I have emailed my doc but, I am consulting with the experts here!
So, four years and I reduced to 1 mg about 1 1/2 months ago. Did well before that , so I reduced and stayed at each 1/2 mg reduction for 2 months or so.
Pain in hips,butt ,and thighs! Walking like a penguin! OTC is no help. Shoulders seem to be okay, managing.
I felt great at 2mgs.
Any advice?
Thank you all!
I’d nip back to 2mg sharpish-and hope that’s enough… it may be , it may not.
If it’s not then try the flare protocol section here returning to 2mg or 1.5mg - not 1mg -as that’s obviously just a bit too low
healthunlocked.com/pmrgcauk...
Thank you for your quick reply. I will try 2 mg and see if I feel better. My doc on holiday today, but I sent an email to him. Again thanks for your response!
Glaring at it won't help ... 😂
or even Ggaring at it! 😂😂
—as you know been a long day….
I did see it as soon as I clicked but knew you'd see it 🤣
Two of a kind….whay makes the world go round… 😏
2mg it seems it is then!!! But maybe a few days at 5mg to clear out the backlog!
I have been in a similar situation, I reduced to 1/2 a mg, if I had a busy day I went back to one mg. I then managed half on one day then one the next, the I moved to half one day none the next, then the pains in hips and back started, so I’ve gone back up to one kg. It is easing slightly.im trying to cope because I don’t want pmr to beat me.
Keep going I personally will not go higher than two mg if it persists.
Best wishes,be positive.
I hear you. I’ve been off prednisone for about 12 months now still have pain in shoulders, neck, hips. I stopped taking them because my blood test said I was PMR free, many blood tests. I’ll also didn’t like the weight gain the cataracts the hair loss I now have peripheral neuropathy, which I think was caused by the prednisone
What are your thoughts on this, your thoughts and other members?
If you really want a range of opinions you need to post as a new thread becuase only the author of this thread and anyone who actively followed the thread (basically DL and me) will see it.
My thoughts? You probably still have active PMR that requires a very low dose of pred to manage it. The markers being normal on pred, even 1/2mg, doesn't mean the PMR is gone, it means there is just enough pred to mop up the inflammation being created, Take away the pred and the daily dollop of inflammation will build up over time until you are back where you started. It is like a dripping tap and a bucket - it will fill up and overflow unless the same amount that is being added is also scooped out, even if it is only a thimbleful.
Most of the adverse effects of pred can be avoided or managed when you know how. Many of us manage weight gain with pred by cutting carbs drastically. That also reduces the risk of developing steroid induced diabetes. Once cataracts are there, they are there and many of us would develop them sooner or later anyway, they are also age related, they are easily dealt with and don't recur. Hair - bit more difficult perhaps but the hair loss I had was due to PMR (which is not uncommon) as it happened for the entire 5 years I had PMR before getting pred. Now, on Actemra and 7mg pred so very well controlled PMR, my hair is actually thicker than it was pre-PMR!
thank you
cutting Uncoated 1 mg 
Tapering from 2mg to 1 Mg 
split dose at 5 1/2 mg
Morning Stiffness still alive and kicking after 4+ years of treatment! 
Amazed at how 1/2 mg of prednisone can affect me
