Off Prednisone but still feeling new type of pain

Thank you all for your very helpful comments. I do wonder...are most of you just accepting that we have to live with ongoing pain and leaving it there? or are you like me who continues to find a solution and end all of the pain? assuming it's all postPMR / steroid damage related. (I'm not talking about other ailments that have surfaced like osteorarthritis, etc). I am wondering if I should just throw in the towel and live on pain killers.

Also, many of you commented that you struggle(d) with extreme fatigue when coming off Prednisone. I recommend working with an Endocrinologist once you get to below 5mg. Mine switched me to hydrocortisone. I tapered extremely slow and had very little fatigue. I did have a lot of fatigue early on while I had PMR and at the higher doses each time I tapered down 10% or so.

@abbeyc

I'm still "recovering" from PMR and Prednisone. I have been completely off Prednisone for about 5 years.

I' have not needed too many "pain killers" since tapering off prednisone. I'm on Actemra which my rheumatolgist said was NOT a pain killer. She also said Prednisone wasn't intended to be a pain killer either because both Actemra and prednisone are anti-inflammatory medications.

I was confused about her perspective but she thought Actemra was doing a good job with controlling PMR inflammation. Then she asked me if I was sure that I didn't need anything else for pain. I think she meant the pain caused by osteoarthritis and other things.

I don''t really expect to be pain free all the time. Even when I was in my prime I was never pain free. I had injuries and infections and things of that nature and my body repaired itself. If it was something serious I went to a doctor who fixed it. I never took Prednisone for pain when I was young. The difference was my pain in the pre-PMR years had an identifiable reason for the pain.

I struggled with PMR for 12 years and took Prednisone. There was never an identifiable reason for the pain other than labeling it PMR. Then I was told to take Prednisone and wait until PMR burned itself out. The whole approach to treating PMR is moronic in my opinion. While the primary treatment remains corticosteroids such as prednisone, researchers are exploring new therapeutic options and the underlying causes of PMR. For me, Actemra seems to get to the underlying cause of PMR and actually stops all of my PMR pain. The rest of my pain has an identifiable reason which isn't that easy to correct.

The rest of my pain is easier for me to understand. I never could understand PMR and I referred to it as "pain for no reason." As long as I understand the reason for my pain it is easier for me to live with it. I don't think there is anything wrong with "pain killers" if you need them. They put limits on narcotics but I think there should be limits on Prednisone too.

@dadcue thank you! You hit the nail on the head! ‘Pain for no reason’ is what I struggle with.
It’s in my nature to want to fix things and seek perfection so this is driving me crazy. Plus I’m spending way too much money on doctors and tests and I need to stop.
Sounds like you have a good doctor. I went to 3 different Rheumatologists and for some reason they never wanted to offer me any of the Biologics even when I asked. they only mentioned methotrexate which I always declined.
Best to you!

@dadcue thank you! You hit the nail on the head! ‘Pain for no reason’ is what I struggle with.
It’s in my nature to want to fix things and seek perfection so this is driving me crazy. Plus I’m spending way too much money on doctors and tests and I need to stop.
Sounds like you have a good doctor. I went to 3 different Rheumatologists and for some reason they never wanted to offer me any of the Biologics even when I asked. they only mentioned methotrexate which I always declined.
Best to you!

How funny the timing here could not be more perfect. I was diagnosed with PMR 3.5 years ago as well. I have gotten to 1 mg of prednisone but with the pain always returns. My Rhuematalogist is convinced it is no longer PMR. My inflammation markers have always been normal throughout the entire process. So she asked me to have x-rays taken of my hips and pelvis area, which is where the pain resides. I have osteoarthritis in both hips and she is convinced this is where the pain is coming from. She prescribed low dose naltrexone 1.5 mm to start then increase to 4.5mg. This drug is available through insurance but only at 50mg dose. It was designed to treat alcoholism, but they are finding at low doses it is helping with pain and inflammation. I had to research online who would make it at a reasonable cost. My first quote was $275 per quarter. AgelessRX is $120 with a prescription. Something worth considering. I have not received it yet but am anxious to see if it works. Good luck to you.

How funny the timing here could not be more perfect. I was diagnosed with PMR 3.5 years ago as well. I have gotten to 1 mg of prednisone but with the pain always returns. My Rhuematalogist is convinced it is no longer PMR. My inflammation markers have always been normal throughout the entire process. So she asked me to have x-rays taken of my hips and pelvis area, which is where the pain resides. I have osteoarthritis in both hips and she is convinced this is where the pain is coming from. She prescribed low dose naltrexone 1.5 mm to start then increase to 4.5mg. This drug is available through insurance but only at 50mg dose. It was designed to treat alcoholism, but they are finding at low doses it is helping with pain and inflammation. I had to research online who would make it at a reasonable cost. My first quote was $275 per quarter. AgelessRX is $120 with a prescription. Something worth considering. I have not received it yet but am anxious to see if it works. Good luck to you.

How funny the timing here could not be more perfect. I was diagnosed with PMR 3.5 years ago as well. I have gotten to 1 mg of prednisone but with the pain always returns. My Rhuematalogist is convinced it is no longer PMR. My inflammation markers have always been normal throughout the entire process. So she asked me to have x-rays taken of my hips and pelvis area, which is where the pain resides. I have osteoarthritis in both hips and she is convinced this is where the pain is coming from. She prescribed low dose naltrexone 1.5 mm to start then increase to 4.5mg. This drug is available through insurance but only at 50mg dose. It was designed to treat alcoholism, but they are finding at low doses it is helping with pain and inflammation. I had to research online who would make it at a reasonable cost. My first quote was $275 per quarter. AgelessRX is $120 with a prescription. Something worth considering. I have not received it yet but am anxious to see if it works. Good luck to you.

@ddonnagirl1 yes you should try it.
My GP put me on LDN (without my Rheumatologist knowledge) because she is less conservative and turns to non-conventional treatments. The goal was for LDN to help get me off prednisone which maybe it did do. Hard to say. I started it 2+ years ago. I’m afraid to go off it because I don’t know what type of pain could return. I may try to some day.

@abbeyc
Did you look into biologics?