Diagnosed PMR by GP 7.8.19
Symptoms - extreme fatigue, appetite loss, apathy, jaw claudication, upper arm muscle pain / fatigue sometimes, severe calf muscle fatigue, lesser so thighs, could only stand for a couple of minutes ditto walking. After sitting, could no walk immediately after standing, had to wait for right leg to mobilise/ support me. NO shoulder or hip pain or headache
Both the blood indicators were very high: you will know what they are
Pred prescribed doses weekly as follows 30:40:35:30: & then 25 for 3 weeks till now.
Day 1 immediate regained energy. By day 2 pain / discomfort gone. Still up to today slight jaw claudication when chewing a lot.
Week 2 one blood indicator back to normal the other I think the C one had reduced by only 50% hence increase in Pred.
Rheumatologist says I have atypical PMR and good response to steroids. Not to worry about raised bloods as they can be misleading.
I realise from here and meeting others at the AGM that I was suffering less than many others and with fewer symptoms
His plan is to reduce to 20mg tomorrow for 3 weeks and reduce 3 weekly by 5mg up to 10mg and review with him mid November.
What do you all think?
Follow this link and read up on both GCA and PMR, they are the BSR Guidelines to the Disagnosis and Treatment of both - they can be downloaded to make it easier to read.
pmr-gca-northeast.org.uk/us...
Sounds to me when I read your post that you have both GCA and PMR.
If you have GCA, then you need to watch out as that starter and reduction plan sounds a bit fast to me.
Yes your Rheumy is correct both ESR and CRP are guidelines, but they also don't work for everyone and they also just mean something is going on and they have to find out what, ie they can be raised for whole host of other illnesses.
Thank you I will be most vigilant. I make notes of any changes as they occur so as not to forget