Phone call from the Doctor.

[IdasMum]

My doctor called me last evening to report back on his call to the rheumatologist.

He says that my diagnoses is not confirmed and I should drop today to 17mg Pred and then in a week drop to 15mg. Then I should have the blood test and MRI scan x'd by the rheumy.

I understand of course that I need to be on the right treatment for whatever I have but am unhappy to be coming down faster than planned and risking being in pain again. I am just hoping that now the tensions and stress of the last few weeks have subsided, I won't actually be in as much pain as I was.

Annoyingly I know that in 2 weeks time I will be down to 15mg and it will be August here which means many people are on holiday and I won't get a scan until Sept....nor a follow up appt with the rheumy. Am very tempted to go 19/18/17/16 over next 4 weeks which will still take me into August.

[Celtic PMRGCAuk volunteer]

I'm surprised that your Dr has said that your PMR diagnosis "is not confirmed", but hasn't come up with an alternative. I would have thought that if your present steroid dose has relieved the bilateral pain in your hips and shoulders that would be taken as confirmation of diagnosis. In the circumstances, you can only go along with him and hopefully you will be lucky and not see a return of the pain. You say you are tempted to go 19/18/17/16 rather than straight to 17 and that sounds like a wise move - at least you can stop at any stage if you find the pain worsening and continuing to build. Hope it works - good luck.

[PMRpro Ambassador]

There is no "confirmation" for PMR - it is a clinical judgement based on symptoms, clinical history and response to pred. It is fair enough to say "not convinced" but then another option must be suggested or plan of action for further investigation offered.

I also think the idea of going slowly down is a good one and I wish you all the best.

[IdasMum in reply to PMRpro]

I think the further plan will be based on the results of the blood test and MRI.

I am 99% sure I have PMR however my doctor says if we are to be treating you with steroids for a year or more it's important to rule out other possibilities. Remember they are French and my doctor's English is good but there will be small subtitles that can get lost in translation.