Spoke too soon!

[Agavegirl]

My last post said I had taken my last pred. However it was not to be. I was hoping my rheumy was going to sign me off on what I hoped was a final face to face appointment but he said my bloods were CRP 16.9 and ESR 27. I don’t have any GCA symptoms but have had stiffness in my hips for the last few months - about the time I was reducing from 5 mg. He thinks the stiffness may be PMR. He’s put me on 5 mg per day for a month reducing each month by 1 mg. So ho hum. Looks like I will be with this forum a bit longer.

[DorsetLady PMRGCAuk volunteer]

Oh dear... if it is PMR, then just be a bit careful about the reductions... make sure you are really okay before you step down again..... and perhaps consider trying 0.5mg as you get lower.

Hope all goes okay, but you know where we are!

[jinasc]

BTW have you had a short cortisol test or a full blown Synacthen test on your Adrenals?

[Agavegirl in reply to jinasc]

I haven’t had either. I didn’t think to ask rheumy.

[jinasc in reply to Agavegirl]

Ask your GP.

[PMRpro Ambassador in reply to Agavegirl]

Would be good before you go back to 5mg for long. Get the GP to do a basal cortisol test for a start, that can be done quickly by them (well, assuming they will manage to do a blood test this side of Christmas!). A synachten test means a hospital clinic appointment

[SheffieldJane]

We are not that bad! 😂Our CRP levels can present as raised even with a cold.

As Jinasc suggests, symptoms can arise from adrenaline deficiency.

[Hidden]

Might be worth slowly down even more by 0.5mg monthly....seems to be working for me. I'm currently on 5.5mg.

[Maisiek]

You may not be aiming for zero- Prof Dasgupta was keeping his patients on 2mg long term? X