Azathioprine: Hi I’m due to start Azathioprine... - Vasculitis UK

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Azathioprine

Mish-da profile image
21 Replies

Hi I’m due to start Azathioprine tomorrow for my GPA vasculitis. Over the past year I have been on Methotrexate and mycophenolate unfortunately I could not tolerate the side effects with either although the Methotrexate worked quite well, the mycophenolate didn’t do much at all to reduce my symptoms. I’m pretty anxious about this new treatment and hope I can tolerate it as well as experience some positive effects as I'm at my wits end😒.

I would love to hear from anybody who has had success with this drug.. not wanting to read the side effects or horrible experiences people have had!!

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Mish-da profile image
Mish-da
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21 Replies
Skipper profile image
Skipper

Hi, I was on Azathioprine for about 10 years and took it with a glass of water immediately after my evening meal with no side effects.

However, you should keep covered and use factor 50 in the sun as it can cause skin problems but other than that I had no problems. Best wishes to you.

Mish-da profile image
Mish-da in reply to Skipper

Thank you so much for that. Hears hoping I’ll be fine too. Thanks for the tip re when to take it, as previous meds have caused awful tummy problems

Main1234 profile image
Main1234

Hi

My husband has GPA and has been taking AZA for over 1 year. He was on 150 mgs and used to take 2 in the morning and 1 at night after meals. He had no side effects and is now on 100mgs.

He does take care in the sun and has reduced his alcohol intake to national guidelines.

Don’t read all the side effects they are scary, everyone is different .

Good luck

Mish-da profile image
Mish-da

Thanks Main1234. Yes I’m determined not to read any certainty for now anyway. That’s great to hear he has no side effects. Hopefully I will receive some more positive comments in the days to come!

russellk3 profile image
russellk3

Hi Mish-da I have taken 150mg of Azathioprine for 3 and a half years with no adverse affects I also have gpa I’m now in the process of moving to Rituximab as Azathioprine now not as effective I take mine in the morning before breakfast

Hope you do well on it

Best wishes

Azathioprine is a maintenance medication, it’s not usually used to induce remission in GPA.

Have you requested a referral to the specialist Vasculitis Clinic at Addenbrookes?

Mish-da profile image
Mish-da in reply to

Hi Tynemouth

Yes I did but he became a little “twitchy” seemed keen to try another drug and wanted to also refer me to Dr Martinez who is ENT and also specialises in GPA vasculitis, still at WSH. I’ve looked him up and he’s has done a lot of research on GPA along side Dr Jayne at Addenbrookes so thought I’d see him first. Also been prescribed a short course of pred again which I’m not eager to have as it makes me an emotional wreck.

philtw profile image
philtw

Hi

I was on Azathioprine for 6 years with GPA although no side effects it didn’t really work so I’m now on methotrexate with no side effects even thought this drug is more powerful

Hope it all goes well for you

Mish-da profile image
Mish-da in reply to philtw

That’s good I’m a sensitive soul when it comes to most medication!

pigeon12 profile image
pigeon12

Hi Mish-da. I have been on Azothioprine since being diagnosed with GPA in 2016. I take it after my evening meal with water and have had no side effects. I have been gradually tapering the dose and my consultant says his aim is to get me off it within twelve months. I was very ill when I was first diagnosed and I've been left with some problems as you would expect but on the whole it doesn't interfere with my life too much. I would say that keeping busy and active and eating well are very important.

Chipper03 profile image
Chipper03

Hi Mish-da

I have EGPA. I’ve been on azathioprine for 10 years now, and take low dose steroid too. I’ve not had side effects, and not had a relapse, these have been such positives! My regular blood tests still show the disease is just under control, so the consultant is reluctant to reduce either drug. If I remember correctly I had to build up over some weeks, to the 150mg I take now. I take the whole dose with my breakfast. I cover up when in the sun, as the consultant always emphasises. Good luck with it, I hope it works just as well for you!

Mish-da profile image
Mish-da in reply to Chipper03

Thank you chipper that’s useful and very positive! What steroids are you on and dosage?

Chipper03 profile image
Chipper03

Prednisolone 5mg a day

Mish-da profile image
Mish-da in reply to Chipper03

Do you have weight issues with that dosage? I’ve started 10 daily for 2 weeks then reducing to 5mg for 4 weeks as last time I started them on a higher dosage it effected my mood etc. I’m hoping I don’t gain weight on the amount over a 6 week period.

Chipper03 profile image
Chipper03 in reply to Mish-da

No, this low dose doesn’t seem to affect my weight, fortunately

MAC12 profile image
MAC12

Hi there. I have been on azathioprine for 6 years for GPA. No side effects whatsoever and it has kept the condition in remission. I do take care when it's sunny - keeping covered up or using high factor sun lotion. I started on 150 mg daily but a year ago this was cut to 100 mg and more recently 50 mg. My experience of the drug has been excellent and I hope yours is too. Best wishes to you.

Gjw62 profile image
Gjw62

Hi I've been on azathiaprine for 10 months it's calmed my gpa down not 100% but I can function I get bad days but not as many as when on pred 👍

1943bonnie profile image
1943bonnie

I am still on Azathioprine but in remission. I have not had any side effects, and in remission.

I am so thankful. but do be careful of the sun wear sun screen when ever you go out. I wish you well. I took my meds at bed time and woke up just fine.

Stay positive and God Bless

Mish-da profile image
Mish-da

Thank you least I don’t need to worry about the sun now 🧤💨☔️!

zoe69 profile image
zoe69AdministratorVolunteerVasculitis UK

I have been on azathioprine for 4 years as a maintenance immunosuppressant for GPA. Minor side effects the first week taking it and nothing after that. I managed to get off prednisolone and I am now slowly tapering aza too.

Are you in remission? The immunosuppressants they have prescribed are usually given as maintenance medication when the patient is already in medical remision. Cyclophosphamide and Rituximab are usually the first choice.

Vasculitis is a serious illness and has to be treated correctly in order to have less impact on your body and quality of life. I hope you are being monitored very closely.

danerd1960 profile image
danerd1960

It kept me in remission close to a year & half- I didn’t have any bad effects just some hair thinning. Good luck hope you find relief.🌺

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