New medication- Azathioprine

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tommy07

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Mar 28, 2017
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Hi, I have previously posted about this drug, however I am about to start it Monday and was wondering just before I did maybe I should ask my question again to see if anyone else may answer with their experiences on the drug.

So my consultant has recommended me to start azathioprine Monday, I think the dose is 150mg as I am 77kg currently. Shitting myself about the side effects however my bowel did perforate and I don't want that to happen again (I do have crohns, and should be having my ileostomy reversed soon, yes my surgeon is happy I start the drug even though it will have some effect on my healing process).

Anyone on the drug? How is it? How long have you been on it for? Anyone got any good case studies about it to read/research? should I take it or is there another drug I could take with less side effects? Thanks.
 
Hello,

I have been on it one year, no issues with it and my test results have all improved. When is your ileostomy being reversed because I would seriously be considering starting it afterwards due to the healing process.

Due to you having a history of perforating, this drug or a biologic, which carries the same risks and side-effects would be the most appropriate treatment.

Which side-effects are you concerned about specifically and I would be happy to talk you through them :)
 
Hello! I've also been on azathioprine for 8 months and haven't had any issues. I did experience a sore throat and chills a few times in the first couple of weeks but it soon passed. I would certainly take it again in future!
 
eleanor_rigby said:
Hello,

I have been on it one year, no issues with it and my test results have all improved. When is your ileostomy being reversed because I would seriously be considering starting it afterwards due to the healing process.

Due to you having a history of perforating, this drug or a biologic, which carries the same risks and side-effects would be the most appropriate treatment.

Which side-effects are you concerned about specifically and I would be happy to talk you through them :)
Click to expand...

Hey, thanks for the response. I am glad you are well now too :).

I am mainly concerned about the rare types of lymphoma and the skin cancers which seems like a given rather than a chance, I have researched a lot online and it seems a lot of people have had this after using the medication. How do you rest your mind to block out those worrying thoughts? I am not too worried about the immediate side effects, I did have an infliximab transfusion before my operation because they thought my crohns was super active, yet it was because my bowel had perforated even though the crohns had settled pretty much. I was a very complicated patient so its a long story haha..

Anyway onto my reversal, I was dosed to the max with steroids when I had my first surgery and my surgeon would not have not done the op if it wasn't an emergency and I healed really well, and that was open surgey to the maximum. Maybe he is thinking it will be a small operation and I will recover just like I did previously fine, plus I'm only 21 maybe it all factors in. I see him in 2 weeks anyway.

Thanks for your reply. :)
 
tommy07 said:
Hey, thanks for the response. I am glad you are well now too :).



I am mainly concerned about the rare types of lymphoma and the skin cancers which seems like a given rather than a chance, I have researched a lot online and it seems a lot of people have had this after using the medication. How do you rest your mind to block out those worrying thoughts? I am not too worried about the immediate side effects, I did have an infliximab transfusion before my operation because they thought my crohns was super active, yet it was because my bowel had perforated even though the crohns had settled pretty much. I was a very complicated patient so its a long story haha..



Anyway onto my reversal, I was dosed to the max with steroids when I had my first surgery and my surgeon would not have not done the op if it wasn't an emergency and I healed really well, and that was open surgey to the maximum. Maybe he is thinking it will be a small operation and I will recover just like I did previously fine, plus I'm only 21 maybe it all factors in. I see him in 2 weeks anyway.



Thanks for your reply. :)
Click to expand...



I don't put it out of my head but I do only think about what I can control. I can wear sun screen and cover up, but realistically there's nothing I could do to stop lymphoma. It is a TINY chance, and yes it happens, but people are much more likely to comment online and the like when they've actually had a bad experience than when they've been fine. When I went I can't remember the exact figure but it was something like a 1.9 chance of developing lymphoma in a normal person. Azathioprine increases that to something like 2.9 ish so it's not a huge leap up. Yes it's there but I'm hedging my bets!

This medication wouldn't be suggested if the benefits didn't outweigh the risks. It sounds like you've had a rough time of it already you poor thing! It's a personal decision but I decided I would rather live my life and enjoy it than continue feeling crap and if I'm one of the statistics in the end then I'm going to make sure I've had some quality of life and fun. Crohn's already robs us of so much! Ask your doctor about my figures as they won't be exact but they're in the right region.

Best of luck :)
 
I was on Azathioprine for six years, just stopped taking it in January. Be very careful out in the sun. I would burn horrendously, even the part in my hair, if I didn't cover up. I had leukopenia the whole time I was on it. I had to go on the lowest dose, and it was still affecting my blood cell count. It and Remicade kept me in remission for three good years. The last year I had nine colds, multiple yeast infections, oral thrush, strep throat, and demanded to be taken off. It may not affect you as badly, but get your flu shots and stay away from sick people. I think my hair is starting to grow back some.
 
1 year here. No issues apart from some nausea the first couple of days. However I had to reduce the dose after 6 months because my liver results were out of range, which was also the point where it seemed to start working.

Having inflammation also increases your risk of cancer, and every drug has side effects.
 
Thank you very much for the messages, I appreciate the comments to help me feel better about taking the drug. :)
 
My son has been on Azathioprine for 6 years with no ill effects.

Have you had the TPMT blood test done?

When you start taking Azathioprine ensure you have your Full Blood Count and Liver Function Tests done weekly for the first 4 weeks then fortnightly for 4 weeks and then at 12 weeks. If all is well it is best to then have bloods done every 12 weeks.

Also after you have been on the drug for a few months you should have Thiopurine metabolites done. This will establish how you are metabolising the active ingredients and allow the dose to be adjusted accordingly if needed. It is a far more individualised approach rather than the stock standard weight to milligram ratio.
 
My pharmacist just recently told me that everyone on immune suppressants should avoid people who have had a live vaccine. He said it is rare, but possible, to catch what they were immunized for. For instance, if a child had the measles vaccine, it's possible for you to catch measles.
 
I think what is important to think about is the word "significant" is used a lot when describing medical outcomes. So there is a "significant risk" of skin cancer... however the use of the word significant in this way doesn't mean extremely likely. It just means in research studies p<0.05. When this is found the finding is labelled significant. I think to the lay person this terminology can be alarming. The reality is though, the risk of developing lymphoma to the average healthy person on no medication is about 1 in 10,000. For the IBD patient taking azathioprine this risk increases to around 3-6 in 10,000. So not really a big leap - it almost seems hardly worth mentioning right? Yet this is a "significant" finding. It's also worth pointing out that as soon as you stop azathioprine your increased risk of lymphoma goes away.

As for skin cancer, I believe this is more of a risk when you have been on azathioprine for more than 5 years. I'll admit this one concerns me as well. To overcome my anxiety about this I cover up/stay out of the sun, I wear factor 50 sunscreen ensuring it protects against UVB and UVA (some don't) I use La Roche-posay Anthelios spray. It's also important to remember that most skin cancers are very treatable and it often just involves having a little mole cut out. Most of the data on the increased risk of skin cancer while on azathioprine has come from patients who take it to stop their body rejecting organs after a transplant. They are on much higher doses and usually take it for decades. It would therefore seem reasonable that they are at higher risk.

Another thing that helps me is that research is moving all the time. There are lots of trials going on at the moment investigating all kinds of treatment for Crohn's. There are several trials investigating promising treatments that do not suppress the immune system. I therefore would like to think in a few years something better will come along and I can stop this medication so that I won't need to take it for decades and then my risks will hopefully go away.

I've had a perforation before too and they are scary. I'm not sure what the odds of dying from one of those are, but I can probably hazard a guess that it is MUCH more likely than you having a cancerous side-effect from azathioprine. They are not to be messed around with. I would do everything you can to prevent a repeat of one of them happening to you again.
 
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That's really interesting, thank you for all the detail. Lots of things in there I never would have otherwise considered!
 
I hope it is ok to go ahead and post my Azathioprine question in this thread. My son (15 yrs old) has been on this drug and sulfasalazine since February of this year. He recently started randomly vomiting (about 3 weeks now). He will be great, then get sick, then great again. It is not that often, about twice a week.

I know one of the side affects of the medicine is nausea, but he didn't get nauseous until now, not at the beginning. Also, my doc hasn't had any blood work done. He said my son would have blood work done this summer. That is 5 months or more after being on Azathioprine. One of the post said that they had lots of blood work. Should I insist on more blood work?

Thanks for all of the great info you guys post!!
 
sgholmes2002 said:
Also, my doc hasn't had any blood work done. He said my son would have blood work done this summer. That is 5 months or more after being on Azathioprine. One of the post said that they had lots of blood work. Should I insist on more blood work?
Click to expand...

Errr yes. I had a test after a week, then another after 2, and every three months thereafter. And I think that's less than some have had. He really should be being monitored more closely.

Vomiting could be down to the disease and not the drugs of course.
 
For sure, I had them weekly to start with, then fortnightly and now monthly. Eventually this will go to every 3 months if all is well. This is because the drug can effect liver & kidney function so this needs to be monitored closely, especially in the beginning. I would take him back in and seek clarification on this as it does seem strange!
 
I had monthly full blood counts.
Bone marrow suppression is a serious side effect of chemotherapy and certain drugs affecting the immune system such as azathioprine.
Bone marrow suppression or myelotoxicity (adjective myelotoxic) or myelosuppression is the decrease in production of cells responsible for providing immunity (leukocytes), carrying oxygen (erythrocytes), and/or those responsible for normal blood clotting (thrombocytes)
 

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