Azathioprine - anyone had experience of this?

[Phoenix51]

I’ve tried three times to reduce Pred dose ( for GCA) and seem to falter at 12.5mg. Consultant has suggested azathioprine as a steroid sparer but I’m wondering why he would choose this over one of the others that I have seen discussed on this forum. Has anyone had experience of this drug?

[PMRpro Ambassador]

I'm at a loss as well - there is no medical literature to support its use in PMR or GCA. It IS used in other disorders as a steroid sparer.

However - if I understand your past posts correctly, you were diagnosed with GCA in JANUARY 2020? To have got to 12.5mg after under 9 months is pretty fast and I think your doctor is just being impatient.

[SnazzyD]

Ditto what PMRPro says. It does annoy me when people are rushed down the Pred ladder, they get a flare and are then told they are a tricky case or are atypical. Also, the first year is the worst time for flares, so why rush it? I don’t know how long it was before you got to 12.5mg the first time but just for comparison I had an uneventful journey to 12.5mg but it took me 9 months. I gather that was pretty good going too.

[MrsNails]

One of my previous Consultants mentioned this drug as an option for me; before prescribing azathioprine, your doctor will need to order a blood test for an enzyme called TPMT, also known as thiopurine methyltransferase; enzymes are proteins in your body that can help to break down certain substances or chemicals.

Here’s some more information on Azathioprine

bad.org.uk/shared/get-file....

versusarthritis.org/about-a...

Although l had the necessary enzymes the drug l was given was in the end was in fact Methotrexate. I would now be unable to have Azathioprine because l’ve had an area of Skin Cancer (Bowen’s Disease) which has recently been reclassified as Pre Skin Cancer but my Dermatologist said l still should never take it.

All these drugs have their Side Effects & Benefits so l would always recommend good research.

Best Wishes

MrsN

[Phoenix51]

Thank you all for your replies .. I have since found some mention of this drug in the treatment of GCA eg.

rcplondon.ac.uk/file/1597/d...

and

openrheumatologyjournal.com...

and

journals.lww.com/co-rheumat...

But I also agree with your thoughts that my relapses may be more to do with rapid reduction of Pred although I had thought that 9 months was quite a long time to get to 12.5mg. I realise that those of you that have replied are very learned and experienced and I value your opinions which I will discuss with consultant on Friday, by then he should have my PV result.

[Cally55]

Yes, I have both GCA and PMR since 2016. I've been taking it for nearly 2 years after failing with methotrexate and leflunomide because of side effects. I was stuck on 15mg after a spell of being stuck on 9, then a flare. I found that it did help and very slowly, 1 mg a month got down to 6.5.

A couple of months ago I had a bout of pneumonia and had to stop it. The hospital put my prednisolone up to 13mg and on discharge set me to reduce by 1 mg a week back to 6.5ish. The rheumatologists restarted azathioprine after 3 weeks, should have been 2 but it took a while to organize. After another 2 weeks I noticed the difference, the PMR ish symptoms of steroid withdrawal have stopped and the final reductions to 6.5 have been easy.

I know that it could have been easy to get the prednisolone down again after only a week or two on the higher dose anyway but the chest doctors seemed to prefer it this way and as it has worked and I feel fine why should I complain.

A downside is that it lowers one's immunity further and also puts one in the shielded group of people vulnerable to Covid-19.

It was prescribed by the doctors at Oxford originally after I was referred by my local hospital rheumatologist who doubted if I had GCA. Although an ultrasound was negative, I was on 11mg of prednisolone at the time, he confirmed I had GCA from symptoms. I was anxious to get off prednisolone as I have had some nasty side effects, the most devastating being osteoporosis which has caused 4 vertebral fractures.

[123-go in reply to Cally55]

I'm so sorry to hear of your difficult journey. You have certainly had many ups and downs and I hope you have more ups as you go forward.

[Cally55 in reply to 123-go]

Thank you, at the moment I feel great, have been able to garden and walk the dog - fingers crossed that there are no more nasties round the corner!

[123-go in reply to Cally55]

That's good progress! Long may it continue.

[Cally55]

Yes and no. I have just had a bout of pneumonia which required hospitalization. However that may have been because I couldn't get to see the GP in person. First I was directed to the nurse specialist who said it sounded like seasonal flu,then 3 days later I got a phone consultation with a GP who said the same but to ring back if no better after the weekend or call an ambulance if got worse. A day or so later my husband did just that! So infection yes but did it really need a week in hospital? I did have a bout of sepsis when on prednisolone alone a couple of years ago.

Generally i'm happy with it as I feel fine and don't get too many pred withdrawal symptoms.

Your other question, I take 150mg of azathioprine, I weigh about 62kg.

[Phoenix51]

Thank you all for your replies, really helpful. Good luck with your individual journeys

[Sallyaches]

I have been taking Azathioprine for PMR and I have been weaned off prednisone. I am now slowly reducing the Azathioprine. The initial dose is usually roughly twice your body weight in kilograms. For me it has been a better drug than Methiotrexate, it does not involve injections but you do need regular blood tests. I had a few side effects initially but tolerate it well now. You do have to be carefull as your immunity is very low