More questions about Imuran

Hey everyone! I hope all are doing well (or at least on the road to doing well). I read through the previous post I saw about Imuran, but I have some additional questions that I'm hoping someone can help me out with. I've researched a bit online, of course, but these questions don't seem to be covered.

First, I'm about to increase my dose of imuran to 150 mg. I have not experienced any hair loss yet (I started at 50 mg back in june, then after a month or so increased to 100mg, which I've remained on), and I'm wondering if this side effect is more likely to occur once I increase my dose, and if it can pop up at any time? Or is it not likely, since I've been on it a while, and not had this side effect yet?

Second, how does treatment/dosing work with this drug? Will I remain on 150mg permanently, or will it be decreased at some point to a "maintenance" or lowest effective dose?

Third, I know this is a long term drug. But I was reading in the other Imuran post that the doctor planned on keeping that person on it for 5 years. What happened after that point? Do they attempt to take you off meds completely, or switch to something else? And what is the "something else" likely to be?

For those of you that were once on Imuran, what are you using now?

I think those are all my questions, but I may have more that pop up

Thanks for reading, and for any help! :-D

Yeah, I did read that. Sorry that you ended up not tolerating it. I hope I have better luck. Who knows, maybe 5 years from now, though, they might have something better available. Here's to wishful thinking!

hey,

I was put onto Imuran 6 years ago, because i kept yo-yo-ing back and forth on pred and couldnt get stable. It changed my life, and got me into remission for longer and longer periods of time. I still get around 3 flare ups a year and a few grumbles but nothing compared to what i used to get.

I hardly ever get put on oral pred now and can manage my disease alot better. I only used to get hair loss when i was on oral pred at the same time, and it was kinda like thinning hair, never came out in clumps.

I have been on it longer than usual, they dont like to keep you on it for longer than 5 years, but there was really nothing else around that i could switch to without knowing if there would be problems and i was heading to New Zealand for a year, so my Gastro was talking about weaning me off when i get back early 2010.

However, i have ended up being in the health system in NZ as i got a flare which needed treatment at the ER, and they tested my blood for a 6-TGN level which determines how the body is metabolising the Imuran, and my levels were sky high, i am waiting on the repeat test to see where we go from here, it means that the Imuran is building up in my bone marrow and beginning to alter its protection, making me too immunosupressed, and also building up in the liver.

I think its because i have been on it so long but so scared of coming off as its been the only thing that has saved me from having a colostomy. Dont get back to the UK til Dec so hope i can hold off coming off it til then.

But yeah i worked up to 150mg pretty quickly when i started and have been at that dose since then, which is the maximum.

hope this helps and doesnt freak you out too much! But i still dont regret going on it, it was the best thing to do , and if it gives you a break then great.

let us know how you get on,
yvonne x

I've been on Imuran (125mg) since '90. It has helped to keep me in remission. I have had no problems tolerating it and all of my blood levels remain good. I'd be interesting in the article you've read or information you have about only staying on it for 5 years.

I was only on imuran for less than a year and was switched to remicade because imuran wasnt working as well as my Dr would have liked.

I'm still not sure of the ins and outs of the whole coming off the imuran thing, i think if my levels are high (i've been asking the odd doctor at work but i work in NICU so they are more accustomed to babies) but if they are super high they will have to take me completely off them, if they are slightly elevated then i think they will taper it a bit. As for the whole 5 year thing its something i have always believed was protocol in the UK anyway, everything i have read suggests 3-5years of treatment, and suggests reduced effectiveness after that time, and can accumulate and become toxic.
nasty stuff when it wants to be!

Thanks for the replies, everyone.

Gibby- Thanks, that was a lot of info! I'm glad that it helped you out so much, but sorry to hear that it may be having some negative tolls I hope that you can find something else that works for you. I finally went up to 150mg yesterday, so, we'll see how it goes.

Crohnsproof- holy cow, that's a long time! I'm glad it's worked so well for you, and it makes me hopeful that it will work that long for me! Thanks for sharing

Imuran has been very good to me. It's the only Crohn's drug that I take. The 1 mg prednisone is for joint pain, Prevacid for acid control. I have been blessed beyond measure the past 30 years.

It seems so! Congrats, and hopefully we'll all catch a bit of good luck