Clinical Information or Fishbowl?

My endocrinologist wasn't exactly an "adrenal specialist" but she had insight into the problem with adrenal insufficiency. She encouraged me to stay on a low dose of prednisone (3 mg or less) and not to increase my dose unless it was absolutely necessary. She expected that I wouldn't feel well until my cortisol level improved. Knowing what to expect made it easier for me.

As it turned out, all the tapering strategies I tried weren't that helpful because I would generally increase my dose at the first hint of any discomfort. The discomfort was similar to the pain I felt when PMR was originally diagnosed but not debilitating as long as I took 3 mg. Mostly my symptoms were extreme fatigue. All my symptoms were labile and even my BP was erratic. I think this stems from the lack of regulatory effect that cortisol has on many body functions.

I think my symptoms on low doses of prednisone were a combination of PMR and adrenals insufficiency. The biologic I was taking had the PMR part covered so I wasn't too worried about a PMR flare. Staying on low dose prednisone for an extended period of time allowed some recovery time for my adrenals. As my primary care doctor frequently said, my medical problems were "multifactorial."

The most amazing thing was not having taper after I stayed on 3 mg for 6 months. I was instructed to stay on 3 mg for as long as it took for my cortisol level to improve. Once my cortisol level was "adequate," my endocrinologist said I could simply discontinue prednisone -- no tapering required. I did a fast taper --- 3 mg to zero in a week.

My endocrinologist also said I could go back on prednisone at any time if there was a need. She didn't specify what the need would be but requested that I tell her if I ever needed prednisone again. I assume she was going to help me decide if prednisone was really needed or not.

It was surreal when I had a massive flare of uveitis shortly after discontinuing prednisone. My ophthalmologist said I needed 60 mg again. Fortunately, I only needed 60 mg of prednisone for about 4 months and I tapered off again ---so much for slow tapers. My cortisol level was still "adequate" since the 60 mg of Prednisone was only used short term for uveitis as compared to long term use for PMR. Lots of medical research says long term use isn't good.

I still take a biologic for multiple autoimmune conditions but PMR might be in remission.

I am not one of the majority you write about. I have been on and off prednisone for 30 years and currently one. I like prednisone. It really works for me with the pain of PMR and arthritis. I am 78 yo and get a bone density scan every year and I am still normal even though I am not taking Flosomax (sp) as my rheumatologist has suggested. Even though I have normal bone density my rheumatologist says I have a 10% chance of a fracture. I guess if I have a 10% others much be much worse since I am normal in that department.

Thank you for that perspective!
Do attribute anything to the bone density success. I've had two normal bone density tests, which my doctors say is because I am still doing weight resistance activities.
When you came off the Prednisone, was there a certain level of dosage that seemed to be a "sticking point"? What was your experience with that
In terms of how the Prednisone makes me feel energetically , and the pain
relief I would stay on it! It's the potential complications, that provide me reasons to struggle to get lower dosages and eventually none.

In getting off of prednisone, I have many times got down to zero for months then the pain would return. This happened so often that I went on 2.5 mg of P and for 4 years was without pain. Then I needed to go to 5 mg of P. We are in the process of trying other anti inflammatory drugs. Hydrocholoquine didn't work for me. Now I am trying sulfasalazine.

Until PMR was diagnosed, I had no problem tapering off prednisone … sometimes from 100 mg to zero on a month or two. That was when my only diagnosis was reactive arthritis with uveitis. Flares of uveitis would happen every year or so but went into remission with a high dose of prednisone followed by a fast taper.

PMR was a new beast. I wouldn’t say PMR was more painful.. I didn’t need a higher dose but I was told I would need to take prednisone for at least a year. I couldn’t taper off prednisone for 12 years after PMR was diagnosed.

My only question is your age when you stopped prednisone or other anti inflammatory drugs?

PMR was diagnosed when I was 52 years old. I tapered off prednisone at age 67. I’m almost 70 now.

Actemra was tried 4 years ago and I still do a monthly infusion.

To Stevieb; I am very happy to be in the fishbowl as you refer to it. When I was diagnosed in Jan 23 with a disease I had never heard of and with no test to confirm the diagnoses, I was at loose ends. At 81 the only serious illness was a gallbladder removal in 2005. mAfter about 90 days on prednisone and feeling much, much better I tried to search for information on PMR and found it on the Mayo Clinic forum. Some much information from folks who have been dealing with thing for years. John Bishop and DadQue who have really done their homework. I found out about Kevzara and shortly after it was approved for PMR my PCP began looking into it. I was on Kevzara and 2.5 prednisone from October 23 until Jan 24. Kevzara only until Feb 24 and now off everything. The posts I have read and the posts I have made were definitely part of dealing with this. So, I am enjoying swimming with the Mayo fishes but not literally.

I agree. I have a lot of gratitude for this forum. As a Newbie I wanted to put into proper context the scope of the moderators interaction and the clinical overview's ability to correct misinformation and/or point to reports and studies.
I was frustrated before joining the forum, with the Practitioner's available to me, lack of study and clinical interest in recovery from PMR or at least the strategies available to allow the body "a reason" to produce it's own
Cordisol as long as it was already being provided.
Since writing that post I have been happily overwhelmed by great source reading links!

I concur, @stevieb. It appears that your call for evidence-based information along with fellow patient experiences went well answered, especially from @dadcue @nyxygirl @jfannarbor. As @wilmingtonemperor mentioned, it would be foolish to leave @johnbishop off this list. He is stellar at searching Google scholar, Mayo Clinic and more for trusted, evidence-based information as well as connecting like members together.

I firmly believe (or I wouldn't be the Community Director of Connect) that patient exchange is highly valuable for a number of reasons. Patients have "skin" in the game so to speak and are tenacious seekers of information and solutions. As a collective, patients have power in numbers to search for and share information from multiple sources, doctors, the literature, patient eduction sources, personal experiences etc. The integrity of the information shared is maintained by a number of collaborating mechanisms:
1. Technical triggers that keep spammers out of the community.
2. Moderators and volunteers who monitor the discussions.
3. Active members who question others about the information they shared for better understanding and clarification. We all learn together.
4. Active members who report misinformation or spam if they got through the mechanisms of 1, 2, and 3.

If you see misinformation or someone who needs help or a typo that could lead to misunderstanding or anything that needs a moderator's immediate attention, please report it.
1. Click the 3 dots at the bottom right of the message.
2. Select "Report this comment".
3. Explain in brief why you're reporting the post and click Submit.

Now, to share my bit to contribute to the conversation. Check this out from 2024.
- Mayo Clinic Talks: Rheumatology Edition https://ce.mayo.edu/content/mayo-clinic-talks-rheumatology-edition
Mayo Clinic Talks is a podcast series targeted to the primary care clinician community. Episode 6 (31 minutes) (February 8, 2024) focuses on PMR.

"Episode 6: What primary providers need to know about Polymyalgia Rheumatica
Polymyalgia rheumatica was first described in 1966 as a case report. It can have a wide range of symptoms and at times, can be challenging to diagnose. As with most rheumatologic disorders, the exact cause isn’t known. While there are no specific laboratory tests which establish a diagnosis, there are some that are very useful. One of the most important features of polymyalgia is its relationship with vasculitis and temporal arteritis. In this podcast, we’ll discuss polymyalgia rheumatica with rheumatologists Cornelia M. Weyand, M.D., Ph.D., and Kenneth J. Warrington, M.D., from the Mayo Clinic. We’ll review the typical presenting symptoms, how to establish a diagnosis, helpful laboratory tests and its management."

You can find Mayo Clinic Talks on your favorite podcast app like Apple podcasts, Spotify, Podbean, etc.