GCA/PMR question

[DinkiDie]

I had really bad attack of GCA few months ago but now down to 9mg Prednisone. Getting ache in neck some mornings but not sure if PMR returning or just old age. How do I tell the difference?

[DorsetLady PMRGCAuk volunteer]

Hi,

A bit more information might help us to answer-

When were you diagnosed, how have you tapered , do you have GCA and PMR?

PMR is not returning - it’s never gone away - it’s just been controlled by the steroids, so it sounds as if you’ve gone below the level you need - but to answer sensibly we require more info from you.

[PMRpro Ambassador]

I have to say the speed of your reduction is mind-boggling! You say your rheumy's initial taper resulted in a relapse of the GCA symptoms - sounds as if he didn't learn! In one of your replies you say you are reducing 1mg every few days. If that is so, then you have no idea whether the dose you are at is still enough to manage the symptoms well and if you do get a return of symptoms then you have no idea where it went wrong.

The underlying cause of the GCA and PMR symptoms is still there, the pred doesn't cure it, it is a management strategy for the symptoms to allow a better quality of life. But you have to administer that management strategy carefully.

[DinkiDie in reply to PMRpro]

Thanks for your reply. What I meant is that instead of dropping 5mg each week as Dr's taper sheet, I slowed the taper down and dropped 1mg each day until I got to the recommended dose for that week & then I stayed on the recommended dose for 2 weeks instead of 1 week. Since I got to 12mg per week I have had some neck pain but no symptoms of GCA or shoulder/hip/pelvic pain. I have bone spurs in my neck so can't tell if they causing the pain as they did before I got PMR or if it is PMR returning. I worry that GCA could be simmering along undetected as the dose of Pred gets lower. What do you think? Pred causing me all sorts of other issues like diabetes/blood pressure/cushings/thrush none of which I had before Pred so trying to get off it slowly but surely

[PMRpro Ambassador in reply to DinkiDie]

That's a relief - but 5mg at a time is still a BIG jump when the recommended drop is not more than 10% of the current dose at a time.

Pred hasn't cured anything - the GCA is still simmering away as you put it and all the pred does is manage the inflammation caused by the autoimmune disorder underlying the GCA so that it doesn't cause pain or interfere with the blood supply to the optic nerve in particular which is the greatest risk. You are looking for the lowest dose that does that effectively - and since experience shows that even 1mg can be the difference between success and failure, dropping 5mg at a time does make it very easy to miss the dose you want and making a 5mg drop every 3 weeks isn't allowing enough time to be sure that the new dose is still enough.

Pred does cause issues with weight gain and potentially steroid-induced diabetes - both can be improved a lot by cutting carbs drastically. The Cushing's syndrome is partly a reflection of that weight gain - I was also Cushingoid on one form of steroid but when I cut carbs I lost 35lb in weight and all my doctors now say that there is no sign I am on steroids.

We do all want to get off pred and that IS the idea in the long run. But in the shorter term the aim is not zero, but the lowest dose that works - and you will need that as long as the underlying autoimmune part is active. I have no figures for the time for that for GCA, there are figures for pred required for PMR, but judging by people on the forums over the past 12 years it is usually maybe 3 or 4 years although I do know a few for both GCA and PMR who were off pred in 2 years. If you rush at the reduction you do run the risk of a flare and needing to go back to a much higher dose to control the symptoms again. That is always our concern when we hear of people reducing fast.

[DinkiDie in reply to PMRpro]

Thanks for answering again Yes I agree I have tapered too quickly (from 50mg to 9mg in 18 weeks) but the specialist wanted me to do it in half that time! I can't argue with him as he gets very abrasive and he is the only one in our town. Luckily I have been able to get Pred off him and the GP and neither have questioned how much I have used or how slowly I've tapered. I will stay on 9mg now as listening to you I can see that going lower in the near future could cause a flare and that is the last thing I want. I have resisted taking Methotrexate as well as Pred but maybe I should start taking it now I'm this low. I've heard here on this forum that it has mixed results, what is your opinion? Cheers and thanks again

[PMRpro Ambassador in reply to DinkiDie]

There is study evidence that shows GCA is still active after 6 months of high dose pred (over 20mg). It would be different if the pred cured the inflammation - but it doesn't. GCA is a chronic condition and takes time to burn out and go into remission - and it is more like 2 years than 2 months!