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Can anyone on Imuran help me?
- Thread starter sue85
- Start date
Hi sue, the side effects listed can be scary but keep in mind they are potential side effects, meaning there is a chance you might get them, but with careful monitoring if you do get any you can rectify the problem before it gets out of hand. Untreated crohns is far scarier in my opinion. Imuran has made me feel normal again
I agree with Joshuaaa. Imuran has worked wonders on me before when flaring, got me in remission faster than any other med such as prednisone, flagyl, etc. And it was a good, strong remission. I remember freaking out on the possible side effects the first time I took it. My daughter was 2, always bringing home germs, and I have always worked with the public, so the thought of lowering my immunity like that was so scary. But I did fine then, and a year ago on it as well.
Biologics like Remicade can have even worse side effects than azathroprine (Imuran) and I would still use it in a heart beat if aza wouldn't work on me.
The chance of serious side effects with aza are like 5 to 10,000 or so. And you do the regular blood test to really avoid any harm to your liver etc.
The question to ask is actually not so much "do the side effects of imuran outweight its use" but "should I go for a combination therapy of imuran AND biologics"? This depends on what symptoms you have and what history with Crohn's. However, while imuran gets people into remission in about 1/3rd of the cases long-term, a combination therapy does it for 57% of the patients. Here is a good article on this question http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3380260/ (note, the whole question about which strategy to use for Crohn's is still discussed and combination therapy has only gone mainstream recently - before you would normally put people on aza and then see what happens).
Anyway, don't worry so much about the side effects, there are things we do in life (some people smoke, drink heavily, drive without a seatbelt on, eat badly, don't do sport etc.) which have far higher chances of negative side effects than long-term use of imuran and/or biologics.
The chance of serious side effects with aza are like 5 to 10,000 or so. And you do the regular blood test to really avoid any harm to your liver etc.
The question to ask is actually not so much "do the side effects of imuran outweight its use" but "should I go for a combination therapy of imuran AND biologics"? This depends on what symptoms you have and what history with Crohn's. However, while imuran gets people into remission in about 1/3rd of the cases long-term, a combination therapy does it for 57% of the patients. Here is a good article on this question http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3380260/ (note, the whole question about which strategy to use for Crohn's is still discussed and combination therapy has only gone mainstream recently - before you would normally put people on aza and then see what happens).
Anyway, don't worry so much about the side effects, there are things we do in life (some people smoke, drink heavily, drive without a seatbelt on, eat badly, don't do sport etc.) which have far higher chances of negative side effects than long-term use of imuran and/or biologics.
Jim (POPS)
Jim (Pops)
- Location
- Antioch, Ca
Hi Sue,
I felt just like you do about Imuran 3 1/2 months ago when I first started taking it. I would stay away from people, not shake there hand and what not. WELL, I don't feel like that as much at all now. I think it is normal to think that way.
Now that I'm starting to see what Imuran CAN do for my body I am very pleased. After just 2 months of taking it I started to get somewhat of a normal stool and after 3 months I started to have pretty much normal stools and only go one, sometimes two times a day. . Before I was going about 5-8 times throughout the day and it was ALL "D".
If we don't treat the crohns, like I did, (had 3 resections in one year) we are far better off ON the Imuran that not taking it. You will do just fine. As time goes on you will not worry about it and you will get well. I say GO FOR IT.
Jim (Pops)
I felt just like you do about Imuran 3 1/2 months ago when I first started taking it. I would stay away from people, not shake there hand and what not. WELL, I don't feel like that as much at all now. I think it is normal to think that way.
Now that I'm starting to see what Imuran CAN do for my body I am very pleased. After just 2 months of taking it I started to get somewhat of a normal stool and after 3 months I started to have pretty much normal stools and only go one, sometimes two times a day. . Before I was going about 5-8 times throughout the day and it was ALL "D".
If we don't treat the crohns, like I did, (had 3 resections in one year) we are far better off ON the Imuran that not taking it. You will do just fine. As time goes on you will not worry about it and you will get well. I say GO FOR IT.
Jim (Pops)
I can sign up to that too. Actually, as paradox as it sounds, on azathioprine I have had hardly any infections, colds or viruses at all. The last sick day I took was in February 2012... and it related to Crohn's not an infection!
I had a negative experience with Imuran, but I would not tell someone not to try it. MANY people have done well with Imuran. Just because it did not work for you, does not mean it won't work for someone else.
Sorry I did not to mean to send the wrong message. I am well aware that it has helped many people. I guess I cut my post too short.
I have been on it for 4+ years now, aswell as azathriaprine, and I can honestly say, my life is so much better for being on those two drugs.
my crohn's is pretty bad and I have multiple fistulas and strictures in my bowl, and after starting on imuran my bowl health and stools got quite a bit better, after being on azathriaprine as well as imuran, it has got a whole lot better, I no longer get pains every time I eat something, I no longer have to rush to the toilet (or dont make it in time), I no longer have liquid stools and when I go to the toilet or break wind, it does not smell like a sewage plant has backed up either.
would not be without the two drugs now.
I know about the side effects and the fact that you can catch anything that is transferable between people, but at the end of the day, if I know anyone has something that I could catch, I do not be around them for at least 2-3 days after they are well.
I have not even had a cold or anything in the whole time I have been on these drugs, and my mum and my dad have had the norovirus(if you know what that is, Im in the UK btw) and I live with them and have not caught it off them sitting in the same room as them fairly close, so the immunity lose side of things isnt as bad as you might think.
EDIT: I ment Imuran and Infliximab not the other two, in the UK they name things differently to the US
my crohn's is pretty bad and I have multiple fistulas and strictures in my bowl, and after starting on imuran my bowl health and stools got quite a bit better, after being on azathriaprine as well as imuran, it has got a whole lot better, I no longer get pains every time I eat something, I no longer have to rush to the toilet (or dont make it in time), I no longer have liquid stools and when I go to the toilet or break wind, it does not smell like a sewage plant has backed up either.
would not be without the two drugs now.
I know about the side effects and the fact that you can catch anything that is transferable between people, but at the end of the day, if I know anyone has something that I could catch, I do not be around them for at least 2-3 days after they are well.
I have not even had a cold or anything in the whole time I have been on these drugs, and my mum and my dad have had the norovirus(if you know what that is, Im in the UK btw) and I live with them and have not caught it off them sitting in the same room as them fairly close, so the immunity lose side of things isnt as bad as you might think.
EDIT: I ment Imuran and Infliximab not the other two, in the UK they name things differently to the US
YES! I completely agree with this. I would add that uncontrolled, or poorly controlled, Crohn's would be far riskier than taking Imuran or the biologics.
My son has been on Imuran for a year now and has had no side effects.
Hannah, sorry it did not help you in your long term management. Aza for many years did not put me into full remission. You need to have the right dosage and even then it is just a piece of the puzzle. May I ask, how long did you take it and did you stop because of side effects?
Cheers,
A
Hello, I just got out of the Hospital after a week shy of 6months. The last couple of months I was put on Imuran because I had to wait for the other biologics. I started at 50 ml then two weeks later up to 150ml. My side effects started mild but progressively got worse. They were extreme body pain, nausea, fatigue and hair loss. My Dr put it down to 100ml. But it didn't help. I finally went home with iv gravol and sub Q dilaudid. And was told to stop taking it two days ago. Sooo in two days I go to a GI to be put on either Humira or Remicade. I'm terrified of those side effects also. FYI I have fistula Crohns. And I'm very sick. Any help would be appreciated
Susan
Susan
Susan,
I am sorry that Imuran did not work out for you but I really hope that one of the biologics can help you. I hope you don't have side effects so it would be good for you to try not to worry. I haven't personally used it but I heard that Remicade is great for healing fistulas, so that might be a good choice for you.
I am sorry that Imuran did not work out for you but I really hope that one of the biologics can help you. I hope you don't have side effects so it would be good for you to try not to worry. I haven't personally used it but I heard that Remicade is great for healing fistulas, so that might be a good choice for you.