PMR and the taper

Very comforting and informative, thank you! I have not been officially diagnosed for PMR but have all the symptoms you’ll have discussed. I believe I’ve had several episodes over the past 5+ years but that pain was for the most part in my hips and back. On my 63 bday I went to bed with what I thought was a sinus infection in my head but awoke to pain in head, neck and shoulders. I’d had pain in these areas before but nothing to this level.
While I await more testing I’ve begun to dial in on the prednisone amount needed to manage / function and also the mental aspect, challenging! I’m not sure how I triggered this but my bloodwork had been getting better by the month due to strict diet management provided by my health and wellness Dr.

My wife and I got Covid in Dec of 2019. My neighbor had just gotten back from a three week trip to china and was very sick for most of his visit. At the time he was 39 so it knocked him down but nothing like it did to us, at the time 52 and 57. My wife ended up with heart failure, lost 60% use of the left side of heart. I can’t pinpoint my first girdling experience but I really think it was during or shortly after having Covid. Has anyone else experienced the possibility of Covid correlation to PMR? By the way, in Dec of 2019 we did not know the term covid yet but it’s been proven to go back as far as Nov 2019. That’s right, we got it fresh off the boat, lucky us!

Very happy to have found you’ll, gl!

What are you doing to tackle the root cause of your PMR? Prednisone is not a healing drug, as you know. I had PMR and dealt with the root causes and was off the prednisone in 12 months. I would suggest getting 1mg and 2.5mg tablets as well. This way you can also experiment with dropping .5mg at a time. Most rhuematologists simply prescribe pills, they don't offer programs for solving the root cause. You should be in control of your own taper. Only you know and understand how your body is reacting to lowering your dosage.

Welcome @tyman23, Sorry to hear you've joined the PMR club but happy you have found Connect. Lot's of member experience here to help with any of your questions. If you haven't already seen these discussions, they have a lot of good information.
-- Comprehensive Overview Of PMR: https://connect.mayoclinic.org/discussion/comprehensive-overview-of-pmr/
-- How to Slowly and Safely Taper Off Prednisone but ... no set rules.
https://connect.mayoclinic.org/discussion/how-to-slowly-and-safely-taper-off-prednisone-but-no-set-rules/
There are also quite a few member discussions and comment related to PMR and COVID if you want to scan through them - https://connect.mayoclinic.org/search/discussions/?search=COVID%20and%20PMR.

You mentioned head pain. Head pain can be an indication of Giant Cell Arteritis (GCA). Is your head pain like a headache or tenderness in the scalp or temple areas?

It's quite common to have some slight pain or aches after a reduction, and if it's not a flare, it should reduce or be gone in 7-10 days. A flare doesn't settle and the aches turn in to persistent pain which gradually (or quickly for some people) increases. My doctor considers a flare to be pain which does not resolve and increases, along with an increase in inflammation. You may be just having reduction aches.

As suggested by @johnbishop , it's very useful to keep a daily log of pain from 1-10. Aches from reductions for me never really went above 1/10. The one flare I had last year got to 5-6/10 pain and blood tests showed inflammation had risen, so it was time to increase the prednisolone dose. Since resuming the reduction, I'm at 3.5mg with no further flares. In my opinion, if you can avoid adding another drug that comes its own new side effects, all the better.

Give it a week. I experienced light pain along the way sometimes for a few weeks after a reduction. Keep working on your range of motion, maybe take a Tylenol and be patient.

What did you find your "root causes" to be? Curious. Thanks.

Radically changed my diet to one that involved eliminating everything that is inflammatory or that could be a cause of leaky gut. No animal protein, no glute, no dairy, no oils, no alcohol, and nothing inflammatory. Only foods that promote healing.

It is part of the Paddison Program. Clint Paddison healed himself of RA and developed the program. He now uses the same method for many types of autoimmunes. Including PMR.

Good question ... I was wondering what the root cause was too. Stress from any number of things is said to contribute to immune system dysfunction.

Flares are said to be triggered by stressful events. Avoiding stress is hard to do but "lifestyle changes" help people to cope with stress better. I think there are ways to reduce the inflammation that stress can cause. Diet and exercise along with better sleep habits can all help to reduce inflammation which can be beneficial.

The root cause of PMR isn't clear to me and I don't think anyone knows exactly what causes PMR or autoimmune disorders in general.

Treatment with Prednisone only addresses the symptoms of PMR but doesn't address the root cause. Prednisone never cures anything and is somewhat like putting a bandage on the problem or sweeping the problem under the rug.

What I have learned from my experience with PMR is that IL-6 is implicated in the pathogenesis of PMR. The biologic that targeted the IL-6 cytokine seems to address the root cause of PMR for me. However, I'm aware that the same treatment won't work for every person with PMR. Technically, I still have PMR. I don't need Prednisone anymore. I'm still being treated but I don't feel like I have PMR anymore.

My rheumatologist says my immune system isn't likely to ever forget about what it has been attacking for so many years. For some reason ... that seemed like an awful thing to say but it was probably an honest thing to say.

Dr. Terry Wahls also has a Protocol. She lives where I live and worked at the same hospital where I worked. There is something about the leaky gut theory that appeals to the medical community. Implementation of the strategies are difficult to do and patients aren't overly compliant.
https://terrywahls.com/
She is a real life person and is somewhat of a local celebrity. There are also skeptics. She talks about her experience in a video in the above link.

Thanks for the info.