Hi
new to this forum. Have just started taking Azathioprine for Crohns and am suffering with headaches and terrible chills and shivers, feels like I'm getting the flu and this happens every day - more in the afternoon and evening. Has this happened to anyone else and does it go?

Hey greengirl,

Sorry your not feeling the best. I couldnt tolerate azathioprine either - Not chills etc but headaches and nausea.

My gastro changed my meds and put me onto mercaptopurine (6mp) instead. I have had no trouble with taking this one.

Dont know if that is an option for you - I hope you feel better soon

Hi, I had chills moderate headache (bad enough to take paracetamol) severe nausea with these symptoms getting worse as the day progressed and obviously much worse after my last pills of the day. Thee nausea progressed to vomiting in the evenings after a couple of weeks, the cause was an inflammed liver from a reaction to Azathiaprine.

Sounds like you are having the same trouble. When was your last blood test? You should be having them weekly while starting that new drug. Are you also taking Prendesone at the moment,as that will lessen the effects of the druug reaction as well. When/if your prendesone dose is dropping each week your symptoms will get worse. Well thats what happened to me anyway...
Talk to your specialist, I think the figures are 10% of ppl react badly to Aza. Lt us know how you get on

I've been taking azathioprine for nearly three years and it's been mainly okay. I do feel nauseous on it but I'm not actually sick. In fact, sometimes I think it's the condition not the drug that's causing the nausea. I am constantly fatigued but again I think that's the condition rather than the drug. If you can tolerate it it does seem to be able to hold remission. Good luck with it.

Hi thanks for all your comments, really comforting to know I'm not alone in this. My spec only wants blood tests in 3 weeks so will have to wait and see, meanwhile chills better but headaches getting really bad. Unfortunatley I couldn't handle prednisone at all and had to stop as got major side effects. I think I will keep on this for now as from what I can see it seems to work for a lot of people, although I'm still only taking 50mg a day and spec wants me on 100g, but bit worried about upping it until I've had a first blood tests and headaches subside.

Hi everyone. I'm pretty new here - This thread is over 6 months old so I was wondering how you were getting on with the azathioprine gringo? Are you still on it?

I was diagnosed with UC about 3yrs ago. I've had the option of taking azathioprine it but I've been really reserved about it, mainly because I'm worried about the side effects. I'm getting to the point where I don't really have anything to lose. I've been on a heavily restricted (yet balanced) diet for nearly 5 months and my colitis could be described as moderate and not improving, so I think it might be time to give these meds a go.

I would really appreciate if anyone could tell me their perspectives on/experiences of azathioprine, that could help me make a decision.. thanks

I take azathioprine for my UC and I feel great on it. I have been on them for around 18 months now.

I sometimes feel a bit run down when I'm fighting off an infection or illness like a cold but other than that I can't complain. My blood tests have all been really good.

The best thing I thought with these meds is that if they are starting to affect you in a bad way like comprimising your liver you can stop them straight away and there is no lasting problems.

The downside for me is that I would like to have more children but you definitley cannot fall pregnant on these meds - not sure if you need to take that into consideration or not.

Hope this has been of help to you with making your decision. And I hope you start to feel better soon.

I've been on azathioprine for about 8 years.
no major side effects other than a bit of thinning hair and get sunburnt really quickly.
oh i used to catch every cold that was going around, but i get a flu shot every year and i'm hardly ever sick now.

i've been pregnant while on azathioprine and my daughter is fine. planning on getting pregnant again this year and i'm on 100mg.

being on azathioprine has changed my life and i wouldnt be without it!

I take 6mp (mercaptopurine) which is the alternative to azathioprine. Aza made me extremely nauseaous but I do know now that you can start off at a small dose and go up slowly which is what I did after having my son.

I too suffer from thinning hair and I also have to be a bit more vigilant when there are bugs about but apart from that Ive found it the best 'maintenance' med out there to keep me well.

I was sure you'd been on aza while preg with T Liv, so I was freaking out a bit after reading the post above yours as I was thinking Im SURE my gastro said he'd prefer me to be on it if I conceive than not. Its be a bit late now
Phew, minor panic attack

Thanks for your responses everyone, your advice has really helped

Hi - It is nice to hear that people are having babies on aza. I was told no way by all the medical people in my life.
I'm on a high dose at the moment but were you on 100mg while pregnant and trying?? What other medications were you on?
Sorry for all the questions but I want more babies.....
also did you breast feed while on the meds?
Thanks

2spotties,
I was on 50mg while pregnant. this time i'm on 100-150mg and trying in the next few months to get preg.
I'm also on Pentasa 100mg.
Yes was fine to breastfeed while on my meds.

i was under a wellington specialist a few years ago (his name will come to me eventually) and he was fine with me being on aza and getting preg. John Wyeth was his name i think?

feel free to ask anymore questions

Hi there, Im a 28y F and was diagnosed w CD in 2009, I was put on azathiaprine 200mg dec 2009, then upped to 250 later 2010, now my liver has toxic levels of 6TG so on monday I dropped to 75mg a day combinded w 100mg of Allopurinol (gout medication) so far so good, and when I finish today i have bloods (fortnightly) to check my levels LFT-Liver function test and monitor my CRP (inflammatory markers. i have not had any real side effects with Aza, hoping now my dose lower I will be able to get pregnant but I was told no breast feeding.

Good to hear that you did Olivia.

Cheers ;-)

just seen my specialist (palmy hospital) last month and he's put up my meds so now i'm on: azathioprine 200mg (4 pills) and pentasa 2000mg (4 pills) per day and he said i'm fine to get pregnant and breast feed on that.

Sorry to read about your problem. My Specialist put me on Azathioprine and I had a very bad reaction. It started as vomiting and shivers then tender knee joint progressing to the other knee,then I started getting a very sensitive tingling on the palms of both hands. Over the next 36hrs it all got worse until I was in bed violently shaking and was in agony walking due to the pain in my knee joints. To the point of not being able to get to the loo in time. My hand palms came out in red spots and were very tender.

I stopped the pills and on the monday hobbled into my GP's rooms he took one look at me and told me that I should have called an Ambulance as my body was going into severe shock. My plams ended up peeling it took me around three months to come right. Just keep track of whats happening to your body the drugs the we are given are very potent.

Thanks everyone for your feedback on Azathiaprine. My son 16, has been forced into a position of taking Aza (in combo with Prednisone) as after 6 months of suffering with severe symtoms, other softer options hav failed to produce a remission. It is good to know a) what to look out for in terms of reaction and b) that some people cope well and the desired effect of a remission is induced. I hope and pray my boy is in the later category. 2 days in on Aza and only mild chills and fevers. Some nausea too, but this could be the Crohn's as nausea has been one of his constant symptoms anyway.Fingers crossed.

Would anyone know how long it takes for Azathiaprine to work and for Crohns symptoms to abate ? Do the chills, aches, periodic fevers ie:-flu like symptoms remain a daily occurence, or do these dissapate once your body has adjusted ? Thanks

Hi Camom

My son, almost 15 years old,has crohns. Diagnosed at 10y and he's tried just about all the drugs!
Prednisone, pentasa, azathioprine, weekly methatrexate injections for a year, 6 weekly infliximab infusions for a year, and currently having 2 weekly humira injections at home.
The doctors say that it takes 6 months for azathioprine to kick in and work well.
He had constant nausea taking azathioprine so the doctors have switched him to mercaptopurine. The nausea was immediately gone.

Humira is working very well for him, he has finally grown a few centimetres since being on this drug and has put on some weight.

Current cocktail is mercaptopurine, humira, iron supplement, omeprazole (for reflux). No special diet, no nausea.

has surgery been talked about?
i had my first crohn's surgery when i was 15

Hi Olivia

Has had yearly endoscopies and colonoscopies, except for this year they have given him a reprieve as he is doing so much better. Surgery hasn't been necessary so far.

Thanks Njb and Olivia for your feedback. Surgery at this stage has been ruled out, even though we are also dealing with a weakness in the abdominal wall from a small hernia which is causing a portion of the small intestine to periodically "bulge". The surgeon we are under will not touch him unless he is in remission, and the explanation given for trying to resect a bowel whilst in a state of chronic inflammation seems reasonable. We are back to the specialist ths afternoon as 10 days on Aza has not gone well. A dosage increase from 50 to 75mg has seen urination become painful and difficulties with breathing. Urination frequency has also increased markedly, although I am told this is NOT a side effect of Aza. We seem to be making slow-to-no progress forward, with my son only havng attended 3 full days of school so far this term. He is either suffering from Crohn's side effects or drug side effects, and both are so chronic it is hard to differentiate one from the other at times. Thank you for your support and feedback. It is much appreciated.

Hi Olivia.
How did you do on 50mg Aza, were you on that dose for long? I was on 150 for three years, went down to 100 6 months ago and would love to drop to 50 but specialist says if I do I may as well stop and doesn't support the dose as a maintenance. Are other docs saying different?
Also great to hear people having babies on meds and with IBD.
Many thanks, JJ

i've had 2 surgeries so far. first when i was 15 then again at 21. both times were because i had complete bowel blockages and ended up in hospital every week.

jj - i've been on aza for song long its hard to remember all the details. i definitely started on 50mg about 8-10 years ago. was on it for a couple of years before being put up to 100mg. but then my liver became enlarged so dropped me back down to 50mg. I was on 50mg when pregnant 3 years ago.
but i still continue to have bowel issues and a constant problem with fistulas so have been bumped up to 200mg now. probly has to do with my weight and constant blood tests show that my aza levels were quite low.
thats interesting that your dr doesnt support it as a maintenance.

after my surgery at age 15 i wasn't put on any meds at all and when i needed my 2nd surgery the specialist in wellington was surprised that i wasn't at least put on Pentasa and he thinks my 2nd surgery could've been avoided had i been on a maintenance dose.

has anyone been on Entocourt?
now that was my miracle drug quite a few years ago! but at the time i was only allowed to be on it for 6 months as they found it had no better results if you were on it for longer.

Never been on Entacourt Olivia.

Was going to say that my specialist has been ok about me being on 50mg of 6mp (mercaptopurine/puri-nethol) as a maintenance dose. Its basically the same as aza.

Im sure once I have bubs they will probably bump it back up again tho

Olivia Interesting what you say about yr AZA levels being too low on maintenance. I too have been on AZA for years 100mg/day and needed 2 surgerys, (3 soon) while on it. They also found my thiporine level low but when I increased AZA to 150mg level went even lower. So my AZa levels were never at the therapuetic leve.
See my burbled mess under humira thread
yes tried the Entacourt to did noting for me.

Thanks Olivia,
I have an appointment just came through for July so I shall discuss dropping the dose to 50mg since I seem so well. I know it goes by weight too.
Roscoe I think the doses do vary betw Aza and 6MP - prob Aza has to be more than 6mp cos of body making it.
It's interesting to know people are on lower doses of these drugs though.

HI all. Having said initially my son was doing o.k on Azathiaprine and nausea was settling, it has ramped up again to the point he has been unable to eat for 48 hours and vomits anything he eats. Bloods are o.k. It is difficult to know if this is a direct result of the resriction in his terminal ileum (which is causing a significant abdomianl external bulging higher up in his small intestine around an area he had a hernia in as a samll boy)or if it is the Aza. Specialist has said to trial knocking off the Aza. Apparently we should know within 2-3 days if this is the problem, for if it is, the nausea should settle. Ileo-caeacal surgery booked, one month today.

Azathiaprine 100mg daily (was taking once dialy, trialled 50mg morning and night but made no difference to nausea)

Hows your son since stopping the Aza Camon?

Yes Roscoe he has. It hasn't made any difference to the nausea, so...bummer ! Surgery 3 weeks today. At least we have had no more vomiting, but weight is dropping due to lack of appetite due to nausea...round and round the houses....

Gosh Camon, Im so sorry to hear that! I wish you guys the best of luck with his up coming surgery & hope it brings him such much needed relief

I am new to forums in general and have just been diagnosed with moderately servere ulcerative colitis they want to put me on azathioprine too but some enzyme is low in my imune system can anyone shed some light on this