Normal response after 5 days on prednisone?

"With testing, PMR was declared in remission at 10."
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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.
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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.

Thank you. That is my concern not having complete relief immediately and throughout. I guess everyone is different. I appreciate your input. Glad to hear of your success.

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.

I will not make any adjustments to my meds until I speak with my rheumatologist.

I am an example of someone who needed a much higher dose than the usual to find relief. I started at 15 mg, then worked my way up to 40 mg before I felt significantly better. I saw a rheumatologist ten days after my PCP diagnosed me, and she confirmed that it was PMR. Tapering from such a high dose has been difficult, and I’ve had to backtrack a few times. After nine months I am now at 9 mg but sed rate is creeping up and I think I might be told to increase prednisone once again. I do have severe osteoarthritis, which tends to muddy things. I agree with others about always consulting your rheumatologist before making a change, although at times I have pushed back and she usually gives her approval. Treating this disease is very difficult as often there is no clear path. Good luck to you.

I'm another person that worked up to a starting dose of 40 mg after being diagnosed with PMR. My rheumatologist diagnosed me and she recommended starting at 25 mg but instructed me to "find a stable dose that worked." I worked my dose up to 40 mg. I didn't want to take prednisone very long so I quickly tapered down to 30 mg.

At my next visit, I told my rheumatologist that 30 mg was working "reasonably well." My inflammation markers were checked before my rheumatology visit. My rheumatologist looked at my labs and seemed surprised. She said my inflammation markers were still high on 30 mg and told me to increase my dose back to 35 mg and start there.

The rest of that visit was about how to taper off Prednisone. I had plans to take Prednisone for a "month or two" . My rheumatologist said I needed to plan on taking Prednisone for a "year or two" and maybe longer. It turned out to be much longer... closer to 12 years.

After 12 years and many relapses, my rheumatologist said my case of PMR was "complicated." When a biologic called Actemra was started, then it only took me a year to taper off Prednisone.

So sorry to hear that you had to forgo that for all those years but looks like you’re heading in the right direction….finally. Thanks for sharing. Something I will keep in mind if my treatment stalls. I’m on 20mg now and seems to be working. I’m still a little sore (3out of 10) in the am and tapering on the 20th to 15mg. 🤞
Wishing you continued success.

Thank you. I did speak with my rheumy today. I was originally at 15mg but she upped me to 20mg for another 2 weeks (because of the am soreness) then will taper back to 15 mg for 6 days until I see her next. She’s sending me for X-rays (hip, knees, shoulder) and a sono of my shoulders just in case arthritis maybe complicating the diagnosis. As you may have seen I’m still a little sore in the am before taking the dose. She said I should be feeling total relief even in the morning but when addressed that another PMR patient split her/his dose she said I can take the main dose in the am and a smaller dose at dinner time but don’t think she’s calling in a smaller dose (I’m not comfortable cutting the 10mg up). I’m trying to be patient so will address it again (and ask for 1 mg pills) when I meet with her next if I’m not better in the am. Again, thanks for your input. Everyone sharing their experiences have been so helpful.

It wasn't anyone's fault. Everything was tried that could have been tried. There were additional problems but PMR was my "primary diagnosis."

Your doctor sounds very wise to me. Splitting my dose helped my early morning pain. I would wake up at 3 a.m. every morning in extreme pain. When I split my dose and took 2/3 of my total dose at 8 a.m. and 1/3 of my total dose in the evening at 8 p.m. that allowed me to sleep all night without pain. My total daily dose was actually less when I split my dose. I was able to sleep all night without pain and being able to do that was a blessing.

I wasn't a fan of pill cutting either. I had pills in every denomination available: 20 mg -- 10 mg --- 5 mg --- 2.5 mg --- 1 mg tablets were all ordered for me when I needed them.
https://dailymed.nlm.nih.gov/dailymed/fda/fdaDrugXsl.cfm?setid=63e2d3c7-8120-401b-a826-c98754797026#:~:text=PredniSONE%20Tablets%20are%20available%20in,10%20mg%20and%2020%20mg.
You can see that Prednisone is used for many things. I had multiple autoimmune disorders so that complicated things. I had inflammatory arthritis and PMR. It is good that your doctor is looking for other things. PMR responds to prednisone but that doesn't confirm a diagnosis of PMR.

A diagnosis of PMR doesn't mean you can't have something else come along with PMR.

"Having one autoimmune disorder increases the risk of having more than one."
https://pmc.ncbi.nlm.nih.gov/articles/PMC3150011/#:~:text=Multiple%20autoimmune%20syndrome%20is%20a,%E2%9D%91