Finally it's been Disgnosed as PMR even tho I'm "too young"

[Buttonshutton]

Hi all. Some of you know had some anxiety waiting for a scan and pain having to wait for it on zero pred etc.

had the results today. It didn't show any malignancy or vasculitis but showed uptake in shoulders hips and pelvis In keeping with PMR.

I'm to keep taking the 10mg as agreed I could after the scan and gave bloods prior to our next apt in March.

I've emailed referring to this group and stating that with respect 10mg doesn't work indeed 15mg never did but I tried that. But no as before only 20 works (25 last summer but seem to function on 20 now).

I've said I intend to follow dead slow taper which I'll print off for her and hope we and my GP can all woek together as I choose quality of life over getting off pred quickly. Whilst I respect and am grateful for her decision to scan me to eliminate other things I have followed doctors orders for a year now and am no further forward so can I please try it my way now we know what it is. I went on a bit too about bloods don't reflect the true story as she said she'll be in touch if bloods show things need to change before my next appointment. I suspect she was gonna say if they are lower lower the dose. I've said the patients pain should be the marker. Not the blood levels. Anyway. Relief of sorts but feel I'll be battling to do it my way. Thought would update you. Thank for all for teaching me so much this past year. Least I feel armed with knowledge to fight now !!

[PMRpro Ambassador]

At least you now have the evidence that it is PMR!!! She was so keen to have it - to prove her point no doubt - so now it has proved yours.

Has she at least got the bottle to admit she was wrong? That PMR may not be a respector of the calendar and birthday candles? And that in younger patients it frequently doesn't fit their precious textbooks? And listening to the patient really is a good idea.

I do hope you can get things under control - it is likely to be harder after being forced to reduce to zero for the scan,

[Buttonshutton in reply to PMRpro]

Candles. That made me chuckle. Thank you. You gave me the confidence to self advocate. My email in full to her is quite good I think. Hopefully she will take notice. Too right not text book. It's all day stiffness after sitting or inactivity amongst other things.

[PMRpro Ambassador in reply to Buttonshutton]

Absolutely - that is something we have managed to get through to one set of rheumies in a research group. Morning stiffness my foot - morning can't move at all more often and stiffness that lasts all day, worse after sitting. Prof Mackie and co have managed to accept that!

[Buttonshutton in reply to PMRpro]

That's amazing. We don't make this stuff up do we.

[PMRpro Ambassador in reply to Buttonshutton]

We don't!!!

[123-go]

Good for you, Buttonshutton! Having the confidence to challenge and to put your own case forward based on what you've learned is half the battle.

[Buttonshutton in reply to 123-go]

Thank you. You guys gave me the confidence so many thanks

[Judyliz]

I am in awe at how much pain and discomfort you have had and the control and patience you have shown. It sounds like your correspondence with your doctor was a lesson in diplomacy. I really do hope all is a smooth, careful and slow journey for you.

[Buttonshutton in reply to Judyliz]

Kind of cut my nose off went along with it to prove my point but it hurt. Thank you !

[jinasc]

Knowledge is Power and always remember you are a person as well as a patient.

If another one with PMR comes along - hopefully lesson learned.

[Buttonshutton in reply to jinasc]

Thank you. Good way to think !

[Jontie]

At 53 I thought I was too young as well. And I'm a bloke. Both of which led to the consultant to diagnose me with "atypical pmr"

[Buttonshutton in reply to Jontie]

So unfair to be dismissed on age AND gender. I was told I was atypical too because it was T just in the morning. Frustrating. Hope you are getting the help you need now

[PMRpro Ambassador in reply to Jontie]

If he's counting male as being atypical - that immediately includes about a third of patients!!!!