I can’t explain how being able to read messages and responses on the PMR site helps so much. I thank each and everyone for their messages and the exceptional help given.
Continuing on from my post a month ago. I did get a call from a Dr which led me to increase my dosage to 10 mg. I have been on 10 mg for 4 weeks now. I had a blood test on 31 December, my results were abnormal as expected.
This is a list of my results since my diagnosis is March -
Erthrocycle Sed Serum C Reactive
03.03.20 115 87
20.03.20 34 Normal
01.07.20 28 30
11.08.20 55 No test done
18.11,20 57 39
31,12.20 27 14
DatePred prescribed/taken
03.03.20
Nil
20.03.20
15 mg
01.07,20
8 mg
11.08.20
7 mg
18.11.20
3 mg
04.12.20
10mg
Note I decreased by 1 mg at a time as prescribed
Not sure if I’ll get to speak to a Dr anytime soon, in the meantime what advice would you suggest for reducing my dosage. The only symptom I have is a very slight ache in my shoulder, but only some of the time. Otherwise I’m fine, walking, and exercising daily.
I realise my question will seem trivial compared to what others are dealing with, but I feel this forum is the only place I can ask.
Wishing each and every one of you a Healthy, Happy New Year.
Written by
Tinasleepyhead
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If it were me I would want to stay at 10mg for at least another couple of weeks, maybe longer, until you see that those numbers have come down as far as they are going to - the ESR is still on the upper end of barely acceptable. It is really useful to get those markers down as low as possible and then that is your guide as you reduce further. They should be checked BEFORE each reduction to be sure the dose you are on was still enough and keeping things steady. Then you can reduce by 1mg an get them checked a few weeks later. Sometimes you will see them start to just edge up a bit - then you stay at the dose you are at and check again to see if there is a trend - this can happen without you having any symptoms but they can go up for other reasons so you do need to check.
Thank you so much for your response, I will follow your advice. My surgery has not been good at giving me blood tests, but I will just keep asking, this all makes sense to me.😀
Had they taken note you probably wouldn't have had the flare - I suspect the problems started at 8mg if not before. Monthly tests would probably have caught the fact the markers were creeping up and you could have stopped reducing. It isn't rocket science!
I totally agree, looking back at the time of the 8 mg dosage I started suffering with sciatica, which I thought was a separate problem. Only through asking a question on this site. where I was told of piriformis syndrome, I followed your advice (PMR pro Ambassador) did the exercises and increased my dose to 10 mg, all pain disappeared.I will insist on blood tests, as you say it is not rocket science!
I know you have said that ESR is on the high side of normal, but isn't CRP of 14 still high as I thought that anything above 5 is considered outside the normal range? When my CRP was 14 & I started to get some of the aches & pains back the rheumatologist said I was having a flare? I don’t know what my ESR was though & maybe that, if normal , would have outweighed the high CRP?
It depends on the local lab and the range they set. In some cases above 0.5 is regarded as abnormal, in some it is above 10. The ESR however is a fairly simple figure to interpret: over 20 is raised (there was a period where up to 30 was accepted for older patients), 30 is high according to most recent authorities as they have realised the apparent "normal" rise in ESR with age was more likely due to the presence of undiagnosed inflammation rather than there being nothing behind it.
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