Connect
← Return to Off Prednisone but still feeling new type of pain
Discussion
Off Prednisone but still feeling new type of pain
Polymyalgia Rheumatica (PMR) | Last Active: 4 hours ago | Replies (77)Comment receiving replies
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.
Replies to "Thank you all for your very helpful comments. I do wonder...are most of you just accepting..."
Connect
@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.