should I go back to my initial dose of Pred ?

[Rubha]

Grateful for some advice here please . I was diagnosed with PMR in January (had a bad headache too) GP put me on 20mg of Pred and all symptoms disappeared as if by magic 😀almost immediately. After 2 weeks my doc reduced to 15mg which I stayed on for one month. In agreement with HU advice my GP is happy with very slow reduction Img monthly . After 3 months , I reached 12mg successfully. Now I have a return of symptoms though nothing like before. 5 days ago I increased (DL protocol) to 17mg but not much improvement. My query is should I go back to the 20mg ?

[DorsetLady PMRGCAuk volunteer]

If you’ve only been on the increase for five days, give it a bit longer. You can stay on the higher dose for up to 14 days without impacting on the subsequent drop back down.

But as you say the symptoms aren’t the same, then perhaps it’s not PMR - what are they?

[Rubha in reply to DorsetLady]

Thanks for your speedy reply. The symptoms are the same but much less severe. Sore shoulders and headache.

[DorsetLady PMRGCAuk volunteer in reply to Rubha]

Ahh okay.. a pretty typical flare then…

But as PMRpro says just monitor the headaches…

[Rubha in reply to DorsetLady]

Will do thanks. I feel much more informed with all the advice you folks give us here. Much appreciated. There is one excellent GP with knowledge of PMR and GCA in our practice (I live on the Western Isles of Scotland) but trying to get her is like finding the winning lottery ticket. …🥴

[DorsetLady PMRGCAuk volunteer in reply to Rubha]

Outer or Inner Hebs?

[Rubha in reply to DorsetLady]

Outer……and 26 miles away from Stornoway….so beautiful , calm (except for the summer tourists) and isolated. ❤️

[DorsetLady PMRGCAuk volunteer in reply to Rubha]

I think I’ve asked you that before -late hubby was posted to Benbecula in the early 1980s (gosh that sounds a long time ago) -so we spent 2years there..,

[Rubha in reply to DorsetLady]

Yes I remember you mentioning that. We are a bit more populated than Benbecula (RAF was it?) ......but lovely.

[DorsetLady PMRGCAuk volunteer in reply to Rubha]

No -in those days the missile range in South Uist was controlled by Royal Artillery personnel and named as such - the RAF took over later, now known (in a politically correct way) as MOD Hebrides. 😂🤣.

Beautiful on some days, others not so much when blowing a gale and could put one foot in front of the other.

The dog loved the beach walks though and the whole family the sea fishing on a summers evening..

[Rubha in reply to DorsetLady]

Lovely memories.....I didn't realise it hadn't always been RAF x

[DorsetLady PMRGCAuk volunteer in reply to Rubha]

The airfield on Benbecula has always been known as RAF Benbecula [build in 1942] and that’s where the main administration/accommodation is and is open to civilian aircraft. The ranges in South Uist and Kilda were controlled by the ARMY [RA] from the 1950s through until the early 2000s. Since 2003, it has been operated by the civilian defence company QinetiQ on behalf of the MOD on a 25-year partnering agreement, and name has been amended to MOD Hebrides.

[Rubha in reply to DorsetLady]

Thanks for that info…….all new to me 😀

[PMRpro Ambassador]

By "nothing like before" I'm assuming you mean "nothing like AS BAD as before"? Have you got the headache? Where? What other symptoms?

[Rubha in reply to PMRpro]

Many thanks PMR Pro, yes , I have a headache, stiff shoulders and top of legs. It’s all much much lower key but I had hoped that my increase of 5mg a few days ago would help. I suppose , I still have to accept our condition doesn’t obey rules 🥴

[PMRpro Ambassador in reply to Rubha]

You also must bear in mind that PMR can be the forerunner of GCA and GCA can cause symptoms considered to be PMR as well as the ones that are more a marker of GCA, with LVV (large vessel vasculitis) considered to be filling in the gap. I'm not sure the spectrum is quite as simple and linear as that though. It isn't outwith the bounds of possibility that you are hatching GCA so be aware and speak to your medical team if this gets worse or doesn't calm down at 17mg after a week to 10 days.

[Rubha in reply to PMRpro]

Thank you for that PMR Pro. My GP did say that GCA could develop . I have no visual symptoms and don’t feel the need to take a painkiller but will monitor things and see my doc if no improvement. Should I go back to my original 20mg though ?

[PMRpro Ambassador in reply to Rubha]

I would speak to a doctor - would you have enough pred to do that?

[Rubha in reply to PMRpro]

Yes, I have plenty Pred. I was on holiday in April and the doc gave me enough to cover the posdibility of a flare when I was away.

[PMRpro Ambassador in reply to Rubha]

Then I'd give it another few days - you really need to try to identify if this is a flare due to overshooting the dose you need currently or whether the disease activity is increasing, whether it is "just" PMR flaring or GCA developing.

[Rubha in reply to PMRpro]

Much appreciated. I have a phone consult with a GP this afternoon. One of the benefits of a small rural community though the disadvantage is we are nowhere near a large teaching hospital and Rheumy visits to our island hospital every 3 months. It’s not the GP who is « up » in PMR/GCA but I can ask. Your advice on this forum is invaluable.

[PMRpro Ambassador in reply to Rubha]

Not your practice that's on the GPs in rural practice series is it?

[Rubha in reply to PMRpro]

No....think we're even too remote for that 😅😅 Spoke to Doc this afternoon and like you said. Try a few more days and if no change up to my 20mg.