Second year report

[SID3]

It might be of interest to read my relatively banal account of ‘progress’ after two years, just up. PMR has not, of course, gone away. I am now on 3.5 mg having got to 3.0 in March but - without necessarily flaring - then having struggled too much to be able to manage a six week semi-work trip to Bologna (two of us driving down) on that level. . So I followed the advice here and took an extra 5mg for one week then down in two steps to 3.5, which worked. I am 74 and a semi-retired academic. I’m determined to remain functional without being pig-headed about it. I play golf once a week but it is a bit of a struggle until the pred kicks in. I just about pass the jacket test (ie putting it on myself) in the mornings but often do not sleep well during the last hours before getting up. These trade offs are inevitable. I have also gone back up to 52 HBA1C after steadily coming down from the original pred-provoked peak of 57. This is partly due to the recent increase in intake and partly to losing dietary discipline. The severe wrist pain which started my encounter with PMR is not there though sometimes I feel it lingering.

All in all I can’t complain given how so many others here have had worse experiences and am hoping that the rest of this year will see the inflammation decrease further. Best wishes to all.

[PMRpro Ambassador]

Not bad at all I'd say! How about taking the pred earlier on the golf day? Have you tried splitting the dose at any point to improve the mornings?

[SID3 in reply to PMRpro]

Yes, I am trying to take the pred earlier on difficult days and am thinking about splitting between midnight (I'm a late bird) and 8am. Presumably then the pred wears off earlier but in the evening it matters less.

[PMRpro Ambassador in reply to SID3]

If you don't go to bed until after midnight what about taking it before bed? Sometimes when you take it by 2am, it is there ready and waiting for the inflammation early in the morning and it works far more effectively and nothing comes back later. Always worth a try

[SID3 in reply to PMRpro]

I will give it a try. Thanks

[SheffieldJane]

So far, so good and not at all banal. 🍀

[Jackoh]

Not banal - all is looking good👍

[SID3 in reply to Jackoh]

thanks for the encouragement, everyone

[tempusfugi]

Thanks, SID3, for your encouraging and interesting email. You seem to be doing v well. As a matter of interest, do you recall when the severe wrist pain calmed down ie what level of Pred were you on? Just interested because I have same (+ more ie hands and arms). My problem started a few months into PMR.

[SID3 in reply to tempusfugi]

The severe wrist pain was the first real symptom and got so bad I could not sleep. When I fainted one day and was carted off to hospital they gave me 10mg which within a day had led to the pain more or less disappearing in the wrist. Also calmed the shoulders and biceps but that soreness has never fully gone. Good luck

[potterylady]

Wow, SID3, thank you for your update. I appreciate knowing how someone else is getting along, down the road a bit. Thank you so much. I'm happy you're functioning as well as you are!!

[SID3 in reply to potterylady]

Thank you very much. It is helpful sometimes to step back so as to review progress, even if it is not as fast as we like. After two years it was supposed to be over, not that I believed that.