Everywhere hurts

[Gurufjm]

Hi advice pls. Started on 80 mg Pred in Sept 2019(suspected GCA) and have just finished my last Pred (1mg ended 31/8/20). Everywhere hurts, hands, feet , arms . Not been referred to a Rheumatologist but I am wondering if I should be or should I just ride this out and see what happens? Thanks

[SnazzyD]

Oh dear, I fear you have been expected to reduce far faster than this autoimmune condition typically takes to burn out which is usually well over 2 years. Under a year to be off Pred for GCA is not realistic and I suspect your inflammation has built up again and you risk a flare and starting again. We’re you given this taper plan? Does your doc know anything about PMR or GCA or point you towards up to date information?

[Gurufjm in reply to SnazzyD]

Thank you both. My GP set the taper plan however I haven’t seen him/ spoke. With him for 6 months and I do not know how Ip to date he is. On reflection the pain started at about 4 mg but I put that down to the effects of tapering as I haven’t been diagnosed with PMR. I think I may go and see an expert. I live in Dorset can anyone recommend a Rheumatologist?

[SnazzyD in reply to Gurufjm]

Here are some latest guidelines to have a look at. It’s a bit long but you can scroll down to the box with treatment programs but as it says on the tin it is a guideline and it doesn’t fit all. I had no flare ups but it was about 2.5 years before I got to 1mg.

academic.oup.com/rheumatolo...

The other thing your doc didn’t think about was your adrenal function. After high doses for so long your adrenal glands switch off and at the bottom end of the dose range it has to be taken very slowly so your reduction can match your reviving natural cortisol production. If you out strip it, you can feel awful. How slow you reduce from about 7mg is very variable but it is often troublesome for many.

Re your symptoms now, GCA and PMR are part of the same condition which is a vasculitis, so it can go anywhere in theory. Very roughly, if you have GCA it is concentrated in the upper body and head arteries, which is why GCA people often have shoulder and neck pain. With PMR it is mainly in the arteries lower down affecting the skeletal muscles and their attachments. Your diagnosis can have one name but it can become a mixture of the two. You can develop PMR symptoms at any point and vice versa but it is more common for GCA become PMR as well. It does sound as DL says, that your illness is alive and kicking and you need proper treatment with enough Pred to avoid complications.

You may find, like countless others with this condition, that you have to become your own expert and either find a good doctor or demand up to date guidelines are used.

[Gurufjm in reply to SnazzyD]

Thank you very much .... looks like I am back to GP initially

[DorsetLady PMRGCAuk volunteer]

Ditto to SnazzyD comments..and no, don’t try and ride it out..your GCA is still much alive and needs treating.

[PMRpro Ambassador]

At what stage did the pain return? Is any of it GCA-like?

GCA and PMR are not illnesses that you take a dose of pred and taper off to zero and that is it. Only 1 in 5 patients are able to get off pred in under a year - so the likelihood your GCA/PMR has already gone into remission is relatively small. And if there was ever any question of GCA your GP should have referred you then. If this appears to be the GCA aspect reviving then yes, you need referral - but how that would work at present I don't know.

[Gurufjm in reply to PMRpro]

Thanks. I think I need to see a specialist now -my GP was fantastic but was quite keen to get me off steroids

[SnazzyD in reply to Gurufjm]

They often do because they blinker themselves and only look at the side effects without thinking about why they work and the consequences of not having them. I haven’t yet met a doc who has seen diabetes and weight gain as controllable and not an inevitability. I don’t think many are interested in PMR because it is largely a condition of the ‘elderly’ who for some reason should put up with it because they are ageing. GCA on its own is rare. Therefore there doesn’t seem to be much of an impetus to keep up to date as evidenced by the same old lines trotted out that came from old research. Sprinkle in some arrogance and the patient has a problem. Saying that, there are some absolute gems out there.