Update: The Squeaky Wheel (heard fr Neuro)

[Missus835]

For months I have been unable to find answers to any of my questions even on visits to my Rheumy. In the meantime, I've been forwarding various links to my former Neurologist (links from PMRPro and DL, etc.) Yesterday, I was sitting on an ice pack and my phone rang. It was Dr. Taylor, the Neurologist! He went over all my tests (which weren't too bad actually).

I do have osteopenia, but of course can't take AA. I do take 4000 D3 and also K2. CRP was 1.1. I suggested that the higher Pred might have lowered it. He does not "think" that cranial GCA is evident (although he sounded kind of unsure; out of his "wheelhouse", but is not neurological?). Hip and spine x-rays showed no sign of breakage or arthritis, although we still don't know what's causing all this horrendous back pain and muscle spasm. SED rate is good. He could see no immediate alarms. He is still suggesting I wait to see the Rheumy, appointment which I finally got moved up to June 26th. He insists I keep in touch with him, because I had apologized for all the emails.

Why do doctors not get the correlation between the dose of Pred and CRP/SED being lower because it controls the inflammation? As I told him I was at 27 mg. and with PMR breakthrough pain I upped it to 30 mg. and this is why the CRP had dropped for all intents, to normal. He wasn't sure. You can tell in someone's voice when they aren't sure. At least, he's taking the time to read the links and that's progress.

[SheffieldJane]

Well done for your training programme for neurologists and well done to him for being receptive. I hope with all my heart that a treatable solution is found pronto.

[Missus835 in reply to SheffieldJane]

Thank you SJ. He's always been a great guy.

[piglette]

The thing is inflammation markers like ESR and CRP can be raised for several reasons even a cold. Also around twenty per cent of people do not get raised figures, so they are not a particularly perfect way of measuring PMR they just may help. The important thing is how how you feel. I have very high inflammation markers all the time and feel fine. The dictors have decided it is just me! CRP 3.9 (39 UK) and ESR over 50.

[Missus835 in reply to piglette]

Thanks Piglette.

[Grammy80]

Glad that appointment got moved up but, as you said, overall not a bad report~!💞