Update on pain symptoms

[Kiwisufferer2019]

Just an update, at 9 this morning I upped my dose of pred from 9.5 to 15 mg prednisone, 8 hours later the relief of painful symptoms is incredible, not completely gone,but sooo much better. I hardly had any sleep last night, just ached all over all night.

[DorsetLady PMRGCAuk volunteer]

Good…

[PMRpro Ambassador]

Good.

Bit like the first day you took pred? I was on methyl pred for some months and it just didn;t work for me, even at 20mg. I was switched to Lodotra and the first day of that was like my first day on pred when I got relief in just under 6 hours. It is a feeling you never forget.

[Kiwisufferer2019 in reply to PMRpro]

Yes it was like the first day I started. Rheumy rang tonight, he still doesn't think it's pmr, was ok with me upping dose until after my holiday in Australia but wants me to taper as soon as I come home, he said the side effects are not good and I have a muscle tear. He has the results of the ultrasounds and they don't indicate pmr. I'll have to play it by ear and see what happens. It's all very confusing! All I know is the prednisone has alleviated the pain. He agreed to 3 days at 15 then 2 at 2.5 then stay at 10 till after holiday. It was good of him to ring. Janis

[PMRpro Ambassador in reply to Kiwisufferer2019]

The only scan I would accept showing it categorically wasn't PMR would be PET-CT when not on pred at all. U/S is good but not infallible - in a study 4% of patients with PMR didn't have shoulder bursitis. Like the TAB for GCA, when it is positive it is very very good - but if it is negative there does remain a chance it is a false negative.

But is he now going to work hard an finding out WHAT it is if it isn't PMR? Or would he rather leave you incapacitated and in pain without a diagnosis?

[Kiwisufferer2019 in reply to PMRpro]

I'm seeing him just after my holiday, so will see what his plan is. I'll try and get my nurse daughter to go with me, another pair of ears would be good, and I'll take notes if she can't go.

[DorsetLady PMRGCAuk volunteer in reply to Kiwisufferer2019]

Think you might need longer at 15mg to mop up accumulated inflammation - say 5 days..and 3 to 4 at 12.5mg before dropping to 10mg...

but up to you..

[123-go]

Do take extra medication with you to Australia if you have spares-just in case you need it. Have a lovely holiday.

[Kiwisufferer2019]

Thank you, I have plenty of medication so will make sure I take a good supply, and thanks Dorset Lady, I will take the higher dose for a couple of extra days. Rheumey still doesn't think it's pmr, ???

[DorsetLady PMRGCAuk volunteer in reply to Kiwisufferer2019]

Maybe correct - but as we’ve said, sounds very PMR-ish to us…