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Azathioprine

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Ulcerative Colitis
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Posted 2/15/2024 8:16 PM (GMT 0)
Anyone have any experience with taking Azathioprine?

Long story short.. stool test on nov came back no inflammation. I was told once again to come off the rectal meds as the sulofalk in every form doesn’t agree with me (latest one I tried was the foam enema which I mentioned previously)
I told them I would flare within a few weeks if only on oral meds - they didn’t listen. Sure enough 7weeks later ALoT of blood

Went straight back in Budenofalk foam and upped Pentasa granules to 4g.

Asked what a long term solution would be as I can’t stay on the Budenofalk due to it being a steroid - was told I couldn’t be flaring as the last tests came back fine, so I demanded to redo the tests.

6 weeks into the Budenofalk still bleeding, not as bad but I can see it’s gradually getting worse again.

Results today said all bloods were fine. Stool sample was 787 (was told 30 is a normal level)

Have been told the only option for me is to go on Azathioprine. Seems abit extreme to me as my only symptoms are blood and constipation and the inflammation is only in the rectum.

Have been told to read through side effects etc and they will contact me next week. I don’t know what the right move is. Obviously want to avoid these flares but the side effects etc I’ve been reading don’t sound great
Posted 2/15/2024 9:35 PM (GMT 0)
I have been taking Aza since January of 2019. Before starting it I had a blood test, TPMT, to see if my body would metabolize thiopurines well or not as not everyone does. It is very slow to work, it takes up to 6 months to work fully, but I was lucky to respond well. I don't have a lot of inflammation, just 27 cm, but I was bleeding heavily and nothing was working anymore. I just had a scope in January that was totally clear, full endoscopic remission, biopsies showed no evidence of UC which is great news. Standard dose is 1.5-2 mg/k for UC.
Happy to answer any other questions you might have!
Posted 2/16/2024 1:40 AM (GMT 0)
I've been on azathioprine for ~20 years. Even after colectomy because I started flaring after. Blood work is being checked regularly.
Posted 2/16/2024 6:28 PM (GMT 0)
Is aza the same as imuran? I took imuran for 8 years but 6mp for maybe 2 years. 6mp caused liver issues but imuran never gave me any side effects at all.
Posted 2/16/2024 6:39 PM (GMT 0)
Yup, Aza is Imuran! I get bloodwork every 3 months to make sure liver function is good.
Posted 2/16/2024 9:21 PM (GMT 0)
Thanks mom! I cannot remember all the scientific names versus brand names. I also got bloodwork on imuran and 6mp pretty regularly. I had to stop imuran in 2020 because I got MRSA and could not kick it at all being on both Simponi and imuran. I had to do 5 rounds of antibiotics. I never started back on it because I got long haul covid and then tonsilitis for 8 weeks. That year was so bad but I would still take that over my 2023 flare! I dont do well on too much immune suppression.
Posted 2/17/2024 3:49 AM (GMT 0)
Jessxxx-- you did the right thing, advocating for yourself! I'm sorry to read that the gastroenterology consultants keep telling you that it's ok to go off rectal meds although you flare again whenever you take that advice. Ulcerative proctitis can be very stubborn to treat; another forum member here, Conquer UC, has been posting about that recently. SO, it does seem that your consultants are FINALLY paying attention to your need for additional medication in bringing up Azathioprine, and Momto2boys is telling you that a test can determine whether or not your body would likely respond successfully to it. That sounds like moves in a potentially helpful direction for you to consider and discuss with your consultants the next time you make contact with them. Wishing you good luck toward a solution that will get you to remission long-term with the least side effects. Take care and hang in there! *** I hope that Quincy will comment here, too-- as she understood your past history with the consultants very well. / Old Hat (40+ yrs with left-sided UC; in remission taking Colazal)
Posted 2/19/2024 12:11 AM (GMT 0)
I took 6 mp, 75 mg for 10 years and was in full remission on it. You start seeing improvement in few months but it gets better each day so don't get discourage, if you still have some symptoms after 3 or 6 months. You need TPMT test before you start to see if you are good candidate. And after 6 months if you still experiencing symptoms, they can check levels of 6 MP in your blood with 6-TGN and 6-MMP test.
In my case when I had bleeding in 2021, my doctor was thinking to increase dose and he checked 6TGN and 6MMP and they were extremely high. So that means I have enough medicine in my blood but it's not keeping me in remission. I stopped and was fine for few months after stopping(assuming what ever was in my blood was keeping me in that state(bleeding but not other symptoms).
1. Get TPMT test before starting
2. Get regular liver function and Complete blood count ( I also got C-reactive test) initially weekly until you reach optimal dose( they may start with small does of 50 mg or 25 mg and slowly increase it if your blood report are clear) and then every 3 months until you are on 6mp
3. If you still don't see improvement check 6TG and 6MMP test.
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