Ann Theresa

[Ann-theresa]

New to the site, diagnosed 18months ago PMR and GCA. Got Pred. Down from 60m a day to 5m a day, Struggling now and rheumatology nurse has advised Azathioprine. Has anyone been on this powerful drug, and can advise please?

[DorsetLady PMRGCAuk volunteer]

Hi Ann-Theresa,

If you have reduced from 60 to 5mg in 18months then that is very good going.

Now that you are on 5mg there are a couple of reasons why you are struggling -

a. It's a difficult level for lots of people, mainly because your adrenal glands should be working again after having been suppressed for all the time you have been on higher doses. You could ask for a Synacthen test to see if your adrenal are actually capable of working, and may just be a bit slow.

b. You might have reduced too quickly, and gone passed the level of Pred that is capable of controlling your symptoms. You say you are struggling, but what do you mean, are you just fatigued etc or have you got the GCA PMR pains returning. If just fatigue - then may be your adrenals, if latter -then maybe a flare.

GCA PMR usually lasts longer than 2 years, more like 4-6 years. Unfortunately I would think your Rheumy nurse is probably hooked on the 2 year scenario if she's recommending another drug. Is this to replace Pred or alongside the Pred?I have no personal knowledge of the drug so can't comment.

If you can give a bit more info on your pains etc, we might be able to give better advice. But for the meanwhile I wouldn't agree to another drug until you have got more information, and have worked out why you are struggling. It may not be necessary, it may just be a re-evaluation of your current medication and regime.

[piglette in reply to DorsetLady]

Azathioprine is another DMARD like Methotrexate.

[DorsetLady PMRGCAuk volunteer in reply to piglette]

Thought it might be but didn't want to say in case I was wrong. Thx for info.

[Celtic PMRGCAuk volunteer]

I echo DL's thoughts. You have done so well to get to 5mg from 60mg in just 18 months - many will be thinking "I wish"! Our adrenal glands produce cortisol at around the equivalent of 7.5mg of Prednisolone when well. This natural production will have been suppressed by the steroids and will need to get going again to take over. Until they do, we will have a shortfall in our bodies which can result in returning inflammation and symptoms. The way to avoid this scenario is to reduce in very much smaller decrements and by much slower tapering over a longer period of time, particularly from the 7.5mg point, remembering that each reduction becomes a larger percentage drop than the previous one. At the same time, you body is being sort of tricked into not noticing the steroid withdrawal! And best of all, the adrenal glands are being given plenty of opportunity to build up their natural steroid (cortisol) production again.

If it were me, I would prefer to increase my steroid than add in a DMARD such as Azathioprine especially as you have got as low as 5mg in such a short time. If you were comfortable at 7.5mg, then perhaps returning to that dose or a little higher for a while may be the answer. Good luck.

[PMRpro Ambassador]

I agree with the others. If you have got as low as 5mg in 18 months that is actually pretty good - and the only justification for adding in azathioprine would be if you had not been able to reduce the dose significantly without symptoms returning. Apart from any other consideration, there is little evidence it is useful in GCA and it is not recommended in PMR (and I have never heard of it being used for GCA). At present only pred works reliable for GCA although tocilizumab looks promising (if seriously expensive). There is a lady on the forum who probably had GCA and for whom azathioprine did make a difference to her pain - but now her diagnosis is for another type of inflammatory arthritis which probably would respond to aza.

I would be very reluctant - and another 1 or 2 mg pred for a few months more is less likely to have side effects than adding in another drug with no proven record.

[Gosingen]

I echo previous replies re having been able to reduce to 5mg in 18 months. Like Celtic said "I wish". I've had PMR/GCA now for 7 1/2 years and have never been below 8mg, currently on 10mg. I have tried MTX injections, Leflunomide and Hydroxychloroquine but not Axathriopine - ALL DMARD's. Had to come off all because of side effects. The only one that seemed to make a difference was the Hydroxychloroquine which I was on for over 6 months, sadly rare side effect presented and I had to stop using this drug. I agree with above comments in trying to increase your pred with a small amount and then use the dead slow reduction to see if this works for you. We are all so very different and it's very much a question of trial and error. I wish you all the very best.