Azathioprine

[Susanmod]

I started off on 40 mg in April with GCA and currently just on 10. Have had a couple of flares going back up to previous dosage. About 5 weeks ago not feeling right either headache and went to hospital appt. I saw a nurse on the clinic who kept running in to dr whom I did not see and she told me they don't like ll g term use of steroids so they would like to try me on azathioprine. I had bloods taken. Today I went back to clinic thinking I was seeing consultant but it was the nurse. I asked questions about drug having read the leaflet and was told to stay on 10 of steroids and start on new drug 2 weeks x 25 mg and 2 weeks on 50 mg. I have to have blood test every week and go back to hospital once a month. In addition I was told to get pneumonia jab done ASAP and managed to get appt on Monday. Would it be wise to start this drug after Monday as read you shouldn't have jab while taking it. I would be very grateful to hear from anyone taking it and he effective it is in the treatment of GCA . I just felt I didn't get enough information from them after asking questions. Thanks

[Runrig01]

I was on Azathioprine for 2 yrs for GCA type symptoms and it did help to some degree. Pneumonia vaccine isn't live so is safe to have ev n whilst in Azathioprine and Prednisolone. Azathioprine takes a while to get in the system, so I would just start straight away. 25mgs is a low dose and won't have to much of an impact on your immune system. I was taking 150-200mgs daily, and still had all my vaccines with no ill effect. It takes 6-12 weeks to show its full effect, I hope you find it helps. Runrig 😃

[PMRpro Ambassador in reply to Runrig01]

Has Sarah said anything about the aza and the AS diagnosis? I think it is sometimes used there so maybe it has been helping that side of the pain???

[Runrig01 in reply to PMRpro]

No but it was no longer working. She chant me to Methotrexate 6 weeks ago, which is helping the peripheral pains of AS. Her colleague started me on Arcoxia which is licenced for AS till biologics sorted. It is helping with the stiffness. Hope you are doing ok 😃

[PMRpro Ambassador in reply to Runrig01]

Right - just wondered.

Me? I'm fine well as fine as one can be with PMR!

[PMRpro Ambassador]

I know runrig found it it helpful - but it isn't generally used in GCA except by some doctors in the hope it will act as a steroid sparer - and there is little evidence it works. It certainly doesn't work in GCA on its own.

If your diagnosis was definitely GCA and was only made in April this year - then to be talking about being worried about "not liking longterm use of pred" when you are already down to 10mg makes me wonder if a) the doctor was really aware of what your diagnosis is (i.e. did the nurse make it clear, does she know all about GCA?) and b) if he was, if he knows anything about GCA. And personally, I absolutely would NOT take azathioprine without having discussed it with a doctor who I knew was fully aware of my diagnosis of GCA and the standard protocols for how it is managed.

The mainstay of management of GCA remains corticosteroids at present - that may change in the next year or so - but for now it is prednisolone. The usual expectation of use of pred in GCA is at least 2 years - not under a year. Usually doctors would take a lot longer than that to get from 40mg to 10mg, no wonder you have had flares.

I have PMR, the only option for that is also pred, and I was at 10mg for the first few YEARS, not months. No-one was particularly bothered. I had a flare in the spring - I've only jst got back to 10mg. No-one is bothered. There is no choice.

No, in other rheumatoid diseases they don't like keeping patients on pred for longer than necessary. But that is because there are alternatives which also work. They don't in GCA, it is pred or pred.

This

rcpe.ac.uk/sites/default/fi...

is a reasonably simple article on managing PMR and GCA from a top group in the UK (Bristol at the time) and they take nearly two and a half years to wean patients off pred. That doesn't strike me as "not liking long term use of pred".

I think I would ask for a lot more discussion and evidence they are following good practice guidelines for GCA - because if they are, they differ from any I have seen so far.