HealingWell
Search Close Search
☰

GI wants to put me on Remicade for just 3 infusions and then start Imuran - anyone else just do 3

Support Forums
>
Ulcerative Colitis
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 11/9/2007 12:42 PM (GMT 0)

He told me that he wanted to just do the 3 infusions and then start the Imuran -

 

But I read that once you go off that some ( about 1/2 could not go back on)  -  I called and the makers of Remicade told me that the FDA

approved the drug for UC to be used as 1 dose - then 2 weeks later another dose - then 4 weeks after 2nd dose you have the 3rd dose - then you have a dose every 6 - 8 weeks after that.

 

I know that the Lialda I had a reaction to something in it - the Colozal and Asocal did not really do anything for me unless I was on Prednisone - then when I went off it I started to panic that the D would come back - even though I was still having mult. BM's per day

 

but should he not try the 6-mp or the other stuff you guys take -

or starting with trying Imuran first?

 

He said on the last colon scope I had one angry colon

I do want to get better!  BUT then I don't want to take the last drug that might help then go off it and then cant go back on it.

 

has anyone ever heard of just taking the 3 doses of Remicade?

Posted 11/9/2007 1:44 PM (GMT 0)
okiemom, I also just had three infusions...My doctor is trying real hard to get me off prednisone and he told me he just wanted me to do three infusions and then move to something else...He said that would be a whole lot quicker way to get me off the pred instead of using Imuran...I was having some side effects from the steroids that neither of us was too fond of...I have already had my three infusions over the months of Aug, Sept, and Oct...So it has been recently, and I have improved tremedously...I'm having no symptoms other than just some mild cramping after larger meals...I'm still on 10 mg of pred but hopefully be finished with that stuff soon...I go back to see my dr. on Monday (Nov. 12)...I'm curious to hear what he has for me next...

Posted 11/9/2007 2:29 PM (GMT 0)
I'm steroid dependent and my Gi wanted my on remicade because it works faster than imuran or 6mp. That cold be the reason he wants just 3 infusions...to get you to a point where imuran qill actually help. I've been on imuran for three months (my insurance wouldn't pay for the remicade) and have gotten no relief yet. If remicade could give you more immediate relief it may be worth it. Has he said why he didn't want you on it more permanently?
Posted 11/9/2007 2:38 PM (GMT 0)
He said that I had a very angry colon. He said that the Remicade would be like a jump start so the Imuran would work. The 3 most would be to avoid any long term bad side affects. ( that is what I understand at least.)

I know that I am in a flare - the smell - it is enough to............ well you guys know plus have D - I know it is bad this week even more because of surgery.

The Pred caused me to gain about 100 lbs, plus when I went off them the D came back - but I did not want to go back on them because I had gotten a staff infection
Posted 11/9/2007 4:54 PM (GMT 0)

okiemom - If your GI only wants you to have 3 infusions and then jump ship to Imuran, then you need to find another GI.  That is the most ridiculous thing I have ever heard. 

Remicade is not designed as a "3 infusion and then stop" drug. 

Firstly - Some people dont see any response to remicade until after the 4th or 5th infusion

Second - It is widely understood that if you go onto remicade and it works for you, and then you stop the infusions. If you at a later date go back onto them, chances are it wont work.  So you would be ruling out a possible future drug helping you get out of a flare

Third - You are supposed to start imuran several months BEFORE going onto remicade so that you lessen the risk of a reaction to the infusion and to prevent your body producing antibodies to the remicade.

Your GI does not know what he is talking about! 

Posted 11/9/2007 5:06 PM (GMT 0)
that is what I had read that once on you can not go off the remicade.

I wonder if I can ask for a consultation in the same office?
Posted 11/13/2007 1:54 PM (GMT 0)
Just wanting to know if anyone else had any thoughts on this.


When I asked GI he siad they were trying to not have people on Remicade so long
Posted 11/13/2007 2:40 PM (GMT 0)
okiemom, I was wondering yesterday if you were going to have just the three infusions...I went back to my GI yesterday and finally got to tell him everything was normal...I know there are some people that disagree with only having three infusions and then stopping it...To be honest, I didn't really give how many infusions any thought, but whether or not I wanted it at all after reading all the terrible side effects...As far as it not working in the future, who knows? Maybe by the time I need it again, they will have something else out, or maybe I want ever need it again...I just know, I needed a jumpstart and that worked for me...I have a wonderful doctor and he is sincere about helping me...I'm picky about my doctors and if I felt he was doing me wrong, I would be the first to tell him...I just wanted to let you know, I'm finally down to 5mg of pred after about 8 months of that drug...I hate it!!! Yes, it helped me, but the side effects are awful for me...Oh, and after the first infusion of remicade, i could see a huge difference...After the second, I was pretty much back to normal, and have been ever since...Who knows how long it will last?? I may regret our descision about the remicade later, but as of now, I'm doing great...Just a little encouragment if you go with the three infusions...I just know it worked for me, but maybe not everyone...

Posted 11/13/2007 3:02 PM (GMT 0)
BK1579

thanks for writing - did he say anything about the 3 infussions - the doctor did tell me that it was a way to jump start remission.

My GI's office called yesterday to see had thy Thyroid removal had went - that was great - allread looking like just a black mark on my neck - in just one week - and no radiation needed because the one they found was so small - the big one was just a tumor

BUT then Saturday I got the cellulites back in my left leg ( kinda like a staff infection - this time it wrapped all the way around the left leg -
even doctor said when are you going to catch a break

Anyway - I did ask him about just the 3 infussions and he said was more of the new procedure - so people are not long term on it with a higher chance of developing the worse side affects.

I have even though about asking DH if we could get PG - it all went away then - LOL but then after I had our son all heck broke lose - just joking we have to kids and that is plenty for us
Posted 11/13/2007 3:31 PM (GMT 0)
my GI had planned to put me on Remicade to end my flare while waiting for the Imuran to kick in, then stop the remicade. Maybe he just said 3 b/c he thought that would be all you would need and maybe he would give you more infusions if you needed it?

anyhow, either the pred or the hydrocortisone e's are helping me so I am not going to take remicade.
Posted 11/13/2007 4:48 PM (GMT 0)
I'm planning on staying on Remicade until it no longer works because it's awesome stuff. Personally, if I was going to stop the infusions, I would not do so until I was completely off prednisone and had been for a while without any problems. A lot of people don't have problems tapering until they get way down there.

 

Also, Immuran or Azathioprine doesn't work for everyone. I had to stop taking it due to massive migranes and it never even touched my flare. But once you take the Remicade card off the table you really don't have many options left.

Posted 11/13/2007 5:42 PM (GMT 0)
at the current time I am not on anything - they wanted me try the Colozal for the week before surgery but it seemed to make D worse.

I have not been on Pred in about 1 year, but when I cam off it, it was like I had to have it or I could not leave the house - probably sounds crazy

I was but on Xanax XR - that helps - but after surgery and now leg infection I was have bloody D and just plain mucus D

Scrap girl how long have you been on them? How long before you noticed a change. I am tired of not having a life. My daughter is in Cheer and I get sick stepping on the porch cuz I am afraid I will need to find the bathroom.
I just want a life.
Posted 11/13/2007 6:26 PM (GMT 0)
my doc doesn't take you off remi until it STOPS working. after a 12 week break from it you start developing antibodies to it and i t will no longer work. as for there being something else out there to help in the future there isn't a whole lot going on with research, about 3 studies and they take years to get approved--up to 10 years.
Posted 11/13/2007 8:43 PM (GMT 0)
Okiemom - I don't know if I understand. Are you flaring now? Most people try the Immuran and if that doesn't work, Remicade. You might have to go back on prednisone until the Immuran kicks in. You asked about my medication? I've been on Remicade since maybe June. I was on Azathioprine (generic Immuran) for about seven months but never got to a high enough dosage for it really to help me. The migranes kicked in when I went from 50 mg to 75 mg and I had to stop. I think I would have needed a much higher dose than that for it to help me. I would suggest a second opinion.
✚ New Topic ✚ Reply