Posted , 15 users are following.
Hi, all I'm new to this I have just been diagnosed with PMR, my doctor has prescibed a 30mg a day, from what I have read it seems a very high dose to start on, any advice please
0 likes, 37 replies
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wannie jean07565
Posted
from getting GCA--my rheumatologist started me at 80mg per day, huge dose
Its because he thought I might have GCA, so 30 mg is a good place to start.
Good luck, keep busy
sandy08116 wannie
Posted
chrissie10254 jean07565
Posted
Hi Jean, although I have had PMR for 9 months I am quite new to shaing my experiences on a forum such as this. My initial dose was 20mg per day, which I managed to reduce fairly quickly - 3 months- to 12mgs. Then the problems began since I reduced too quickly and after seeing the consultant had to double back to 15mgs and start a more managed reduction. Now I'm down to 8mgs with 7 looming any day now. Your initial dose might reflect the blood picture (I never had a conclusive blood test), but 30mgs does seem a bit high. Have your symptoms abated?
Sars77 jean07565
Posted
Hi Jean. I'm a newbie too. My doc put me on 30 for one week, 20 for one & then dropped me to 10mg. I was ok for a while then had the most excruciating back and leg pains which I am told are from adrenal gland stress caused by lowering dose too quick so he upped me to 15mg which he ssys is for 14 days.
It's all new to me & I'll be popping in to see him again as I've not even been referred to a rheumatologist so am quite in the dark.
TheRaven Sars77
Posted
I'd personally have a big problem with your doc. He's dropping the doses way too quickly in my opinion. From everything I've read here and elsewhere, you can "most" of the time drop fairly quickly until you get to the 15-20mg range. Once you hit that area you take longer between reductions and even then are reducing by 10% or less each time. I'd be thinking more like a month between reductions, certainly not just a week!!!
Bring a big stick with to your next appointment to beat the doc with, so you can give him an example of the pain caused when he reduces your dose too much and too quickly.
EileenH Sars77
Posted
Those drops are actually not unusual for someone on a short course of pred and it is pretty unlikely your pain is from adrenal stress since you hadn't really been on pred long enough for that to be a problem - unless they aren't in good nick anyway and that is possible.
However - your doctor obviously has no idea how to manage PMR. Normal is to start with 15-20mg for at least a month or 6 weeks until the symptoms have improved and are stable and then start to reduce providing the blood markers have also fallen considerably. For success the reduction needs to be far slower in PMR - you aren't reducing but tapering to find the lowest dose that manages the symptoms as well as the starting dose did.
This is a link to our resources page
https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316
and about halfway down is a heading "Bristol paper" - written by a PMR/GCA expert to help GPs manage PMR in particular better without necessarily referring the patient to a rheumatologist - mainly because it can take months. It is fairly easy to read - and perhaps your GP would agree to read it?