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Azathioprine good or bad?

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Ulcerative Colitis
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Posted 9/11/2014 6:12 AM (GMT 0)
Hello,

I have UC and for the last few months I have been having a bad run of flare ups and now my specialist wants to put on Azathioprine. I currently take Pentasa-messalazine 500mg tables 8 per day and have been on these for the last 13 years with very little trouble from my colitis.

I am not that keen to start taking Azathioprine after reading about some of the nasty side effects and how it lowers your immune system making you more at risk to infections.

I am interested in hearing from anyone here current taking it and if so has it worked for you and stopped your flare ups and have you had any side effects or health problems from taking it?

Cheers
Posted 9/11/2014 7:03 AM (GMT 0)
I am on aza too but only since June and it is yet to do anything for me. I also had hesitations in taking it but my GI doc said that any noticeable side effects would be immediate and that he has never known any of his patients to have any long term side effects. I was also on asacol for years with no problem but then after birth of my baby I've pretty much been flaring constantly.

I have not experienced any side effects on it but also don't know if it is working as I still am experiencing symptoms. I think it effects are very gradual though.

The only way to know is to try. If it doesn't agree with you you can come off it. And they do regular blood tests to check all is well on the drug.
Posted 9/11/2014 7:23 AM (GMT 0)
I too was scared before starting azathioprine, but if you're weighing up the pros and cons, it's much more dangerous to stay flaring than go on this drug. However I do wonder if you can simply treat your flare with some rectal meds and steroids before moving up the medicine ladder, seeing as your colitis hasn't troubled you much in many years.

If you do have to go on it, then the reduced immune system can be a problem. And I myself have developed several chest and mouth infections, as well as shingles. But I'd gladly go through these things rather than a flare.
Posted 9/11/2014 8:31 AM (GMT 0)
Thanks for the replies I will try it out and see what happens. He did say it will take about 3 months before it starts working as it has to build up in your system first.
Posted 9/11/2014 10:57 AM (GMT 0)
I have spoken with many people who have had no side effects and have not been ill any more than normal. In fact many said that because they were healthier and got ill less frequently because their general health and well-being was better.
Posted 9/11/2014 11:55 AM (GMT 0)
I've been on aza for over 2yrs with no problems. It took me about 6 months to with up the pros and cons before I decided to take it.

I'm glad that I did. It kept me in remission for a year and a half. I did suffer with a few side effects when I first start taking it, but this soon eased.

I was also worried about catching every bug going, but I can't say I've noticed this happening.
Posted 9/11/2014 1:00 PM (GMT 0)
I started 6mp about three years ago now, 50 mg. I think I've had one sinus infection since starting, untreated. Haven't had an appointment with my primary care physician during that time span for any reason.
Posted 9/11/2014 3:11 PM (GMT 0)
I am on 6mp for a year. When I started, I was in bad flare for about a year. Colonoscopy showed pancolitis(up to traverse colon) and was on prednisone for long time. I kept taking prednisone with 6mp for few months and I saw symptomatic improvement in couple of months and was able to get off prednisone completely.

I am still not 100%. Recent colonoscopy showed most colon has healed just some scattered spots in decending colon left and I see blood on and off.

So I think it has helped lot.Just get TPMT test before you start. That will tell you that it will work for you or not. Once you are on 6mp get CBC and liver function regularly. After few months if it still does not help get metabolic blood test. You may not have theraputic does and your GI can increase dose based on that test. Hope it gives you long remmission.
Posted 9/11/2014 6:39 PM (GMT 0)
Question on these drugs:

Do you always want to reach the "theraputic" dosage or can the drug actually do good at lower than the theraputic dosage? Do the doctors always want you to get to that dosage and then taper down a little to see if a lower dosage will work or do they just want you to stay at that dosage? Or, can you start out at lower doses and if that doesn't work keep on increasing until you get to that dosage? I know the theraputic dosage would be different for everyone, even those that weigh the same.
Posted 9/11/2014 7:12 PM (GMT 0)
@Gary, I have been reading lot recently on this drug. Normally they start on lower level(for 6 mp usually 50mg) if you get remmision then you are fine at that dose. otherwise they will increase to see.Goal is to get remmission so even after that if you r not in remmision then they might order test to make sure you are in theraputic range, if not they still can increase.
In my case, I have high levels then there is possibility to get blood or liver toxicity but those toxicity is mesured by CBC and liver function. I have those normal so he is not decreasing dose as I still have little inflamation in descending colon. He is giving few more months as 6mp is definately helping but not fully.

I beleive if you get remmission and stay there, dr might reduce dose. That was my plan but I am not in complete remmision yet.
Posted 9/11/2014 7:36 PM (GMT 0)
I was really hesitant to take it and did my best to try and avoid it but now that I've been on it for almost 3 months, I'm glad I started. I'm still on prednisone after having to have been hospitalized before the azathioprine kicked in, but I haven't felt this good all year and had been in a flare since last December. I think it's definitely helping even though I haven't reached the therapeutic dose yet. I'm pretty amazed too because my GI was really pushing for me to add entyvio, but since I hadn't tried aza on it's own yet I wanted to see if it could work alone.

Best of luck to you, I hope it works well. I know it can have some scary side effects, but there are many people who have been on it for years and done well. My GI said he's had many patients on it for years and it really has a low level of toxicity. The only side effect I've noticed is some very minor hair loss, but I've been told as your body adjusts it will eventually stop. My GI also said if you're going to have any bad reactions to it it's most likely going to happen within the first two months, so keep up with your blood work.

@Gary- My GI said that he's had people on Imuran that do well but if they flare he usually checks their TMPT levels. Most of the time they're not in the therapeutic range, so if they increase their dose it can usually bring them out of a flare but can take a few weeks or so. With my case, I have a severe disease where Remicade and Humira failed, so my GI is going to keep testing until I get within therapeutic range. I can tell it's helping though already, even though I'm on pred, I was on pred recently without azathioprine and was never able to taper this low without feeling pretty terrible, so I'm happy about it.

I've also read about people who can taper down their dose after being in remission for a while, but I don't know if that's common practice or not. I've also read about people getting off after being in remission with it for 2 years, but I guess to me that seems risky, and I know my GI would not be supportive of that.
Posted 9/11/2014 7:52 PM (GMT 0)
Thanks for the info. I'd have to agree that tapering completely off at some point (like 2 years) seems like a recipe for disaster. None of these drugs are a cure so the disease will come back at some point and it usually comes back worse than it did before and often what worked before won't work again or work as well the next time. Also, assuming that it would still work again, it takes 2 -3 months for it to start kicking in so that doesn't sound like a good situation.
Posted 9/12/2014 4:45 PM (GMT 0)
Azathioprine isn't a bad drug. Thanks to Aza I have my life back. The only side effects I've gotten was nausea, hair loss and now my liver enzymes are high but we're correcting that. I don't want to stop it because after Remicade it's the only drug which ever works for me.
Posted 9/12/2014 8:04 PM (GMT 0)
I have had good success with it. I was off for about 4-5 months with two mild flares that came right after having colds. I found I got sick a lot less in the 3.5 years I was on it. As soon as I got off imuran, BAM, back to back colds. I am getting back on imuran now after talking to my GI at a lower dose. We are going to try 100mg/daily, I was on 150mg/day for 3.5 years before. I tried staring pentasa as a maintenance med, but I quickly became ill. Nausea, vomiting, extreme D. Back to imuran I go!
Posted 9/12/2014 10:00 PM (GMT 0)
I was on aza for 5 years! It really helped me ALOT
Posted 9/13/2014 1:05 AM (GMT 0)
It works, this thing is even better than steroids ! , it might give you some nausea the first couple of months also it takes 3~4 months to kick in,

Stop believing everything you read online, i bet there is an article out there with a medical proof that water causes cancer tongue

i have relatives on immunomudulators for 30+ years (methotrexate) with no side effects, i was too scared to take it , i wish i did take it earlier.

also you might want to try mesalazine enemas
Posted 9/13/2014 2:43 AM (GMT 0)
Hey there, I started aza about 3 months ago. I didn't think it was helping, then my dr had me up to 150mg. It has been less than a week in this dose and I believe it is helping me now. I am a lot less urgent than I was. I also am not on pred anymore. This drug does have Nasty side effects, but if it works, I think it's worth the risk. I haven't had any issues yet. But it seems to be helping me now :)
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