My Dr appt this evening.

[IdasMum]

He wasn't unhappy with my rejig. I'd raised Pred to 7mg from 5mg and left off the lunchtime Hydrocortisone (20mg).

He's okay'd me to stop the Hydrocortisone completely and referred me back to Rheumatologist to investigate potential Rheumatoid Arthritis in both hands. She'd mentioned my hands in a letter in 2019 which I showed him and he thinks that there may be a better treatment for this than the Pred.

He asked about Dexa scan which I had 6 years ago (it was good) and I think may have asked for another. I am too tired to look through the paperwork this evening, so will follow up tomorrow.

My forefingers and thumbs are very painful and with the recent change of meds (5mg Pred) have been much worse and have not really improved since I increased to 7mg 2 weeks ago. Loss of muscle tone in thumbs and forefingers mean I am lifting stuff in the kitchen (pans, kettle etc) with my last 3 fingers which is difficult. To an onlooker you cannot see how I have adapted but it's hard.

I was encouraged as a child to not complain about pain/illness, so I tend to just get on in the kitchen and not ask for help. Mad I know but it's how I roll.

So now I have seen him and we're moving on I am going to treat myself to a couple of days on an extra 10mg to see if I can kick some of the hand pain for a while and then settle to 7mg.

I have a question please. I felt there were side effects when I dropped the Hydrocortisone (20mg) at lunchtime. I haven't got it now but my inner thighs felt like they'd been punched. Do you expect there to be side effects?

Bonne soirée

[PMRpro Ambassador]

Steroid withdrawal - it is a DIFFERENT corticosteroid but it is still a steroid. That was the equivalent of dropping 5mg pred in one step - you'd expect to notice that!

[IdasMum in reply to PMRpro]

Thank goodness for you! I will drop 20mg in the morning and wait 2 weeks and drop again and see how I cope. I really think he is fishing in the dark.

Will make the rheumy appt tomorrow and hope I get a reasonably early appt.

[PMRpro Ambassador in reply to IdasMum]

"I really think he is fishing in the dark."

I think he is - there never was much logic to what he was doing. It is one thing getting a patient off pred using HC when the PMR is in remission - but when it is still active, it must come first.

[IdasMum in reply to PMRpro]

I mis- wrote my HC dose, it was 10mg I dropped and have dropped another 10mg today. Had a large dose of Pred so hope to feel good for a couple of days and get stuff done.

Have an appt with rheumy for late January. Our health service is good and I think they are also understaffed nowadays. Our nearest A&E often closes over a weekend due to staff shortages. We made other appts this morning, Cardiology for March! and I wasn't able to book another Dexa scan as they have nothing left for this year.

[PMRpro Ambassador in reply to IdasMum]

Things have improved a bit here - they let the staff who refused to have a jab back. And apparently a lot of new entrants in the care-home sector - exchanges by the sound of things: people left care homes and haven't come back, possibly working in hospitality. and people from other fields, like hospitality, are going into care professions.