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Remicade, how long is too long?

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Crohn's Disease
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Posted 1/28/2009 8:39 PM (GMT 0)
Sorry if this has been asked before, but I am just wondering what the longest time is anyone has been on it till it has started working? I've had 3 infusions now and it's not working, but I don't know how long I should wait before I give in and admit it's not going to work. I was on it before, but I really can't remember how long it took to work, I just know it did eventually because I was in remission for 3 years.

I know some people notice a difference after just one infusion, but I don't seem to feel any different after I've had mine.

Got my next one on Monday and really hoping I see some marked improvement this time, even if it's only slight. Would give me some hope. I get it every 8 weeks at the moment, but they are considering upping it to every 6 weeks and then doubling the dose if it doesn't work.
Posted 1/28/2009 9:55 PM (GMT 0)
I hope you get some good responses. Just wanted to chime in that I am sort of wondering what to do too- it seems to take a few days to have any effect on me, seems to then have a fairly pronounced good effect for a week or so at best and then little to no effect.... not exactly stellar for something that costs a ton and is supposed to last for two months. I've had four infusions and they are likewise still mulling over whether to decrease the intervals, increase the dosages, or both. Hope we both get relief soon.
Posted 1/28/2009 10:44 PM (GMT 0)
The only reason I am still hopeful of it working is because it worked for me before, but I know that it may not work a second time, I'm just grateful that I haven't had any adverse affects to it so far after not having taken it for so long.

I hope you get some more relief from it, and will let you know how mine goes on Monday if I feel any better after it.
Posted 1/29/2009 12:27 AM (GMT 0)
Hi: thanks for asking this question too. I am going for my second infusion tomorrow. I haven't seen any improvement although I've only had one infusion. I was on Humira for eight months, kept thinking it was working, but it really didn't do anything. This is one of my last options too. I've basically been flaring for about 4 years now and nothing seems to work. Please keep me posted on how both of you do. I will too!
Posted 1/29/2009 2:19 AM (GMT 0)
I tried Humira for a couple of months but just got worse on it, and developed an infection and was constantly having chills and a high temperature then it I couldn't keep anything down so had to go into hospital for 16 days where I went on Pred again. That made me feel abit better but as soon as I got down to 10mg of pred I started getting worse again. Had to come off the humira, but not sure I gave it much of a chance to work. I would like to try it again if the Remicade doesn't work, but whether my consultant will let me is another matter.

Hope you get some relief from the Remicade Dietcoke, it was a godsend for me the first time, the only thing thats put me in remission in years. I'm just annoyed that they took me off it when it was working so well, but tbh it might have stopped working by now anyway. But then again, it might not.
Posted 1/29/2009 5:57 AM (GMT 0)
I was on Remicade for about 14-15 months and I had absolutely no changes to my condition.  I eventually decided on surgery and my GI kept up the remicade (one more infusion) until my surgery date, saying she didn't want to drastically change anything just before surgery. 
Posted 1/29/2009 9:32 PM (GMT 0)
i had the 3 loading doses and it still wasn't working..it wasn't until my 4th or 5th that i really thought it started to work...i just had my 6th one last week and feel almost pretty normal..
Posted 1/29/2009 10:38 PM (GMT 0)
ImAud, that's reassuring to hear that it wasn't till your 4th or 5th that you saw any improvement. Means I still have hope.

78SilvAnniv, Sorry you didn't get any relief from it.
Posted 2/2/2009 7:11 PM (GMT 0)
Well I had my 4th infusion today, it went well, no reactions.

Went straight into town shopping afterwards for 4 hours and only had to visit the toilet twice. Was feeling pretty well, but could be because I had hydrocortisone as well ;)


I'll keep you updated with how I feel, and if I'm getting any better from it.
Posted 2/2/2009 9:35 PM (GMT 0)
I had my second infusion on 1/29. Still no change for me unfortunately. Keep me updated on your progress.
Posted 2/2/2009 10:07 PM (GMT 0)
It took me 3 to 4 time before it worked for me. Been on it for 5 years it doesn't make me 100% well id probably say more like 65% to 70% better. It still better than 0.. My quality of life is still better then before i had it. yeah
Posted 2/5/2009 2:27 AM (GMT 0)
Have you noticed any change yet Dietcoke?

Glad your quality of life is better now than before the remicade Erik45.

I'm not really seeing any difference yet.

Wondering whether the weakness in my legs is from the steroids or the Remicade now though, after reading one of the links posted on remicade, and don't know whether to bother my doctor with something else, don't want him thinking I'm a hypochondriac or he'll just get bored of me and not want to help me when I really am ill.

My legs went from under me when I stepped down from a chair earlier and I ended up on the floor. I was dusting. Plus they felt like they were going to do it again when I was coming down the stairs. I've had this with the steroids though before, when I've not been on Remicade, so I'm thinking it's probably from them rather than the Remicade. I hope so anyway, although neither is particularly good.
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