Prednisone and Pain

Morning
I have been on prednisone for about 3 years ranging in doses from 15 to 35mg. I have been tapering for the last 18mths off the 35mg i was on that for 6mths so tapering has been challenging but able to do it by using liquid pediatric prednisone in less than mg increments.
My CRP levels are great i am on 2mg daily due to taper again. Although my CRP is great i suffer from hip and shoulder pain, it is evident on waking and when getting up from a sitting position especially after driving i know most of you will agree it is typical PMR pain, problem is why is my CRP normalising, unfortunatly i live in a split level home and my sewing room is in the bottom level i find i need to sew early morning and quit by 2 pm each day as the stairs are my major problem by the end of the day i literally crawl up the stairs as my legs cannot do it unaided. I feel that when i place my foot on the stairs my leg is not going to support me and the hip pain is horrible. I saw my Rhuematologist this week and her respinse was keep tapering and a cortisone shot in one of my hips (worst one) for buritus. Does anyone is experience this level of disability? It is truly affecting my life daily and makes all ADL's difficult if not impossible. Is the stairs problem pain normal with normal CRP?
Just looking for others experiences?

I understand how you feel. Prednisone helped in higher doses without question but did not bring significant relief at 7.5mg. I’ve been at this level for years. Frustrating.

I have constant but bearable pain in my leg muscles and buttocks at all times. Sometimes my legs feel like one or both is going to give out. It is difficult to get up from the floor after exercise or housework.

I’m sorry Maggie. Yes that is what I experience as well. Before I could just get up but then I needed to use furniture or something to assist. I just recently had my prednisone increased again so at the moment feeling “ok”. Not pain free, but more manageable.

Same for me. And pain in my shoulders, especially when getting dressed. It is so much better than a year ago, before Pred, however. At least I am mobile. And, I have decided tolerating some pain is better than more Pred.

I have to chime in on this one. My labs have been normal also and my top half (was mostly in my biceps) is normal but my legs are a mess. My thigh muscles hurt under load tremendously and are very stiff. They don't hurt at rest or if they are moving and not weight bearing. I bet dollars to donuts that my rheumy isn't going to buy PMR in only the lower half of my body. And I don't want any more pred anyway. I have glaucoma and my opthomalagist would freak. But what the heck is it? I too have to crawl up the stairs and I come down on my butt. Not too glamerous.

Exactly THANK YOU!
Movement only pain sitting on my behind is no pain moving it is there straight away, I want to be off the prednisone no questions about that but i also want to know is this PMR and is this the best it gets? The cortisone shot she gave me in one hip has not changed anything, i will give it another week as she said it can take 2 weeks but simply knowing if this is PMR recovered pain and is it my new normal for life?

Several things I have come to believe: Nothing stays the same, and Everyone and everything has something to teach you. There is nothing "normal" about what we are going through. Learn all you can, about this disease and your body. Try what others have tried and try some new things. We are all on a quest. And you are not alone.

Naltrexone (for opiate addiction) has been around for a long time and is inexpensive; therefore drug companies are not going to sponsor trials to determine if its low-dose form is efficacious--there's nothing in it for them. Thus many physicians cautiously ignore this medicine. If your doctor is one of those, and you wish to try LDN to help get off prednisone, you can offer this Pub Med article, which indicates 1. that it works 2. how it works.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3962576/

Excellant article. In my portal to my rheumatologist I post the title of the article in hopes that my rheumy and nurse would at least glance at it. It is frustrating trying to get knowledge of this drug "out there".