still waiting

[Suffererc]

further to a oreviose post….. AskMyGP 11/1/23 . Asked GP if I could increase my dose of Pred . Having problems getting out of bed /chair. My GP asked me to message her if having a flare. Had blood tests 5/1/23 and they forgot to do the PMR blood test so arranged separately. Now results been back over a week . Another GP recommends I stay on 2mg Pred ……. Then what …… haven’t heard from about my request to my GP . Looks like request has been completed. Did up to 4mg for 3 days and now able to get up from chair. Back down to 2 so as not to upset them, but why , I feel abandoned.

[PMRpro Ambassador]

They haven't got a clue have they!!! If you can't get out of a chair and you could before - you are flaring ...

If the other asked to be told if you were flaring - I would go to the dose where I could function and if they don't like it, they can lump it.

Do you live alone?

[Suffererc in reply to PMRpro]

no I don’t live alone. I have OH. I can’t work out what the surgery are doing. My GP asked me to message her but don’t think she has been told because someone else picked up. All they want is OFF PRED.

[PMRpro Ambassador in reply to Suffererc]

You'll get off pred when the PMR is ready, It isn't yet, it is winter and your adrenal function probably isn't fabulous. When will they learn?

Being alone is a damn good reason to quote for going up a bit ...

[Suffererc in reply to PMRpro]

but …… my regular GP doesn’t think I have PMR anymore but doesn’t say what she thinks I have. Perhaps she doesn’t want to deal with me anymore and handed me over. Am slowly loosing confidence in myself. But this new system is not working but the surgeries love it.

[PMRpro Ambassador in reply to Suffererc]

WHY doesn't she think it is PMR "any more"? If it was PMR at the start it is likely to be PMR now - whatever some of them think, it may be a wrong diagnosis but it doesn't really morph into something else. Just because it lasts a bit longer doesn't mean it isn't PMR - if it is still responding to pred, it is most likely PMR.

[Suffererc in reply to PMRpro]

Arthritis falls of her lips more often than not. 😊

[PMRpro Ambassador in reply to Suffererc]

But WHY? Is PMR beneath her?

[DorsetLady PMRGCAuk volunteer]

Just be careful dropping back to 2mg - there’s a heck of lot of difference between that and 4mg. GP may not think so, but those with PMR know there is!

Think you need to contact again if they haven’t answered your specific question.

[Suffererc in reply to DorsetLady]

I was on 1mg when flared. Put myself back to 2 while waiting for Ask My Gp response . Then I was told to stay there. My request was to go higher, but that seems to have been ignored.

[DorsetLady PMRGCAuk volunteer in reply to Suffererc]

Okay, also agree with PMRpro about winter and adrenals….