the combo his fecal calprotectin level came back as 48(<50 is normal). At it's highest his fecal calprotectin was 1700 that was when we added the methotrexate.

I hope that Remicade works out for you and you can soon find remission.

 

[lgpcarter]

My first Remicade dose was a looong time ago, but I think I felt better by the time I was done the loading doses. I also noticed improvement in my fistulas but they took a longer time to heal. Depends what shape your guts were in when you started. You may also need your doses closer together than 8 weeks. I did 6.

I think the consistency of your stool is a good sign that it is doing something. They might do blood work to check for response, or just rely on your symptoms improving. They may do a scope to see if your intestines are healing.

 

[afidz]

Just have to give it time. It takes a while to build up in your system and be effective.
The fact that your stools are improving is a great sign, don't give up or get discouraged. Just keep powering through