Dear fellow inhabitants of planet PMR. There is a wealth of personal experience on this forum and I would appreciate any advice for my current situation.
After 6 + years travelling down the PMR road I, like many others it seems, find themselves on a 6mg dose of Pred and unbeing able to reduce further. Numerous attempts at reducing over the past two years but without success. Now I have muliple pains and stiffness, especially in the mornings, neck, shoulders, finger joints, hips etc, but with CRP / ESR levels about normal, my GP does not recommend increasing the dosage even temporarily. However, Co-codamol / Paracetamol as prescribed are of little or no help in relieving the sumptoms.
Any advice would be appreciated
Hello, I don’t know about PMR as I have only had GCA so far. Since about 6mg reducing has been much harder. I reduce by 0.5mg and roughly do DSNS. By the time I get to three days in the week of the new dose I wake in the mornings feeling like I’ve been sat on by an elephant and feel groggy. I have pains all over my body that move about and sometimes the fibromyalgia spots are bad. I now know that I have a month of this and then I pop out the other side like a cloud has lifted. So far I’m down to 4/3.5mg and the pattern is the same, this week I feel like I’m 500 years old. If I could cut my enteric coated tabs I’d do 0.25mg jumps for sure.
So, I don’t know if it is your PMR flaring or just your body adjusting, but it was the all over nature of your pains that made me wonder.
Thanks for your reply, I shall persevere with the 6 mgs for the time being.
I guess you could ask yourself if it feels like you were before diagnosis.
Similar but different, much more intense when it started but didn't feel like joint pain , more muscular
Hi snazzy, sorry to repeat myself, but you can reduce with 0,25 mg. assuming you want to go to 3,75 mg what is needed is 7 and a half pred tablets, 5 mg each. You grind them and fill 10 capsules. One can buy grinder/pill cutter and a little device to put 10 enteric coated capsules in. Bought them at Amazon.com. Something to consider? good luck
Hmm with so little powder to divvy up, I wonder what sort of error one could get and whether it might be up to 0.25mg in either direction?
o I do work with excellent light, and I wonder if it does any harm when one day it is 0,10mg less and the next day the same amount more. If you do the slow method one varies much more. from day to day.
True