Hi, I don't know if you remember my story, but I'm the one who can't get reduced on prednisone without a great deal of pain coming back. Well, several days ago after being on 20 mg for a long time and crying every time I walked down the hall in my house, I suddenly started taking 30, 20 morn and 10 at afternoon, and within a day I felt better. The searing pain in my hips was gone and I could walk without crying. The past week I have driven myself to two visits to friends and to a dr appt. Though still in pain, I have done this when I would usually have to cancel the friends, and have my brother take me to the dr. Everyone will tell me I'm doing a bad thing, so I haven't told anyone yet. What do you all think?
I expect EVERYONE on the forum will write in and say what I am about to say. I.e the dose of Pred you need to be on is the one that eases your symptoms!! In your case that’s quite high but…let the Pred do its work and reduce the inflammation then you can SLOWLY start reducing. Pred is our friend not a beast to be feared. Far better to let it do its job because the inflammation can cause far more harm long term than a high dose of Pred.
Good luck Deb!!!
Did you ever try doing that with 20mg? Maybe the problem is that the antiinflammatory effects isn’t lasting the full 24 hours - happens to a lot of people. And has your doctor EVER thought of trying depotmedrone injections to try to manage your pain? Or possibly even dexamethasone tablets - as I have recently met a few people who find it covers them better 24/7.
I do appreciate the fear they have of pred at high doses. But if there is no other option for pain relief - surely quality of life overrides that?
Have you talked to your doctor as it seems there is a problem if you are still on such a high dose after five years?
Thanks. I will mention this to the dr. I’m so conflicted, but so desperately in pain.
Yes, she doesn’t think it is PMR anymore, though I do. I’ve had many tests.
My SED rate is 69. I am now prediabetes, too.
Has she thought of fybromyalgia or rheumatoid arthritis if she does not think it is PMR?
Fibro wouldn’t account for the pretty high ESR though.
It was just some thoughts.
Yes, I have fibro and have had it for many years; the pain is quite different. I tested neg for rheum. arthritis.
DebbieHurts, 30mg is what I need to get relief almost two years ago . I was on 30mg for 6 weeks before starting tapering and was PMR pain free. I have never reduced if I had any PMR pain since. DebbieHurts, I am very active and always hurting myself so I have to pay attention to my pains. Try to be positive, active and smile . Had great day skiing with three friends today in the NM sun. 
Michdonn, does this mean you are on 30mg now, 2 years later?
Oh no Debbie, I was only 30mg for 6 weeks then started to taper. Currently on 5mg and will start tapering to 4.5mg using DSNS as soon as I finish skiing this season. Have to enjoy the snow while we have it.
Michdonn, did you use the extra slow method after six weeks on 30? Have fun skiing.
It does seem that you have more than a PMR problem, as this has gone on for five years, and you are still going up to 30mg of pred, although I may be wrong. I remember you in 2014 saying how much pain you were in.
Yes,Debbiehurts I have used the DSNS method after the 6 weeks and have always decreased my dosage less than 10%. Starting after skiing I will drop from 5 mg to 4.5, then from 4.5 to 4 which will be greater than 10% for the first time. We will see how it goes.
It was the forum that got me going when I could not walk, especially EileenH. I could not walk and with the encouragement of the forum I got up and moving. You have to smile.
Every thing seemed to be going well with reducing then, got down to 13mg. Then I had pneumonia and since then I can’t reduce the pred. without a lot of pain in the PMR places. That might have been 2014, like you said. Since then I have had: two fractures in my back, two knee replacements, continuous oxygen, back pain, fibro ache, PMR pain. Just a leetle too much for me.
Debbiehurts, is your diet helping, first with your bones and then with PMR. NO sugar of any kind that is not organic. We eat nothing that is not organic. Then check on all foods that help to grow bones. My bones on the last scan were denser than my first scan. Which the doctor could not explain, I told her diet and exercise! It is not easy , but you can do it and it’s worth it. 
Have you been given Methotrexate?