Tapering & correct Calcium & Vit D levels for some bone thinning.

[2Yellowdaffodilsx]

Hi everyone

Sorry here I am again. Went up to 9mg a while ago on advice from you. Now 7mg to 6.5mg very slowly. Legs still so stiff & painful. Walking difficult. Diag Sept '18. Don't remember any miracle recoveries from the pain..but once legs settle I sleep well. The years flash by! Can't seem to find the best level of Predisolone for me. Always taken Calcium & Vit D with K2.. GP sugg I call her but I can't take anything with side effects have to say I wake up too late for a call back must try harder next wk! Feel enough Steroids but know I'll have to continue bit longer. I'm not a very good patient! Don't really want to up them again..maybe stay on 7mg for longer? I wish you all a safe & a sparkling Christmas & a Healthy New Year huge thanks all.

[DorsetLady PMRGCAuk volunteer]

In your situation I would be staying at 7mg certainly over the next couple of weeks…too much going on! Maybe longer.

In fact when I was around that dose (GCA) I went to NZ for 6 weeks to see daughter and family, and decided I wasn’t going to attempt to reduce until I got back home. Not an issue.

If you can’t find your Pred level, then would suggest you stop worrying about reducing until you do. ….there is absolutely no point in trying to rush things,,,we as patients know that, although doctors don’t alway appreciate it.

[2Yellowdaffodilsx in reply to DorsetLady]

Ah ok agree huge thanks. One step at a time. GP calling back today so can discuss. Take care

[HeronNS]

If your legs are stiff and painful I think you should definitely stay at 7, if that was indeed enough to control the symptoms. Please don't be afraid to stay at 7, or even 8, longer. In the big scheme of things this is a middling to low dose. No point taking not enough pred because then you don't get the benefits. I do agree that it's nice to be able to taper lower. But a few more weeks where you are right now sounds like a good idea. If it turns out to be pred withdrawal the pain should go away in a few days. But if it persists, or seems to get a bit worse, then you do need a little more pred for the time being. We encourage the slowest taper as it gives your body a chance to adjust before the next reduction, and also helps you recognise your lowest best dose for the time being. Some of us have to stay at a lowish dose for a long time before the disease process diminishes and we are able to taper some more. If nothing else, PMR and pred teach us patience.

[2Yellowdaffodilsx in reply to HeronNS]

Thankyou so much HeronNS great advice I'm sure my GP will endorse. Have a fab Xmas & New Year. Appreciate.

[HeronNS in reply to 2Yellowdaffodilsx]

Thank you. Owing to covid restrictions one son and partner invited us and other son and family to his place for Christmas Eve dinner, and we exchanged gifts and had a lovely time. Tomorrow , oh I guess later today, it is now Christmas Day (12 midnight as I write) they are going to be going to members of their respective partner's families for Christmas dinners and we will be on our own. I honestly cannot remember last time it was just the two of us. Maybe around 1970? Certainly not since first child was born in 1978. We have been so lucky.

Have a happy holiday season.

[Bcol in reply to HeronNS]

Morning and seasons greetings Heron, likewise here, we had planned to visit family and grandchildren today but in the end decided it was better to stay at home. It will actually be nice to have a lazy and enjoyable day on our own in our own house ( another story, for another day that one). 🙂🙂🎅🎅

[HeronNS in reply to Bcol]

Son showed up with bag of freshly baked blueberry scones this morning, and I gave him the apples and baby cheeses I'd forgotten yesterday for their Christmas bags. He fed us well yesterday, and this evening they are catering the other set of parents, sister of his partner and their family including twin boys nearly seven, eight people in all. Can't say I'll miss that confusion! In olden times they've had as many as seventeen, this before the babies began arriving. As an only child with no other family in NS this was all very different for me. The ten month old at yesterday's gathering is busily cutting several teeth and rather fretful, although of course none of us minded.