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Worried about taking azathioprine.

Hi, This is my first time on here.
I am 42 years old and was diagnosed with Crohn's in 2009. I have found that I am unable to take Mesalazine due to it worsening my symptoms.
I am never without symptoms but am managing ok by taking budesonide when the symptoms get too bad. My consultant wants me to take Azathioprine but the list of side effects has me worried!
To be honest I don't know what to do. I have never been as ill as I was when I was first diagnosed and read that you can only take azathioprine for 5 years. Aside from the list of side effects what happens in 5 years if my condition worsens?
I would much appreciate your thoughts as I have been burying my head in the sand for the past 5 years.
Kind regards.
 

valleysangel92

Moderator
Staff member
Hello there
First off, welcome to the forum :) I'm glad you found off

Where did you hear that you can only take Aza for 5 years? There are lots of people here that have taken Aza for much longer than that without issues.

Yes the side effects cab be scary, but the results of undertreated crohns are far worse. If you leave crohns untreated you can develop really serious complications including a perforation.

If you are constantly getting symptoms you NEED to be treating it, not just when it gets worse but all the time. Steroids like buedesonide can have just as many side effects as the long term treatments, infact, steroids are more dangerous when used more than necessary.
 
Thanks for your reply. I read about it "on-line".
Maybe I should read more about what can happen if I don't take it. As opposed to what can happen if I do. I think the Mesalazine incident didn't help because it took a long time for me to get my consultant to believe that it was making my symptoms worse.
 

valleysangel92

Moderator
Staff member
Ah there you go. Reading about things on line is something you should be really careful about. There is a lot of misinformation on the Internet. I was placed on azathioprine briefly and was not told of a time limit and I'm now on a medication called mercatopurine (6mp) which the sister drug to Aza, and has the same risks and again, I have not been given a time limit, instead I've actually been told I could be on it for a decade or more.

If you leave crohns untreated You can get severe nutrient deficiencies, you can get blockages which can burst your bowel which can result in sepsis. You increase your risk of cancer in your bowel (more than the risks of the medications) . You really don't want to go down that route. I know people who have been on deaths door with this illness.

Mesalazine is the mildest drug used in crohns and often isn't enough to control it.

You are having symptoms for a reason, don't ignore them
 
Yep. I've already had an iron infusion due to low ferritin and can't tolerate iron tablets.
I've just been thinking that I'm much better than 5 years ago. Moderate instead of severe. Who knows whats around the corner.
I need to give myself a shake.
Thanks again!
I think myself lucky that my symptoms are not so bad in comparison to a lot of people.
 
Hiya and welcome!

I'm 14, and have been taking azathioprine for 2 years (just under)

I can say, hand on my heart, I havnt ever had an issue with it. I basically don't notice it's even in me. Maybe a few times I've had a little headache from it, but it's really nothing.

A tip I've learnt; if you are worried about side affects, split your dose in half, take half in the morning, and half in the evening, instead of all of it at once. I tried this when I was getting headaches and it really worked!
So if you do start on it, give that trick a go.

Also, be patient with it. It can take a few months for it to really get to you, and start fixing you up, so if it's not working after a month, don't screw it and stop taking it.

I had surgery in December and since then have not had a single symptom, and I'm told it's because of my Azathioprine keeping flares at bay!

It's really an amazing drug. I think you should give it a go. :)
 
Thanks Kitty. I'm grateful for all of the feed back. It's really making me think differently about Crohns! Good luck to you with everything.
 
Thanks. I feel pretty bad about asking because everybodies symptoms are a lot worse than mine. This is why I have a problem taking the meds. If I was really ill I'd be on them in a flash.
 
Hello from Greece,i was searching about some b12 vitamins my doctor suggested me to take and accidentally found this forum,but i'm glad i did and i became a member..
Our experiences exchange may be reliefing some times for someone..
So about AZA dear friend,i am 32 years old,diagnosed on 2001 and i'm about 10 years on AZA now and everything is going perfectly,
BUT everyone who takes it should check himself very often (3-4 times a year my doctor says),i think to ensure that the medicine hasn't affected anything...
but i managed to put on my schedule these blood tests,so everyone can do it too!
 
Beware dr google,its never good news!its good to be informed but the leaflets with your meds,don,t you just love them?they are mostly a cover your back exercise as the vast majority have no issues and the rest should be picked up with our regular check ups and blood tests and meds altered before anything happens.does anyone really want there crohns left untreated because the effects of it untreated are awful.
 
I am new to this forum or any forum but eventhough I am crying right now I want to comment on something. I have had 3 kidney transplants since 1974
with that said with my first transplant I was given Imuran which I think is the brand name for azathioprine, if I an wrong please forgive me. I took it with other medicines as high doses of prednisone and cytoxine for 20 years the length of time of my first transplant. There are some serious side effects from my taking the medicines. Of course by the second and third transplants They have got newer meds. I probably developed Severe Crohn's about 6 years ago very unusual because I am currently still taking immunosuppressants and am a handfull of transplant pateints that developed not only Crohn's but rhuematoid arthritis that has had a transplant. I was wondering if there were any other trasplant patients that have autoimmune diseases such as these or others? Also my dignosis of Crohn's was very hard for doctors to make and they finally did at Duke Univercity Med Center 2 years ago at which time I was put on IV med did not work tried another med Humira but I kept getting lung infections so they did an ileostomy. I already have no colon due to 2 earlier boughts of colon cancer. Now I am developing fistulas between my rectum and small bowel and just had surgery for abscess that had formed in my rectum out to my "cheeks" in my rear (still hurting).
 
I think I should explain I think I put my message the wrong place. Any immune suppressing drugs can have serious side effects. From cancers to stomach upset, my biggest issue form the years of AZA is skin problems. All depends on the dosing, the length of time on them and you must really have a good primary doctor to keep watch on these things. Sometimesspecialtist tend to be more concerned with their specialty.
 

my little penguin

Moderator
Staff member
Jfk1957
There is a strong relationship between crohns and inflammatory arthritis.
There have been a lot of studies on it.
Once the crohns flare gets under control the arthritis typically gets controlled as well.

Not all drugs are the same.
Some biologics work well for crohns but not arthritis and vice versa.
Plus some people defy the odds and develop things while in the very drug to treat it.

Ds developed juvenike spondyloarthritis despite being on humira and despite his crohns being under control.

Have you ever tried simponi or stelera ??
Both have good success for Ibd and arthritis ...
 

David

Co-Founder
Location
Naples, Florida
Welcome to the community. One thing you may want to ask your consultant is if they're willing to do a TPMT test (click that link) before they put you on azathioprine. It's a test that will help them better optimize your dosage to reduce the chance of some side effects.

All my best to you.
 
Hello,

I've been on Azathioprine for 8 years and i'm only 20 and have been pain free up until now, I wouldn't worry about the side effects they're not even 1/10000

All the best
 

David

Co-Founder
Location
Naples, Florida
Hello,

I've been on Azathioprine for 8 years and i'm only 20 and have been pain free up until now, I wouldn't worry about the side effects they're not even 1/10000
Side effects from azathioprine are substantially more common than 1/10000 and patients should be made aware of what is possible so they know when to contact their doctor should something arise. I assume you may be speaking of cancer which is rare, yes, but there does appear to be an increased risk. Here's some data: http://www.ncbi.nlm.nih.gov/pubmed/23514635
 
Thank you David. I will definitely do that. I told my consultant that I am worried about the side effects which would have been an opportunity for him to mention the test. He hasn't said anything about it so maybe it isn't something they do on the NHS in the UK. He has given me a couple of months to think about it.
 

valleysangel92

Moderator
Staff member
They do them in the UK but they will normally just say they are checking for enzymes. It's usually routine for doctors in the UK to run bloods before starting an immunosuppressant which include this. If he doesn't suggest bloods then make sure you ask them
 
David, is this a correct reading of that study?

That study was for approx 8 years for 45,986 people with IBD.

They had 2596 cases of cancer reported. If it was one case per person that's about 5%.

Then they talk about the Aza General cancer rate which theu describe as 1.41, although with what looks like a big confidence interval.

So 5% increased by 41% is about 7% isn't it? The higher rates specific cancers scare me a bit but the underlying rate is prob v small. Ie 200% increase on a 1/1000 is still small.

Good news is that risk seems to drop when you come off....

My stats is very rusty :blush:
 
I couldn't get my head around the study and have saved it to look at it again. I was told that you are more likely to develop cancer if you didn't take it than if you did, so what's that about?
I was also told to be more worried about pancreatitis, liver problems and something going wrong with my bone marrow. All adding to my problem with taking it when my symptoms aren't that bad.
 
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