Side effects of Azathioprine

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Catattack

Joined
Jun 2, 2012
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Hi guys,

I started taking Azathioprine three weeks ago as I'm having trouble getting below 20mg on the old Prednisolone. I started on 50mg a day for a week, then 100mg for a week and now I've been on 150mg for the last week. I was told I might feel a bit sick/flu like when I first start however I was absolutely fine. The problem is the last couple of days I keep feeling really tired/wobbly and a bit queezy. I also have this really bitter taste in my mouth all the time. I presume this is just my body adjusting to the higher dosage and will hopefully pass after a while? I'm having weekly blood tests and they have come back as normal so far. Has anyone else experienced these sorts of side effects? If so did they pass after a while or do you think I need to be giving my doctor a call? I'm due to go back and see him anyway mid November.

Cheers! :)
 
Hi Catattack

I am keeping an eye on this post as I have just started on AZA straight in at 100mg & I am feeling the tired wobbly & queezy stuff too. Woke up this morning with a bad headache too although maybe I would have gotten that anyway.

Helen
 
Hi folks
Yes these are common side effects and should settle as your body adjusts. I started by taking mine at night in order to sleep off any effects, but when I got to 100mg I started waking in the early hours with awful headaches.
Friends here advised splitting the dose and that really helped with the headaches and nausea. I now take it morning and evening with food.
 
Hi Helen, thanks for your reply. Can I ask..approximatley how long did it take for your side effects to settle down (are we talking days or weeks?). Ive felt yukky for about a week now and I'm getting pretty fed up (Im quite impatient!). Im desperate to come off the Prednisolone so Im keen to give the AZA ago but Im feeling worse than Ive felt for ages...it even feels like my Crohns symptoms have got slightly worse again (I know the AZA can take a few months to combat the Crohns). None of my side effects are extreme, I generally just feel a bit 'off' Im just not sure how long I should expect to feel like this before giving up on the AZA!


Thanks
Catherine
 
I've kind of forgotten now, but it wasn't that long. A month at most. The splitting of the dose made the biggest impact. It's worth sticking with it to get off the Pred.
 
I just started 60 mg of pred a few days ago. 3rd flare this year. My doc wants me to start Imuran in the very near future. I'm so scared of all the possible side effects... Please keep us posted on your experience with this treatment!
 
Hi, how are things going for you both? I am really interested because my daughter started on aza just a week ago and has been having terrible headaches and complaining of feeling queezy. Her nurse says to give it till today then come off them for a few days to see whether it is the meds but i think based on these posts she will be happy to try for a bit longer. Would you update when you get a minute if poss please?

Thanks, Tracey
 
Hiya..yes Im still feeling queezy. Ive been on my full dose (150mg) for two weeks and ive felt like this for the last week. Im going to see how I go for another week and then Ill give my consultant a call. Its horrible feeling like this but Im just hoping it will be worth it in the end. Weirdly I find eating helps with the queezy feeling..if I let myself get too hungry it seems to be worse.

Best of luck to your daughter.
Catherine x
 
I have just started Imuran and have the extreme tiredness and wobbly feeling too. It's like a shaky feeling and I'm not a fan. At least I know that there are others who have this same symptom, I was beginning to worry about it.
 
I started imuran on July 20th; the day I got out of the hospital. The wobbly fatigued feeling was strong at first but is not so bad now. I am still fatigued though, and get the odd episode of feeling out of sorts. I take my imuran in the evening because that is what my GI suggested. I find that time works well.
 
Make sure you follow the doctors orders. I would check with your doctors before doing the splitting. I always take my Imuran at night before bed and I also went through a 2 week wobbly period. I have not gotten any headaches, however, I have not gone above 50 mg. Always follow your doctors orders in dealing with the Imuran, dosage, and blood tests.
 
Hi
Just an update. the queezy feeling is not so bad anymore. I also find eating helps, just plain crackers or a biscuit. The headaches & stiff neck are still there but intermittent so not enough to stop me taking it. The tiredness is still there though but I will deal with that by trying to get a bit more rest where I can.
Hope everyone is doing ok x.
 
Last edited:
I have had headaches (similar to a migraine) when I ramped up the dose to 200 mg/day a couple of years ago so I ended up splitting the dose 100 mg with breakfast and 100 mg at supper. I am not 100% convinced the headache was from Imuran though - it may have been an early sign of a sinus infection as I ended up with a sinus infection a week later.
 
When I first took Azathioprine (Imuran) I started to get joint pains in my knees and fingers. When I woke up in the morning it would take about 10 minutes before I could move my joints freely and get in the shower. Went on for a few weeks then disappeared.
 
I started on AZA in May (50mg for a week, then 100mg) and tapered down from 40mg of Pred over 12 weeks. I was off the Pred for about a month but the diarrhea and bleeding came back so I've had to increase AZA to 150mg (the maximum for my weight) and I'm on another 6 week course of Pred. I can't tell which drug my side effects are from but I'm thinking it's the steroids as I've been having trouble sleeping, sweating for the first few nights and have an increased appetite (craving really bad foods). I can't say I've noticed negative effects from the AZA but I really hope that it keeps me well once the Pred finishes.
 
Hi Lizzy, yes it sounds like those side effects are steroid related. I hope your Aza starts to work soon. My appetite on the steroids has gone through the roof! I literally can't supress my appetite despite eating all the time..it's horrible. I've been on steroids for 12 weeks and will be for another 12:-/...I really hope I don't put on too much weight!

I'm still feeling a bit queezy on the Aza although it seems to be getting slightly better (gradually). My consultant gave me a call today and he said that the queezy feeling can last a few weeks so to try and hang in there, so fingers crossed it will all be worth it in the end.

Catherine x
 
Ok, so four weeks on the full dose (150mg) and I've finally stopped feeling sick/wobbly....so for anyone experiencing those symptoms hang in there! The side effects seemed to be the worst the third and fourth week of taking it and then things gradually seemed to improve. Now all I have is just a really nasty bitter taste in my mouth all the time (along with a lot of bloating/trapped wind...but I think that might be the Crohns). Has anyone else experienced this bitter taste? If so, does it go away eventually?! I really hope so...

Catherine x
 
I was on Azathioprine between May 1999 and July 2008. After I got over the initial joint pains, as mentioned in an earlier post, I found it really helped keep the Crohn's under control. I only came off of it because it appeared to be causing my platelet count to go low. However, because of some recent health problems, I've seen a liver specialist and he believes that the low platelet count has nothing to do with the Azathioprine. (Which makes me wonder if I had kept on it would I have still have needed an ileostomy)
 
Hi Brian

If my daughter's experience is anything to go by (though I know we are all different) hopefully you are past the worst of your side effects. My daughter had the severe headaches and a fair amount of nausea when she first started taking Aza at the beginning of August, but after a few weeks, thankfully, she began to improve. Our doctor also told us that they had never heard of headaches as a side effect, which started me off on my usual exaggerated imaginings of all sorts of other explanations, so i am so glad i found the forum. My daughter is responding well to Aza at the moment, her blood tests are fine and she has had no further side effects, I do hope that you follow the same pattern and stay well.

Best wishes

Tracey
 
Hi Brian I had the same symptoms. Which did Improve. Sadly I have now got gastric inflammation which has been quite severe which may or may not be from aza but has been bad enough for the crohns nurse to discontinue the aza.
 
My side effect was that I had cold sores constantly, then a sinus infection, then my feet broke out in itchy, watery blisters. I took myself off them asap. My doctor had never seen the blisters on the feet before but he agreed it had to be the Imuran. Weird I know
 
I was just prescribed Imuran today, and will start at 50mg tomorrow. My GI has me starting at the 50mg dose for a full month before we start increasing it (of course with the conjoining weekly blood work :p). She put me on it in addition to Remicade to try and get some better success with dealing with the Crohns!
A little concerned about the side effects, as my doc likes to make sure I know ALL of the possibilities, including pancreatitis! It feels like the possible side effects lists keep getting longer and longer!
The tips you guys have given re: taking it at night sound good, and I think I will try that!
Good luck with all of your side effects! Hope the Imuran works well for everyone :)
 
Hi :) I have been on aza for a couple of years now, I had some of the same side effects as you to start with (especially headaches, nausea and funny taste) but they faded within a couple of months for me. I dont have any side effect now that i notice and it is the only med that mostly keeps my crohns under some sort of control. I am having some cramping and pain issues at the mo but i have had over 2 solid years of moderate health, so my opinion is that they work! I take mine (175mg) around 9-10 pm and have no issue with sleeping that i would blame the aza for. Good luck with it :)
 
I should add that it wasnt the aza that stopped the last big flare.. that was remicade (cannot remember the other name for it) drips, but the aza was given as maintenance to keep it gone :)
 
well, I think I am trying to convince myself to start imuran. I have read a bunch of reviews regarding side effects and some are scarey. That is putting my off, but I know not all people have same reaction. started Crohn's at age 25, 1982. resection 1989, 1999. have not been on meds for almost 12 yrs. take vitb12 shots monthly, just bought some vit d, iron, multivitamens. I know I should prob start something. Did see specialist he has always wanted me to go on it and I have always said no as I was not having issues. having minor flareups, had a painful weekend about 3 weeks ago and have bought the imuran but need to have blood test b4 I start. Haven't done that yet. Sooo, I am going thru the forum reading and searching. one site regarding side effects average was 3 (scale of 1 - 5) more negatiave about taking it. another site was more positive. I would like peoples opinions about the drug, their take on it, side effects etc. I think I will go for blood test tomorrow. Did have a colonsocopy sept 27, shown active Crohn's. I have been advised to go on something if not imuran (from this forum) but I would like info from people who have been on it, get their advise.
One lady had skin lesions on her face and legs, pneumonia 3 times, that scared me. but not everyone is the same. Soo what info, advise do you have for me... please..
 
I think going on Imuran will have fewer effects longer term than having repeated flare ups of your crohns which may end up with you needing steroids or even more surgery one day. Yes there are som potential nasty side effects which is why you need regular blood tets so if you developed these they would be picked up and you would then be taken off it. Having said that the vast majority of people dont get these major side effects. I did have nausea for about five weeks when I first started on Imuran but that has now gone. That was difficult to deal with but I stuck with it as I was unable to come of the steroids without flaring up. The only side effect I have now is a bitter taste in my mouth. Luckily the imuran now seems to be working (its taken 3 months) and I am finally starting to taper off the steroids.

Good luck with your descision!
 
Good luck with it...I hope it keeps things under control for you. As I say it took a good three months for it to start working with me and even now its not a 100% so its one to be patient with. Will you be starting on a lower dose and building up to your full dose? Also are u having regular blood tests to check your white blood cell count and liver function?

Take care
Catherine x
 
I started Imuran last Thursday everything was great over the weekend and now I'm feeling the nausea and headaches mentioned above. Does it get better? I've been trying to eat as much as I can to help w nausea . The nausea comes and goes especially when I am driving. Idk what else to do!
 
squeaky said:
Had blood test same day I started. starting at 25mg for 5 days then 50, 75, 100, 125, 150, then stay at 175...
Click to expand...

Oh I see..yes it will take some time to work...your looking at about three to four months from when u get up to full dose. I didnt start getting the nausea untill the second week I was on the full dose (I also increased gradually the same as you). I felt sick/wobbly and generally just a bit off for I would say about 4-5 weeks. It felt like it would never end and I was very close to giving up on it as it wasnt doing anything for the crohns initially. However now all the sickness has gone and the crohn s is more or less under control and Im managing to taper off the prednisolone (Im down to 10mg a day now and will try 5mg next week). So all in all Im glad I stuck with the AZA but it was a difficult few weeks. I know a lot of people dont feel sick for that long and some dont get it at all so fingers crossed its kind to you!
 
I remember going and basically whining at my gp for about ten minutes about the aza side effects and he just kept saying i had to give them chance before he would try something else lol. turns out he was right about them. I hope they help you as they have done me, if they are the right med for you its worth sticking at for a bit. Totally sympathise though, as i am sure everyone on here can.
 
I'm off to see my consultant on Tuesday to ask about whether I should be back on Azathioprine as a maintnenance dose (two years on from resection). It's interesting that you have been without meds for twelve years. Maybe I can go a bit longer without them.

I've read some of the warnings about side effects on the internet but I tend to be a bit wary of the overall impression it can leave you with. It's more likely that information will be posted on problems with a particular drug than positive reports. Whilst I will take notice of possible side effects, so I know what to look out for, it won't stop me trying a new drug as we all react differently and I might be completely unaffected.
 
Hi Guys

I have this year been diagnosed with Crohn's disease and was initially on steroids which worked fantastically for me but unfortunately could not stay on them.

I started AZA 100mg a day, 4 weeks ago today and have recently been having some horrible side effects. All your posts have been sooo helpful to make me feel like I'm not the only one. I have had dizziness, tiredness, headaches (which like many of you were told this was not because of AZA!) feeling sick and the last couple of days awful fever cold shivers and then hold flushes (bad enough to take time off work, which for me I don't do!!).

I contacted my consultant yesterday who has told me to split my doses. So lets hope this helps.

I am hopeful in reading your posts that if I hang on in there ill get through it and it will be worthwhile!

Thanks you

Jess 😊
 
Jlc

Have you been having regular blood tests, my daughter's were weekly for the first five weeks. Aza required carefully monitoring.
 
Hi Catherine

Yes I have had regular blood tests ever week and one today but obviously will have to wait until next week for results of that!

I have been trying to get hold of my Doc today as I am really struggling with no luck so am just trying to bear it at the moment.

Thanks 😊
 
I had a horrible reaction to Aza. Not just nausea, I was violently sick over 30 times one night and by the end I was bringing up blood. It was a shame because it was helping my bowels. I am also having less severe side effects with 6mp. Apparently some people tolerate it with no or very few problems even at high doses and some are super sensitive. If its bearable I'd say persevere because it does work.
 
Hi Squeaky!

I was on Pentasa for a few years, on and off. I was like this as I had no symptoms and I thought 'whats the point'. Then 6 months ago, I first had my 'proper flare'. After many tests and months of waiting, they decided to put me on Aza.

Taking Aza is a big step for me. Especially when reading some of the side affects, nearly sent me running! (especially the big C) Reading comments from the Forum I realised that not everyone gets symptoms and is worth a shot in the long run. I have 2 strictures (which im told are not the main issue) and a big long 5ft of inflamation in between.

I weighed it up and the thought of a few colds verses the inflamation turning to scaring made my decision for me really. Im on day 2 of the tablets and Im not sure what I was expecting really - as if I would take the tablet and something bad would happen straight away! Nothing so far, just hoping my blood tests are okay next week.

Good luck in your decision!



squeaky said:
well, I think I am trying to convince myself to start imuran. I have read a bunch of reviews regarding side effects and some are scarey. That is putting my off, but I know not all people have same reaction. started Crohn's at age 25, 1982. resection 1989, 1999. have not been on meds for almost 12 yrs. take vitb12 shots monthly, just bought some vit d, iron, multivitamens. I know I should prob start something. Did see specialist he has always wanted me to go on it and I have always said no as I was not having issues. having minor flareups, had a painful weekend about 3 weeks ago and have bought the imuran but need to have blood test b4 I start. Haven't done that yet. Sooo, I am going thru the forum reading and searching. one site regarding side effects average was 3 (scale of 1 - 5) more negatiave about taking it. another site was more positive. I would like peoples opinions about the drug, their take on it, side effects etc. I think I will go for blood test tomorrow. Did have a colonsocopy sept 27, shown active Crohn's. I have been advised to go on something if not imuran (from this forum) but I would like info from people who have been on it, get their advise.
One lady had skin lesions on her face and legs, pneumonia 3 times, that scared me. but not everyone is the same. Soo what info, advise do you have for me... please..
Click to expand...
 
This is my third week on Aza. Still experiencing nausea in the mornings , some more than others. I continue to wake up with a headache about every other morning but as soon as I eat it tends to taper off. The only thing I so far dislike other than the nausea is the fact that my skin is now so sensitive to the sun. I'm 21 and live in Florida. The sun is out 90% of the time and even though it's almost december it's 80 degrees sometimes. Last week I spent ten minutes in direct sunlight and my skin was itchy for days. Not red just itchy. There is no way I can stay on this during the summer months. Does the skin part get better?
 
I haven't had any issues with sun sensitivity... but I also live up in Canada, and currently we are in the middle of fall/winter! Hopefully you do not have to deal with the sun and itchiness for long! Especially being in Florida...

I have had the nausea and headaches for awhile now... I started on 50mg a day for a month, and then now my GI has upped me to my "target" dose of 150mg. I didn't really experience many side effects at all until I was pushed up to 150mg... now I feel like I have a headache every day and always at least a bit of nausea. Also think I have some hair loss... Seems that way anyways.
 
Hello all...I'm glad to have found this site. Have had Crohn's for 22 years and will be starting AZA next week. I have just been taken off Methotrexate today since I was having bad reactions to it. I am also taking Remicade. Can anyone put my mind at ease with the hair loss side effect. Started loosing my hair with the Metho and am hoping it will stop with AZA....
 
Hiya...I hope the Aza works for you and you dont get any ill side effects. I dont think hair loss is a very common side effect with Aza. Ive been taken it for about five months now and it hasnt effected my hair at all. Good luck
 
Thank you for replying. I was worried I would have to get a wig since my hair has fallen quite a bit with the Methotrexate.Crossing my fingers that this will work and won't have too many side effects.
 
For those of you having nausea with Aza, try ginger, either as a tea or in a mint form, such as Newman's Own Ginger (available in health food stores -- it looks like lifesavers in a roll, or like altoids in a metal box). A friend of mine found it helpful for morning sickness, so I tried it when I first started on Aza and it really helped. If you find it too strong, just nibble the edges.
 

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