Pred withdrawal or PMR
Posted , 4 users are following.
Hi everyone. I have been following dead slow method of reduction and I am down to between 2.5 and 3mg per day. I have stayed on this dose for about 6 weeks now. I have the usual joint aches along with other withdrawal symptoms I've had before. Normally these go away in time and i am ready to go to the next stage. This time they haven't gone and I also am having trouble getting out of chairs and getting undressed, pegging washing on the line again. Should I just battle on with reduction? I am confused as to whether this is withdrawal and will go eventually or is it PMR?.
My last blood tests, nearly a year ago, showed no problem but then my markers were never particularly high from
the beginning.
I am now 64 and have been on pred for about 5 years. This is the lowest i have ever got on my dose and i don't want to risk a flare up.
Any thoughts gratefully received, thank you.
0 likes, 3 replies
Anhaga shirley40391
Posted
You may have reached your lowest best dose for the time being. Don't delay, go back up a couple of mg for a few days, may not take long, until you feel better. Some people suggest going up by 5 mg for a few days and then dropping right back down, but not to the dose where you flared, stop just above that. In my experience when at such a low dose a smaller increase may work if you catch it quickly enough. If you've been suffering for a few days, bite the bullet and take the extra 5, in the end you'll take a lower amount of pred to get things under control again. I had a flare when I was at 1.5 and tried to keep going to zero. I fiddled around a bit, in denial that I was flaring, and in the end had to go back up to 7, but only for a day or two, then I went back down rapidly to about 2.5. in the end I was stuck at between 2-2.5 for a couple of years. I would try another taper every few weeks, sometimes having to increase slightly, like to 3 or so, and eventually, it "took" but by then I was doing each step of the DSNS taper, in .5 mg decrements, so it took over a year to get from 2 to my recently achieved zero. I have had PMR for over six years, was on pred for five.
Anhaga
Posted
Oops, meant to say I was doing each step of DSNS twice!
EileenH shirley40391
Edited
No - that is the sign you have gone too low with the dose to manage the inflammation. You are never heading relentlessly to zero, you are looking for the lowest dose that manages the symptoms as well as the starting dose did. You should never feel worse a week after completing a reduction step than you did at the start.
Last week Professor Bhaskar Dasgupta gave a PMRGCA webinar - and said during it that he leaves many patients on 2 or 3mg long term as it seems to reduce the risks of a return of symptoms and is such a low dose it is perfectly safe.
The link to the webinar is here: http://www.pmrgca.co.uk/content/pmrgcauk-week
It's an hour and a half long so - maybe go to the loo and get a cup of tea first!!!