Down to 6mgs and achey shoulders…

[Phoebenooby]

Started on 15mgs January 24. Now down to 6mg, had a flare at 6.5/7mg in August and doubled the dose for about a week and then settled for 7.5 and have come very slowly down by .50 or .25. to 6. Been on 6 for about 8 days and today and yesterday have sore shoulders and hips. Not awful, heavy legs when walking (I have blocked femoral arteries, so I get pain in my legs from that so unsure whether the pain is from that or PMR. Should I see how it goes? Take an extra .25 for a day or two? Is it adrenals? Thank you

[DorsetLady PMRGCAuk volunteer]

I think as we may have said previously you have been a on very quick taper to be.. and as your body is flaring again, it’s telling you you’ve gone too low. You may have been tapering quite easily at higher doses..but now you really need to stop and get your one back under control.

Sounds as if a week at the higher dose in Aug didn’t cut the mustard so, follow the protocol again - and if necessary at the higher dose for 7-10 days, but 14days would probably be better-

healthunlocked.com/pmrgcauk...

Back to 7mg.. stay there for at least a month before you think about tapering again.

Although you are in the range for adrenals to wake up, it sounds very PMR-ish to me.

[SnazzyD]

If it were me, I’d be thinking that it isn’t a case of flare protocol and quickish back to where I was assuming a reset had been achieved and a continuation of the plan. I’d be looking more at a longer term increase and much slower reduction. This is because your diagnosis was only 9 months ago and you have quite likely reached your level for now rather than just having had a blip.

[Orange_2022]

Getting below 7mg took me some time and I feel I'm a fairly mild case of PMR compared to some. I started on Pred in September 22 and now on 3.5mg. The lower I get, the slower it is for me. Hope all goes well for you.

[Zebedee44]

Under doctors advice I tapered as rapidly as you have until another (younger) GP in the practice identified that I had gone below my own body’s need for the steroid. The initial information I had been given by my doctor was the classic two year myth with standard taper programme. At diagnosis after months of pain two years seemed a very long time but of course I thought I was doing the right thing and hey ho, normal service could be resumed. How wrong was I?

After six months following the plan I flared badly at 8/7mg and returned to a higher dose (13mg) and started a slower taper, as I had learned to do from this forum. When I reach 8mg again many months later I stayed there for four years!

It is now eight years later and I am at a low dose of 3.5mg and likely to be stuck here for a while. I often wonder if the PMR would be in remission now if I had been better advised and been more of a tortoise and less of a hare. I am still in a reluctant relationship with my PMR but it is what it is and there aint much I can do about it, as I’m afraid you are finding.

[PMRpro Ambassador]

All been said - you are hovering around the dose you need, the dose you are looking for, the lowest effective dose. But you are hovering just below the surface - you are too low. You have actually got to 7mg very quickly - the average time to get from 15mg to 5mg is 18 months so you are well ahead of the curve. It doesn't matter what approach you try, you will not get below that lowest effective dose without a flare due to the inflammation that isn't being controlled. And if you try to ignore it all that will happen is you will end upi back where you started, with a flare than means you need MORE pred than if you had accepted you aren't yet ready for under 7mg.