Five years on and been doing okay. Struggling to get below 1mg prednisone though. I've been splitting the 1mg and taking it slowly but maybe not slowly enough. I now live in new town with new doctor (two years here) . I'm growing conscious of morning aches and stiffness in both shoulders and hips without extra activity to account for this. Over the past six months I've just increased the dose "just in case" and haven't gone back to the doctor. Now I'm wondering if requesting a blood test to measure the CRP level would offer any insight into what's happening. I'm aware that there may be extra aches that are oesteo or age-related. I'm a fairly fit 74 year old. Complicated by having a new doctor who doesn't know me though she's older and seems understanding though close to retiring and very part-time. I'm wary of being "forced" off prednisone and equally don't want to stay on longer than I need to. Just a bit lost here.
Flare or not: Five years on and been doing okay... - PMRGCAuk
Flare or not
Why not ask her for some blood tests as you have not had any for a while?
Thank you for replying. I requested a blood test and she agreed. Plus suggested I increase my prednisone and not rush to decrease again. I'm very relieved. Rushed in for the blood test and came home to take an additional 5mg! Sort of hoping the bloods will have an elevated result to clarify for me that it's not "all in my head."
Whatever it is, it isn't in your head. As you've probably read on the forum, blood results aren't always raised. If it is niggly aches perhaps they won't be. Personal opinion - they would raise if it was a humdinger of a flare, particularly for GCA, but generally not otherwise.
Are you using the protocol for plus five then after ten days or so reducing to the level at which you were previously comfortable eg something like 2 or so, if that is where you felt ok?
I have been taken just .5mg and after the bloods were taken I took an additional 5mg. I'm thinking to take 5mg for a week and then return to 2mg. I managed six weeks of overseas travel on 2mg returning two months ago. I think I became over confident and rushed the taper once I returned home. I've been trying to talk myself out if the various aches over the past two weeks or so however the fatigue and upper arm heaviness have signalled An early flare to me. Thank you for responding.
That sounds a sensible approach... hope it's successful.
Thank you.
The trouble with persuading yourself that it's all in your head, is that you may go without the medication you need. Why would you be imagining this kind of pain anyway?
The problem for most of us is that we grew up in an era when doctors had got very excited about psychosomatic cause of disease and wanted to apply it to everything.
At such a low dose there really isn't anything to worry about - and if 1 or 2mg keeps you stable, take it and run!!
With hindsight it seems so obvious to do that. Thank you.
Hindsight is a marvellous skill 😊
Just an update. I took the extra 5mg prednisone after the blood test having taken .5mg beforehand. Yesterday another 5mg and today too with no relief in bilateral arm heaviness and pain. The discomfort feels just like the initial pain five years ago. I've put myself to bed this afternoon and taken another 5mg making 10mg for the day. Wondering how long before I should get some relief? The crp test was in the normal range.
Usual advice is to add extra 5mg for 7-10 days [you can stay for 14 days] without affecting the drop back down….
But as you have gone up to 10mg then hopefully it will be quicker - but probably at least a week.. if it does, then it’s drop back down in 2 steps… perhaps to 5mg, and then to 1mg [not 0.5mg]. Fingers crossed it works.
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