← Return to Normal response after 5 days on prednisone?

Discussion
Comment receiving replies
@dadcue

"With testing, PMR was declared in remission at 10."
----------------------
How was this done? There is a considerable debate about what exactly "remission" is. This is especially true when a person still needs prednisone. Most of the things I read is that remission occurs when a person no longer needs prednisone. There seems to be a consensus that prednisone doesn't "cure" PMR and only "manages the symptoms." I guess that means if you still need prednisone the underlying inflammation is still there if Prednisone is stopped.

I once asked my rheumatologist after being on prednisone for 10 years to treat PMR what my diagnosis was. I was questioning whether or not I still had PMR. I somewhat accused her that she only prescribed prednisone to me because she thought prednisone was what I wanted. In a way ... I did want prednisone for pain relief but I also wanted an end to PMR and prednisone.

I now have a new rheumatologist after nearly 15 years. My new rheumatologist and old rheumatolgist were colleagues together in the same department so continuity was good. However, when Actemra was started it was an entirely new approach for treating me.

I asked my new rheumatologist the same question about when I wouldn't need treatment for PMR anymore. He said, "at this stage PMR won't ever go away." His explanation involved a tendency for the immune system to develop a "memory" for attacking things it deems to be harmful which is detrimental when a person has an autoimmune disorder.

"Immunological memory is a hallmark of adaptive immunity, a defense mechanism endowed to vertebrates during evolution. However, an autoimmune pathogenic role of memory lymphocytes is also emerging with accumulating evidence, despite reasonable skepticism on their existence in a chronic setting of autoimmune damage. It is conceivable that autoimmune memory would be particularly harmful since memory cells would constantly “remember” and attack the body's healthy tissues."
https://pmc.ncbi.nlm.nih.gov/articles/PMC4067599/#:~:text=T%20lymphocytes%20in%20autoimmune%20diseases&text=An%20important%20characteristic%20of%20the,making%20the%20autoimmune%20response%20persistent.
---------------------

My current rheumatologist has declared that PMR is "in remission" but PMR won't ever "go away" in my case. My inflammation markers do seem to increase again when I go too long without an Actemra infusion. The same was true whenever I tried to taper off Prednisone but I no longer need Prednisone. The criteria that remission is achieved when a person no longer needs Prednisone might be true but I'm still being treated for PMR.

Jump to this post


Replies to ""With testing, PMR was declared in remission at 10." ---------------------- How was this done? There is..."

Thank you for your heartfelt story. I’m sorry there is no cure for you but hopefully you’re able to cope with the side effects and pain.