Too much aziathioprine in system

[Katie18]

Hi I recently saw my rheumatology team at Manchester infirmary and after a blood test they have told me I have too much aziathioprine in my system and have taken me off it for a week. I have been feeling a bit unwell for a few months now - completely wiped out, headaches and sickness that comes and goes and they said this could be the cause as my bloods were fine. They did the same about a year ago and said the levels of aziathioprine in my system could be harmful and I came off it for a week and then went back on at a lower dose. I’m on 125mg now. My regular rheumatologist at Airedale hospital who looks after my care has never heard of people having aziathioprine monitored like this. I just wondered if others had any similar experience? I’ve been on aziathioprine for about 6 years now with no problems.

A further complication is I’ve recently switched from hydrocortisone to prednisolone as I’m trying to come off my steroids to test whether my adrenal system is working yet as I’d been feeling so well for over a year. Prednisolone is available in smaller doses which makes reducing easier. There is a chance that is making me feel unwell although I’m currently on equivalent dose 3mg of prednisolone which mirrors 10mg hydrocortisone.

My question is whether anyone else has had to temporarily come off aziathioprine due to too much in their system?

[Suzym2u Moderator Vasculitis UK]

As I understand it patients are usually tested to see if they have the essential enzyme for breaking down the azathioprine before commencing treatment. I think it is referred to as TPMT. I believe around 1 in 300 people do not have this enzyme. I think it is just a simple blood test to find out if you have this enzyme. Did you ever have such a blood test? Maybe, if you are not sure or don’t know, next time you see your consultant have a chat with them about it. It could be you may need an alternative immunosuppressant to azathioprine.

I also believe there is a test to see if your adrenal system is working as it should. This website is very good for information about cortisone. cortisone-info.com/Side-Eff...

[Katie18 in reply to Suzym2u]

Thanks very much Suzy. I don’t know if I’ve had that test but I can ask my consultant. I’ve been on aziathioprine for at least five years without any problems. I keep getting referred to endocrinology for cortisol tests but getting an appointment is difficult and they don’t seem to have the answers I need - I’ll have a look at the website

[Katie18]

Thank you for your help

[philtw]

Hi I have been on azathioprine for 5 years at the same dose 150mgs, (100mgs in the morning and 50mgs at night) not sure if this helps with the affects, but i have been ok with this dosage. I'm currenlty on 11mgs prednisolone.

[Katie18 in reply to philtw]

Thanks for your reply Phil - glad you are tolerating aziathioprine ok - I think it does help keep the disease under control. Best wishes

[Joan78]

I am on 150 of azyiathropin and 30 mg steroids. I feel shocking but they are slowly tapering the steroids as i was so.poorly. i was only doagnosed in april. So dont know ny different really. I have to have blood tests every 2 weeks to see of my bloods are ok.

[Katie18 in reply to Joan78]

Hi Joan I hope you start to feel better soon. I did manage to get off steroids but it was by tapering v slowly. Good luck

[sorefeetsoldier]

Hi I've been on 150 mg for 4 years Be recently been put up to 200mg per day and 60mg predict from 15mg, no probs so far but eye pain and toothache where I don't even have teeth is unbearable, I was told the Aza dose is determined by individual body weight ratio ?

Keep your chin up 😄

[sorefeetsoldier]

Prednisolone not predict.

[eternalgardener]

I was taking 10mg of prednisone when I began Azathioprine (I'm in the US but I think this is the same drug.) I became extremely ill after only a few days and had to go to the emergency room. My liver function was way off - hepatitis caused by a reaction to the Azathioprine. Liver function was back to normal soon after stopping Azathioprine.

[Katie18 in reply to eternalgardener]

Thank you that’s useful to know. Hope you’re doing much better now.

[zoe69 Moderator Volunteer Vasculitis UK]

I have been on azathioprine the last 3 years and as far as I know never been tested for azathioprine levels. I don't think they can measure it ( I can be wrong of course). Maybe your blood test indicates that your immune system is too low and they hope that a small break from taking immunosuppressant will help.

I know people that stopped taking it for a week or so while they were fighting bad chest infections.

I hope that helps.

[Katie18 in reply to zoe69]

Hi Zoe apparently they can measure how much aziathioprine you have in your system & too much can be harmful. It is through a blood test. I’ve been advised to come off it for 2 weeks & then go down to 100 instead of 125 before measuring it again. I have felt better off it. I’ve been on it for about 6 years and never had any issues before.