I was diagnosed with PMR in June (2023) - phone appointment with GP who was really on the ball, then bloods: ESR and CRP (13 June) 62 and 34 respectively. I was reluctant to take the pred - hadn't found this community then - but Rheumatologist (thanks to BUPA) and pain persuaded me. Started on 15mg on 21 July. As the Rheumatologist had said, I then reduced to 12.5 after a month.
Wondering if I reduced to 12.5 too soon and if I should go back to 15 for a bit longer because the symptoms are getting worse - not anything like as bad as before but feeling achy in shoulders, upper arms, hamstrings, calves, and I'm energyless..
Also wondering whether I'm doing too much - I suddenly had energy after 3 weeks on 15mg, and this coincided with a week when my daughter was visiting so I went out a few time. I've taken it very easy this week, but it still seems to be deteriorating as the week has gone on.
I think I've answered my own question - thinking about the "bucket" idea. I think I'll stick on 12.5 today, but go back to 15 tomorrow for maybe another couple of weeks. I'm seeing the Rheumatologist on 5th September, so maybe ask her then?
I'd really like any views from folk on here - I have learnt so much from this group already, and it's nice to know I'm not alone.
Thanks everyone! Amanda
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Curious101
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It might be wise to return to 15mg and get things back under control…. and although the guidelines do say 15-12.5-10mg reduction it’s not achievable for everyone. Some need to reduce by 1mg only [or if you don’t have 1mg tablets, the 2.5mg can be cut in half to give 1.25mg just as long as they are the plain white ones.]
Hello, it’s good your diagnosis was sorted reasonably quickly. I can think of 4 things here. 1) 4 weeks may have been a bit brief and 6 weeks may have been needed to sort out the initial inflammation. 2) 15mg might not be quite enough but this could have been because of 3) you did the classic; feel great compared to before and make up for lost time. Finally 4) although 2.5mg is commonly suggested as a drop it is over 10% and can still be too big for some and along with the other 3 points was more likely going to fail.
Sept 5th is not far away so in the absence of medical advice, until then I’d go up to 15th and really rest. Perhaps 1mg drops will be better for your body and easier to pinpoint your lowest required dose as right now you know it was somewhere in between 15 and 12.5 when it might have been 13 but you are faced with going the whole hog. In this case it’s unlikely in the circumstances but the principle will be relevant later.
They used to keep patients on the starting dose for 6-8 weeks and 15mg is really at the bottom of the range, the 2015 Recommendations suggest "the lowest effective dose in the range 12.5-25mg/day". If you start lower, you often need longer to clear out any accumulated inflammation - and only when that is cleared out can you comfortably start to taper the dose to fin the lowest effective dose for maintenance.
I suspect the combination of reduction and doing too much has resulted in the problem so I would go back to 15 until you feel better and then try a smaller step down. Have you got plain pred and cut the 5s or gastroresistant and 2,5s?
I think they're plain ones - I was cutting the 5s. I guess they must be the cheap ones since I got them even when I asked for 12.5 dosage.
Thanks for all the lovely swift replies. I took 15mg this morning, and will stay with it until I feel better and then follow one of the very slow taper plans I've seen on herre...
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