Rheumatologist consultation since my original post

[Flivoless]

Today I have, finally, received a copy of a letter from my Rheumatologist, sent to my GP, following my consultation on the 1st July. Under “Diagnosis” she has written; ?Polymyaglia Rheumatica, ?Ploymyalgic Arthritis. So, apparently, the jury is still out! Under “Medication” she has put; 1. Prednisolone 20mg daily to reduce to 20mg / 15mg alternate days for two weeks, then 15mg daily for two weeks, then 15/10 mg alternate days for two weeks then 10mg daily thereafter. 2. Colecalciferol 1000 units available over the counter. 3. To optimise dietary calcium via Edinburgh Calculator online. 4. Alendronic acid 70mg a week. 5 Omeprazole 20mg daily. Later in her letter she says “I suspect that the persistence of his symptoms and his requirement for higher dose of Prednisolone indicate a polymyalgic onset of rheumatoid arthritis, although X-Rays today of his hands, feet and chest were, thankfully, unremarkable. (now that sounds awfully like a guess to me!) I have therefore encouraged him to reduce the Prednisolone but suggested that I would favour the introduction of Methotrexate (Hmm?) as a steroid-sparing agent, particularly in the run-up to the autumn and the likelihood of a further Covid vaccination programme , as steroids can reduce the immune response. I have given him a prescription for Methotrexate 15mg a week and if he decides to take this having reviewed information available on the Versus Arthritis website, I have given him forms for blood tests at two, four and six weeks”. Now for someone that, luckily, has hardly had to take a pill for anything, that sound like an awful lot of them and, at the moment, based on nothing more than guesswork. I still haven’t seen a copy of the results of the plethora of blood tests done just after my consultation and will not make a decision on anything until I have seen them.

[PMRpro Ambassador]

" as steroids can reduce the immune response" - and MTX doesn't????? The effect of MTX on flu and pneumococcal vaccinations is known to suppress the response to them. And there is some evidence that MTX isn't good for the Covid vaccine either. I'd rather take one rather than two immunosuppressives unless there is strong evidence ...

We know plenty of people who needed 20mg at the start who never developed an inflammatory arthritis ... Wait and see I'd say.

But was that letter at least recognisable as the consultation you had with her?

[Flivoless in reply to PMRpro]

Sort of. She came across as very anti Pred but I had understood that she wanted me to intersperse Pred and Met on a daily basis. Maybe I misunderstood or I had just glazed-over!

[DorsetLady PMRGCAuk volunteer]

“Later in her letter she says “I suspect that the persistence of his symptoms and his requirement for higher dose of Prednisolone indicate a polymyalgic onset of rheumatoid arthritis, although X-Rays today of his hands, feet and chest were, thankfully, unremarkable. (now that sounds awfully like a guess to me!)”

So is she saying you need more Pred for RA? Steroids aren’t used for RA….but MTX is…..has she considered that you may have PMR and that 20mg is not enough? Sorry you can’t answer that! Not sure she can!

Good luck with the tapering regime, and what happens in future?

You may or may not require the Omeprazole, depends how robust your digestion is…many manage by taking their Pred with good quality yogurt.

AA, hold off until you have had a DEXA scan and it’s proved you actually need it. You may find Colecalciferol is enough- and it should be on prescription.

MTX - would put on hold until it is decided whether you have PMR or RA, or whatever!

Any input from GP?

[Flivoless in reply to DorsetLady]

I was prescribed Omepraz at the onset but haven't felt the need to take any - luckily. I will definitely hold-off the Met until someone can convince me what my problem actually is. I don't think 20mg of Pred is excessive for someone my size, 1.89 tall and 95kg (not that far off from when I was regularly playing rugby - ah, those were the days, I can almost remember them).

[DorsetLady PMRGCAuk volunteer in reply to Flivoless]

You’ll be watching the 🦁 🦁 🦁 then!

Think you need a bit more time to really know what you have.

[Flivoless in reply to DorsetLady]

Not looking too good in SA. 14 players (not sure which ones) diagnosed with Covid. I've already notified Warren that, if all else fails, I'm available.

[DorsetLady PMRGCAuk volunteer in reply to Flivoless]

I think that’s SA players, not us… but I have a son (definitely too unfit) and a grandson (fit but too young) who would join you, if possible!

[PMRpro Ambassador in reply to Flivoless]

Maybe there will be a similar outcome to the England ODI cricket team - the spares seem quite good ...

[Flivoless in reply to PMRpro]

If only. 30 years ago, well maybe 50, I might have had half a chance but then again I've always been a bit of a dreamer.

[PMRpro Ambassador in reply to Flivoless]

No wonder you needed 20mg - size DOES matter ...

[Flivoless in reply to PMRpro]

Yes indeed and the Rheumy did have me weighed and measured.

[LBM1953]

Good luck with getting a Dexascan quickly. NHS waiting list at my local hospitals 6 and 12 months. Decided to go private and managed to get my GP NHS referral Friday last week (reputable companies won't do it without a referral) . Phoned yesterday and they managed to squeeze me in to a facility today (50 miles away but hey ho). Cost is a £110.