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Azathioprine

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Ulcerative Colitis
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nakamura1967
Regular Member
Joined : May 2018
Posts : 162
Posted 5/3/2021 4:24 AM (GMT -6)
Hi fokes,

Just a bit of pre research, hopefully my son won’t require azathioprine however, does anyone have any positive/negative experience with it ?
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UCyousee
Regular Member
Joined : Feb 2014
Posts : 469
Posted 5/3/2021 5:52 AM (GMT -6)
Before going onto Azathioprine your son's TPMT enzyme levels would be checked to see how well he'd be able to process the Aza.

I think this is pretty key to whether someone does well on Azathioprine or not.

I have low TPMT levels so didn't process the Azathioprine well. I was switched to 6-MP but I had unpleasant side effects with that as well, so I wasn't on these drugs for too long before I switched to biologics.
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straydog
Forum Moderator
Joined : Feb 2003
Posts : 18879
Posted 5/3/2021 8:29 AM (GMT -6)
N, there has been some folks on here that has/had success with Aza, however, you have to keep in mind the location of the disease. Aza is a slow starter, it can take up to 3 months to become fully effective. My experience with it was while on Remicade & Humira. What orals has your son been tried on? I know the dr has been treating the lower end if I remember right.

Nothing wrong with having a backup plan.
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momto2boys
Veteran Member
Joined : Jun 2013
Posts : 2518
Posted 5/3/2021 8:37 AM (GMT -6)
Your son will absolutely need to have a TPMT to check and see if his body will process it at all. For some reason many doctor's skip this step and the medication will do nothing if your body cannot process it. It is slow working, 3 months is when you start to get a therapeutic level can take up to 6 months to fully work. I started it in January of 2019 and it has been working well for me. I did have some issues with nausea at first, but I found taking it with my last meal of the day helped with that. I haven't been scoped since I started taking it but my quality of life has improved.
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iPoop
Forum Moderator
Joined : Aug 2012
Posts : 16367
Posted 5/5/2021 12:44 PM (GMT -6)
I took 6MP for about 6 years, no major side effects or concerns here. Safety profile is similar to biologics, low risk long odds of major side effects. Few experiencing major side effects. It's immunosuppressive. Generally you're talking colds last a few days longer and have worse symptoms.

about 20 percent experience an initial nausea when starting it, it lasts a month or less then goes away (taking right before bed with a snack helps mitigate it some). Some have an allergic reaction which is extreme nausea and discontinuation is necessary.

He'll sunburn easier on azathiopurine. Just apply sunscreen if he's going to be outside all day.

There's some concern about azathiopurine and adolescent males regarding lymphomas. You're talking long odds (0.04 percent) versus 0.02 percent for the general population. I think the risk has more to do with maintenance usage over many decades. Sometimes it's just for a few years and then discontinued.
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UCinGV
Veteran Member
Joined : Mar 2007
Posts : 527
Posted 5/6/2021 2:16 PM (GMT -6)
I've been on it for 15 or so years, it greatly reduced the frequency of my flares and I haven't had one for 6-7 years now. It does make it harder to fight off infections, particularly when you've been on it as long term as I have.

UCyousee - just curious what exactly are the symptoms when you "didn't process" it well?
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UCyousee
Regular Member
Joined : Feb 2014
Posts : 469
Posted 5/6/2021 3:15 PM (GMT -6)

UCinGV said...
UCyousee - just curious what exactly are the symptoms when you "didn't process" it well?

Hmm I can't remember the specifics as I wasn't on Azathioprine for long due to the low TPMT levels - I'd have to look back on old letters to give an accurate answer of what led to the switch to 6-MP after a short period of time. It was probably blood test results and me feeling really unwell.

While on the 6-MP (mercaptopurine) I was pale, very tired, easily caught colds that would knock me out as though I had flu, and had a really horrible suppressed mood that I could tell was caused by the medication, and it didn't get me into remission. I generally felt pretty unwell while taking it (not due to the flare up - it was different - that horrible feeling of taking medication that makes you feel unwell).

In contrast I had very few problems with Humira. I remember that when I started on it my hair would fall out and regrow quite quickly which left me with fluffy baby hair at the front (I wasn't going bald although I remember worrying that's what was happening - it just seemed to be regenerating quicker), but I got loads of energy, and I haven't had problems with mood or lowered immunity.

Sadly Humira is no longer working for me so I'm back to the trial and error of switching drugs.

I do find it interesting that with UC what works for one person doesn't necessarily work for another.

Post Edited (UCyousee) : 5/6/2021 3:36:17 PM (GMT-6)

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