I think my Imuran has stopped working. Has this happened to anyone else?

[SickAndTired13]

Hello,

I am 27 years old and I was diagnosed with Crohn’s when I was 19. I was in the hospital for several months after first being diagnosed. I have been on Steroids (which I hate), Methotrexate, Asacol, and of course Imuran. I have been on the Imuran for over two years and I had a pretty bad flare in the beginning of this year. I am on 100mg daily and am no longer on the steroids. I noticed that as I started weaning myself off the steroids that some of my symptoms started coming back, but I thought nothing of it, until I started seeing blood again. I went to my GI and he thinks that Imuran is a great drug and that maybe my dose isn't strong enough. So, while I wait for blood tests to come back I am just getting sicker. I am thinking that the Imuran is no longer working. Has anyone experienced that? I am really getting worried and I am not sure what to do. Should I go back on the steroids? Should I demand that he puts me on something else?

Any advice or input would be greatly appreciated.

Thank you!

 

[hawkeye]

Might be that the Imuran dose needs to be increased or the steroids need to be continued or both. I have not experienced this with the Imuran but have had the issue wih symptoms cropping back up when I was tapering (when I was first diagnosed 22 years ago).

 

[Pointy_ears]

I had a similar issue with some of the symptoms coming back but it was minor things and mostly dietry related, but was then fine for three years till I had a massive flare up that required surgery. It may be you require a larger dose, your GI will know best! :-D try not to worry, I find my pain levels increase if I worry or get upset.

 

[randy.stand]

Yeah. I was diagnosed with Crohns when i was 13. I was put on Azathioprine together with Pentasa and it worked for me well. I was taken off the pentasa about 18 months ago and still suffered no symptoms. This year, in March, i had my first ever flare up. I was immediately put on a 9 week course of Pred but as i got down to 10mg-5mg a day i started flaring up again. So after about 2 weeks of them investigating whether i had infections or whatever ( i told them i hadn't), and some of these doctors think you just sit at home doing nothing, well reality is i had to continue to Nurse during my crohns flare up. Well finally, the results came back and hardly a surprise, i had no infection but had flared up again. Put back on another 6 week course of Pred which was later lowered to 4 weeks. I was also put back on Pentasa, two sachets a day. They couldn't up the Azathioprine because it was the therapeutic amount for my body. 150mg i'm on. So fearful i was going to flare as the Pred stopped again but i didn't. I've been off the Steroids now for almost 2 months and am okay at the moment. Started to have this weird thing that when i'm eating i feel full straight away but no diahrea or anything so its alright at the moment.

They think my flare up was caused by a Viral infection i had. Around the same time as my flare i was at university and felt awful. Couldn't breath well, dizzy, felt sick, temperature and i had to leave Uni for the day and spend it in bed. That's where my flare up started. Hopefully this remission lasts for a while again now but it can happen where Aza feels like its stopped working and then starts again.

All the best.

 

[mdstuart]

I have been on Aza for almost 2 years now. My GI explained to me that Aza can take MONTHS to start working, which is why many docs put you on a prednisone (or other steroid) taper in the beginning weeks of being on it. Aza has been linked with certain cancers (mainly leukemia) which is why you get routine blood counts. I am on 150mg daily, but that is a pretty conservative dose. Many people can tolerate higher doses, although it's usually 100-150mg that is prescribed to start. You should talk to your doctor about supplementing with prednisone during your flares. I am going through the same thing right now with Aza. I think it stopped working, but I might just need to increase the dose.

Good luck!

 

[Stupendamatic]

I was on imuran (1 1/2 tab a day 75mg) and colazal (3x3 a day) since I was diagnosed at 13. I was fine for a good 10+ years, just turned 26 and the last 2 years have been rough. I haven't had any flares that have put me in the hospital but I've had a lot of issues. Recently my doctor doubled my dosage for imuran, has me on canasa which I hate with a passion (been on for a year) and has me take metamucil. I still haven't improved to where I was before. I always feel like I'm around 75%.

He mentioned when talking about my imuran that since I am older now and heavier than when I was 13, the dosage should be increased. Ask your doctor, mine had said I could be taking 200mg a day but he wanted to just go with 150mg. I am usually around 185 but have lost 13 lbs recently since I've been having a lot of joint, and muscle pain/soreness on top of fatigue which hasn't allowed me to exercise.

Hope things work out better for you.