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yet another remicade question

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Posted 6/26/2015 12:43 PM (GMT 0)
I got my first remicade infusion yesterday and I don't feel any difference in symptoms. When I read the reviews for remicade, there seems to be only two types of reviews

1. "this changed my life OMG this is a wonder drug....worked right away" review
2. "This did nothing for me" review

There has to be people in the middle? I am curious if some people found that it took a few infusions to start working? I am feeling a little discouraged that I didn't fall into bucket 1.

When did everyone start seeing a change in symptoms? If it doesn't start working right away does that mean it probably never will?
Posted 6/26/2015 12:52 PM (GMT 0)
It's been one day, relax and give it some time. It's very common for it to take 2-3 doses before you start to see some improvement. Although you should feel someeee type of improvement after the second dose. Certainly it's not time yet to be discouraged about it not working, it's far too early for that. There is also a middle ground to this drug in my opinion. For some the effects wear off a couple weeks before their next infusion, but it greatly helps them for the 6 or so weeks after their infusion. Everyone is different with this drug just like everything else but just give it some time is all I can suggest.
Posted 6/26/2015 1:29 PM (GMT 0)

ElpisUnbreakable said...
I got my first remicade infusion yesterday and I don't feel any difference in symptoms. When I read the reviews for remicade, there seems to be only two types of reviews

1. "this changed my life OMG this is a wonder drug....worked right away" review
2. "This did nothing for me" review

There has to be people in the middle? I am curious if some people found that it took a few infusions to start working? I am feeling a little discouraged that I didn't fall into bucket 1.

When did everyone start seeing a change in symptoms? If it doesn't start working right away does that mean it probably never will?

I recently started Remicade and so far I would fit into the OMG this is a wonder drug category. But don't worry there are plenty of people out there who take time to respond. I've read reviews from people on Remicade that it took up the the third infusion for it to start working. But in your case if it has only been 24 hours that's hardly anything, there is plenty of time for you to see a response - its far too early to worry about it not working.
Posted 6/26/2015 1:49 PM (GMT 0)
Cavalier9
Thanks for the encouragement. I don't mean to sound so impatient but I heard so many stories about this drug being a wonder drug and working right away. Being the eternal optimist, I of course thought...well that's going to be me. :) I am going to try to chill.

Jonny_Murray
That is good to know that some people took the third infusion to feel better. I have not come across as many of those reviews. Can I ask how long it took for you to feel different?
Posted 6/26/2015 1:59 PM (GMT 0)
For me it did work right away that it brought my crp from 140 to 80
I also went from maybe 20 bloody mucousy completely loose BMs to 10 or 15 daily
But I was still pretty sick and had to stay in the hospital for a while it wasn't u till after my second loading dose that I could go home
I had my third a couple weeks ago and I am much better than I could have imagined before starting remicade
I am still having pain and can't eat normal food yet but I am hoping the fourth will do the trick
When I was getting it at the infusion center the nurse told me that it's after the fourth that she personally sees the biggest improvements with her patients
So I know it can be hard to wait especially when you feel so sick but hang in there it may take several days to several weeks but you can get better
Since its 24 hours you can't say you didn't respond
Give it 3-5 days if you haven't changed at all and your crp is still high... Than maybe you can explore the thought of it not being effective but now just try your best to rest up and get sleep so you can feel better
Posted 6/26/2015 2:38 PM (GMT 0)
Don't get discouraged yet, internal healing takes time. You'll know whether remicade works for you by the time you finish the initial loading doses (by week 6 or shortly thereafter).

Yes, there are three buckets for remicade. 60-64 percent of patients have a response to remicade.
1.) First bucket, 40-36 percent of patients have no response to remicade.
2.) Second bucket let's call them the omg it's a miracle drug crowd, of the 60-64 percent of patients who respond to remicade, 32-36 percent achieve remission within a year of starting remi.
3.)The third bucket is the remainder from #2, those who have an initial response to remicade but do not achieve remission from it. Remi makes notible improvements in your uc symptoms, you continue treatments, yet aren't in the fabled promised-land of remission.

I noticed my first positive response, a week after infusion #2. I noticed a much larger improvement a week after infusion #3, and slow and steady improvements until I achieved remission after a year.
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