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remicade second time around

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Crohn's Disease
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Posted 9/7/2013 5:08 PM (GMT 0)
I was in remicade/infliximab about 2-3 years ago. My first GI took me off if it after 9 months because a had a hefty flare which left me hospitalised for 4 weeks.

my new gi tested me for antibodies (all neg) and After a flare this summer and seeing my disease had progressed despite the entocort and azathioprine we agreed to go back on the remicade.

Yesterday was my second infusion and I swear I never felt as crap after an infusion as I did yesterday. My veins throbbed for like 12 hours all my joints hurt my stomach hurt I generally felt wrong. Now I can deal with one day of that but my question is how long before I should expect to see the medicine kick in? I went in really positive expecting it to be like the first time and now I feel silly and deflated lol.

I'm still having bloody bms and feeling pretty poo but I don't wanna go back on steroids n not know if the remicade isn't working cos the steroids are masking it...

Has anyone else gone back onto remicade/infliximab? We're you successful?

Thanks
Posted 9/7/2013 5:27 PM (GMT 0)
Remicade worked well for my crohns but I was not able to tolerate it. I spent a month nearly passing out every day after my last infusion. It worked really fast though (I want to say it was a couple of days when it seemed to kick in) but I could just be remembering wrong. I have to say, it was definitely effective in my case. My body just couldn't handle it and the doctor said I had to come off (I think there are two types of reactions and I was having symptoms of the second type but again not sure----and he seemed alarmed enough that he wanted to stop).
Posted 9/7/2013 6:26 PM (GMT 0)
on one infusion after it, I felt like a train hit me. Completely exhausted, weak and limp, like I couldn't stand, but the next day I felt a lot better. I have had 6 infusions already. Every time I go for the infusions I literally feel the fight in my guts. I feel this swishing feel in my guts going back and forth, its insane never felt anything like it, its really weird.....
Posted 9/7/2013 6:40 PM (GMT 0)
I tolerated Remicade really well, none of the feeling like a trainwreck that other people have mentioned. On the downside, it didn't work for me. At all. So perhaps feeling crap afterwards is a sign that it's doing something.

That said, Remicade usually kicks in between the second and third infusion. So give it a bit longer, but if you are not feeling any better after the 3rd infusion, it is unlikely to ever kick in, tbh.
Posted 9/7/2013 6:51 PM (GMT 0)
Thanks guys. I just felt silly cos when I was on it two years ago I saw improvements almost immediately the worst affects after an infusion was that id sleep alot for about a week n id get a rash thatd last a week lol. I guess my brain was being so optimistic that itd work just the same just as fast and its not often im that positive lol I just feel deflated that it may not work the same!

It still might though might just take longer this time around. ... thats what im hoping anyway I have an appt with my GI at the end of this month before my next infusion so I will just keep a note of how I feel between now n then. If all I have to deal with is a couple of days feeling like this for 6-8 weeks of feeling good I can compromise and get the infusion on a friday lol

the things we'd put up with for some relief eh
Posted 9/11/2013 1:07 PM (GMT 0)
Just curious if you received the Prometheus antibody test or the anti-imfliximab Ab test from another source. I tried remicaide several years ago and the retried it earlier this year. I was told that I didn't have antibodies but I did not respond to remicaide. I switched gis and the Prometheus test showed I did have antibodies. My gi feels strongly about the Prometheus test only. I wish did not waste all that time on remicaide. Anyway every doc is different and I can't find any hard core proof of this just something to consider.
Posted 9/12/2013 2:36 AM (GMT 0)
Hey I did have the prometheus test and it was negative.
Only had two infusions so far but am not seeing any improvement yet...

I was hopeful but now not so much to the point I'm going to get bloods done tomorrow because I think I may be back tracking now im not on steroids. ...
Posted 9/12/2013 6:32 PM (GMT 0)
Maybe you should see if you are on a high enough dose...I think the max is 10mg per kg. I know how this discouraging this is. I was hoping remicaide would work like magic since it worked so fast the first time around but I have antibodies and you do not. That is really encouraging. The one thing I learned is not to stay quiet at doctor's appt. If you have no relief, you need to tell them. Maybe they can increase your dose, incr the freq of infusions or try something else. I wasted too much time "being patient" good luck!
Posted 9/12/2013 11:33 PM (GMT 0)
Yeah my bloods came back "ok" whatever that means lol doesnt always mean healthy just means my dr thinks I can wait till my appt lol!
I think I'll agree to a couple more infusions if that's his suggestion and if nothing improves my energy joints pain ob a whole im going to stop its way too expensive to take and not feel wonderful lol!

thanks for ur insight tho it a nice to see others have been in the same place!
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