Pain in legs and ankles

[MarilynRose]

Can I ask if anyone has pains in there ankles this last week has been terrible and muscles in legs .tapering by 5mg yesterday and starting to get headaches again .

[DorsetLady PMRGCAuk volunteer]

Hi, 5mg is too big a reduction in one go….see you started on 40mg, so do you have GCA and PMR? - guessing so as headaches mentioned. I know you said biopsy didn’t show GCA , but as already explained they aren’t always accurate.

Think you need to get advice from Rheumy, please ring the helpline this morning as weekend approaching….or GP.

[Uglow in reply to DorsetLady]

Please can I have helpline number

[PMRpro Ambassador in reply to Uglow]

It is a number YOUR rheumatologist and hospital knows, not any of us. Many, but not all, rheumatology departments have a team of nurses and and other healthcare professionals who are able to provide emergency advice that is outside the scope of a GP.

[Uglow in reply to PMRpro]

Oh ok thank you

[DorsetLady PMRGCAuk volunteer in reply to Uglow]

your Rheumy helpline at your hospital…or rather MarilynRose’s

[PMRpro Ambassador]

What dose are you at now? The basic rule (for comfort and success) is that a taper step shouldn't be more than 10% of the current dose - and 5mg is obviously a lot more than that whatever dose you are at. In fact, it sounds that it is possible even the orevious dose wasn't enough to manage the inflammation if you had pain before this latest drop.

[MarilynRose in reply to PMRpro]

I go to rheumatologist next week so will see what she says I have not had results told to me yet about if I have GCA after biopsy or just pmr so in limbo land .

[PMRpro Ambassador in reply to MarilynRose]

Well, I'd hope if they thought it was GCA, they would have contacted you about the dose you need. But a negative biopsy does NOT mean it definitely isn't GCA. Then they must go by symptoms and clinical history.