SUPPORT WANTED PLEASE!

Hello Pat and many thanks for your fast reply.  How frustrating for you that though there is a group in Northern Ireland, it is too difficult for you to get there.  Never mind, at least meanwhile you have this friendly forum  so aren't left to feel too alone with your PMR.

Mrs. O, I just wouldn't know how to thank all the good people on this forum.  You all have been a Godsend - This site is vital for all the knowledge and information on PMR/GCA that got us all through our journey at the beginning.  I never (and I'm sure others would agree) forget an act of kindness whether by pm or general information.  You all kept me sane.  I was diagnosed November 2014 and was put on 20mg of pred I am now on 4mg - was on 3mg and then had to go to four but am now doing DSAS to get to 3.5mg.  I went undiagnosed for quite a time as I have ME/cfs diagnosed 2001 - there isn't a Dr. or Consultant that would have all the medical information, even if they had all the info, they wouldn't have the time to convey it to us.  My energy is low and I have no complaints, just one, my thigh muscles ache all the time when I am getting up or sitting down, every other muscle is fine, but I have noticed also that my left side is weaker than the right.  Oh enough of me ranting on lol  I really do hope that lady finds some support near where she lives, if not this website will be her own best friend and that's the truth.  Take care  Regards Pat

Pat, what a lovely post.  One little bit of advice for what it's worth!  If you are feeling so low in energy and also still have aching in your thigh muscles, then you might just be at too low a dose to manage any underlying inflammation that is still lurking.  I had a major flare at the 3mg dose, almost putting me back to the start, and I did have to increase to 10mg for a couple of weeks on the advice of my wonderful rheumy to get on top of it.  You are only just over two years along the journey with PMR, although I know that might seem like an eternity at times, but it can take several years to kick PMR into touch for many of us.  It took me more than 5 years once diagnosed and on treatment, but  after the scare at 3mg, I took things so slowly with further reductions that even a snail could beat me!  Please don't hesitate to increase that dose back to where you last felt comfortable perhaps 4 or 5mg - if you feel better, then that will prove to be the dose you need for a little longer.  Good luck, Pat.

Thank you Mrs. O,  I cannot remember the last time or what dosage I was on whem I felt ok (if at all).  I know it has been a very shourt journey and still is.  It's never over until the fat lady sings lol (I don't sing)  Also developed osteoporosis in the lumber region of my back and also left hip.  When I asked for a Dexa Scan at the beginning I was refused but had one last year so I will never know if I already had osteoporisis or the pred did it. My T score is -3.7 and 0-9 for left hip I think.  Maybe I should go up to 5mg, I will see - I am so reluctant.  Having said all that I am better than I was this time last year.  I couldn't walk very far without my left calf pulling.  It started off with both calves pulling but now it's only the left one.  Thank you for giving me your spin on dosage.  The jury is still out.  Again thanks Mrs. O you are a gem.  Take care  Regards Pat