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Might Start Imuran w/Remicade...

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Posted 5/9/2012 3:33 PM (GMT 0)
I'm about to give in and try Imuran with Remicade. Not for certain yet, but it's really my only option at this point.

My question is... have any of you either experienced or heard of someone that found remission through medications this serious, and then tapered off one of them to be safer in regards to lymphoma??
Posted 5/9/2012 3:43 PM (GMT 0)
Don't get your hopes up. Imuran doesn't work for me much, remicade doesn't work for me much. I think there's a limit where you have to draw the line in terms of how many toxic drugs you are willing to take to achieve remission or contemplate YREGRUS...
Posted 5/9/2012 3:48 PM (GMT 0)
I was on 6mp when I started on Remicade. I never achieved remission with 6mp alone but with the added Remi I am now in a pretty good remission :) I worry about the long term effect this could have but my GI wants me to remain on the 6mp with the Remi to help prevent building antibodies - I already had one serum reaction and I am one of those people that if it can happen, it will happen. I really don't like being on these medications but other than surgery, I really didn't have much choice :( I'm hoping that I may be able to get off Remi at some point in the future.
Posted 5/9/2012 3:52 PM (GMT 0)
Is there a reason you are thinking about starting both at the same time? Why not try one first to see how it works. I just spoke to my friend who has Crohns and he has been on 6mp for 14 years and doing fantastic. He was a young male when he started and this is considered a high risk group for lymphoma. It has been a great treatment for him.

Everyone finds a combo that works for them so continue the investigation and keep your hopes up.
Posted 5/9/2012 4:01 PM (GMT 0)
Red,

I wonder if it's not actually the remi that puts you in remission, not the combination.
Posted 5/9/2012 4:36 PM (GMT 0)
Manhattan Mama, I was on 6mp for 6+ years. I'm on Remicade now. So... I've tried one at a time.
Posted 5/9/2012 4:45 PM (GMT 0)
well, give it a try- I've been in "remission" on Imuran with Remicade, & now Imuran with Humira for a long tiem now. I use quotes on remission, because clinically, no- I'm nowhere near remission. But day-to-day, I'm good. I mean, last Friday I went out & had beer, 2 pieces of pizza & some fried calamari! And didn't have any issues the next day. Recently, my GI suggested I try to taper down Imuran- I dropped from 150mgs to 100mgs, & within 2-3 days experienced a huge increase in symptoms- tried to taper 3x, got the same results. So I'm back up to 150mgs. I don't know, I don't worry about the lymphoma risk too much... it's really, REALLY small. So Remciade alone isn't helping you much, or does your doc want you to try Imuran to prevent antibodies from forming? Looking at my signature, I've been on Imuran with a bioloigc for 5+ years now- I started Imuran about 6 months before I began Remicade.
Posted 5/9/2012 6:29 PM (GMT 0)
Hey,

I was actually put on both at the same time 4 years ago. I asked my doctor about the cancer risk, and while it is very real, it is also very very small.

You usually go on both so that you don't build antibodies against the Remicade, but I was actually on Remicade to put me into remission quickly, and then went off of it as soon as the 6mp/imuran kicked in. I had no problems coming off the Remicade and was able to maintain remission on 6mp/Imuran for a good year and a half. I then made the mistake of thinking I was completely fine, and went off the Imuran, but that's anothr story...

If you have any questions abouty experience let me know!
Posted 5/9/2012 6:58 PM (GMT 0)
I was on imuran for 6 months while also on remicade, it is supposed to help you not build up antibodies to it. I have been off imuran for 6 months now. Imuran alone did not help me.

best of luck!
Posted 5/9/2012 7:16 PM (GMT 0)
     I was on 6MP for seven years when my GI doctor decided to start me on Remicade.  The 6MP never did keep me in a long term remission.  However, he stopped the 6MP two weeks before my first dose of Remicade.  He said it was too risky being on both those drugs.  Remicade didn't work either.  I had a total colectomy with end ileo in June of 2010.  Best decision I ever made regarding my health.  My GI doctor was not pleased, but tough....he'll get over it.  OH,,,I also gave Humira a shot too, but no change after three months.  Off all that crap now.  I was 63 when I had the operation. I'll be 66 in August, if God spares me and I only take one pill a day and that is for my BP.  Before my operation I took anywhere from 17 to 25 pills daily plus rectal meds....ugh rolleyes !
Posted 5/10/2012 2:48 AM (GMT 0)
My GI told me that if you stop Remicade there is a greater possibility of it not working in the future. He suggests that once you find something that works---stay on it.

Have you seen any difference since you started Remi in January? Is this the reason he suggests adding 6mp?
Posted 5/10/2012 3:08 AM (GMT 0)
I haven't seen enough improvement with the Remicade to give me my quality of life back, if that makes sense. Things have improved from a strictly analytical view, but I still have symptoms.

I'm going to give this decision more time. It's difficult. I know people personally that are on both, and then others such as on this site write that their doctors are even afraid of the combination.

Thankfully I'm taking this all in stride and just doing the best I can. Can't do any better than that! :)
Posted 5/10/2012 7:29 PM (GMT 0)
took me about 8 months to get into full remission w/remi, 5 steps forward, 3 steps back. Good luck.
Posted 5/11/2012 3:14 AM (GMT 0)
Thanks Beth. That is really good to hear. Congrats on the remission!
Posted 5/11/2012 11:38 AM (GMT 0)
http://journals.lww.com/jpgn/Abstract/2007/02000/Hepatosplenic_T_Cell_Lymphoma_Associated_With.19.aspx

http://onlinelibrary.wiley.com/doi/10.1002/ibd.20169/full


HSTCL is exceedingly rare. According to the article from 2007:


"The association of HSTCL in IBD patients is noteworthy. Data from the manufacturer received through voluntary reporting suggests that the incidence of HSTCL may be in the range of 8/10,000 or 8 cases in about 7 years."


8 CASES IN 7 YEARS- higher than the general population but, come on. Given how many people take these meds together, this is hardly worth worrying about. I am way more concerned about getting colon cancer from uncontrolled inflammation from UC.
Posted 5/13/2012 10:04 AM (GMT 0)
My son took imuran until it reached maximum levels with ciclosporin then he came off the ciclosporin and the UC hit him really badly again just on imuran - in hospital for 2 weeks, 3 units of blood and crp of 300! So he took remicade - for the first 2 infusions he continued with the imuran and he was really good - near normal. Then his consultant took him off the imuran because of worries about taking the two drugs together and the odds being higher for young men to get something like lymphoma. As the imuran left his system the remicade didnt work as well. He has now had his 3rd infusion and although he is well in himself he has about 6/8 BMs per day. We are watching and hoping nothing gets worse. Has anyone else seen improvements from a situation like this taking remicade for longer?
Posted 5/13/2012 12:28 PM (GMT 0)
I've been on Imuran for almost 7 years. Remicade since the end of November. My GI said after a year we could look at stopping the Imuran. We went over all the cancer numbers. They are really not that much higher than the general population.
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