PMR ECLIPSED BY OTHER AILMENTS

[51Highland]

Aged 70, I have been on Prednisolone for PMR since June 2020, having been started on 15mg. I tapered down to 2.5mg last June, but have found it consistently difficult to taper below that and am currently sitting at 3.5mg which has been keeping any flares at bay.

Determined to try and lead a normal life I went on a ski trip in late January where I broke my collarbone on 26th - so effectively that I had to have surgery on 8th February to 'fix' the bone. Those of you who have experienced this kind of episode will know how uncomfortable it is, yet throughout the whole ordeal I have not had so much as a whiff of PMR pain or discomfort. In fact I had forgotten all about PMR (while still taking the daily pred, of course). I expect the collarbone to be back to normal in about 4 weeks or so and I wonder if my PMR will take up where it left off. I am not so incautious as to instantly drop the dose in a misplaced sense of security. But I am fascinated by the human body.

[PMRpro Ambassador]

Oh well done! For some reason, there have been a LOT of ski accidents this year everywhere I think - been awful here and it isn't for poorly prepared pistes!

Do you remember the "transferance of pain" theory?

[51Highland in reply to PMRpro]

Thank you PMRPro. Now you mention it I do and have refreshed my memory by looking it up. It makes sense.

[Longtimer in reply to PMRpro]

Think I will have to look that one up, there are plenty of places I would like to transfer all this pain!

[SheffieldJane]

It does sound as if your PMR is in remission, I do hope so! My concern would be my Adrenal Function, although your accident and subsequent operation didn’t throw up any issues, thankfully. However it might be an idea to have a morning cortisol test, just to ensure that you are able to meet your own Cortisol needs. The symptoms you experience when trying to reduce further may indicate an adrenaline wobble. I would definitely trade places with you. I suspect that you are looking at an open door. Good luck!

[51Highland in reply to SheffieldJane]

Thanks Jane. Fingers crossed. I do seem to discovered the silver lining to this cloud.

[123mossie]

your post made me wonder what sort of taper you are on? The lower the dose the slower you must go as you taper. I used Dorset Lady’s dsns which reduces by 1/2 mgm over 5 weeks. The other advantage is that it allows the adrenals more time to get going.

[51Highland in reply to 123mossie]

you’re quite right 123Mossie. That’s why I’m still lingering on 3.5mg having successfully got down to 2.5 last June. The only point I was making was to register my surprise at the (probably temporary) disappearance of the PMR discomfort when the fracture pain kicked in. Now that the break is healing I’m prepared for the re-emergence of PMR and the resumption of very slow and careful tapering.

[123mossie in reply to 51Highland]

yes, strange. Fingers crosed it stays quiet!

[Exflex in reply to 123mossie]

definitely lower slower. I’m also using the DostetLady slow taper, but only 1/4mg every 5W. Currently into the second week from 1.75 to 1.5 I’m sure my body can ‘feel’ even a 1/4mg initially.

So close, why would I dream of rushing! But fingers crossed.

[51Highland in reply to Exflex]

haha! I totally understand your caution. I did a long (1400 miles) bike ride in June last year at 2.5mg daily and PMR was definitely out of sight. Bolstered by this I plunged to 1.5 a few days after my return and….pow! Big mistake.

[123mossie in reply to Exflex]

so true! Sneak down hoping the pmr dragon doesn’t wake up. It worked for me eventually, been off pred 5 months now .

[51Highland in reply to 123mossie]

you fill me with hope. I shall wait until the dragon is looking the other way …

[Exflex]

…the guidance is 10%, obviously 2.5 to 1.5 is 40% …

I hope you’re stabilised again.

[51Highland in reply to Exflex]

thank you. We shall see.

[Exflex]

I can’t talk for others… but I get a bit nervous even on the very low reduction rate that I’m on. I don’t see that I have much of an option, other than going even slower.

I think it’s been discussed previously with certain members saying something along the lines that it took as long to get from 1mg to 0mg as it did from 15mg to 1mg. Could be wrong though.

One GP said when I was on 3mg after two and a half years on Pred “I don’t think you’ll ever get off steroids”.

[DorsetLady PMRGCAuk volunteer in reply to Exflex]

I've said before it took me as long to get from 10mg to zero as it did to get from 80mg to 10mg....🙂