Connecting the Dots with PMR

I must say, if you can connect the dots, you will be a $$$$$$
My experience is all because of diet, exercise, temperature, barometric pressure, current medication, all other medical numbers and drugs and supplements we take.
Lastly, which side of the bed you get up on.
Sorry to be so vague, not meant to be silly.

@tweetypie13
Lol, I will immediately start sleeping on the other side of the bed. Who knows? Perhaps it will help 🙂

As for diet I would encourage you to give up refined sugar as soon as possible. It feeds inflammation in your body and every bite with refined sugar in it is simply feeding the PMR beast.

I realize the holidays are not the time to do it, so plan asap based on your life and activities. I did it three years ago, don't miss it at all. Also my Lipid Panel looks better than it has in 25 years.

I have also cut way back on breads and pasta. Simple carbs are just another form of sugars for your body.

I believe it has helped with my PMR, but more importantly I know I am healthier because of it.

PS - I still have wine most evenings with dinner.

Does your exercise routine include strength training - lifting weights? I've noticed I'm "PMRy" as I like to call it, after lift days....

I’m at a loss connecting the dots. I had a flare this week on top of a nasty cold. Haven’t had a cold in years, now worried my immune system is seriously affected. I’ve been on Prednizone for a year this month. I was doing good with my taper, down to 2.5mg from 20mg a year ago. Now it all seems to be going backwards. Fingers crossed it’s a temporary setback.

I've worked my way through 10 years with PMR and after the first 5-6 years found some points that have carried me through very well.

First, I have held to a very, very slow reduction of my prednisone dose. Typically I only reduce 1/2 of a mg every 3 months. Slow but I've avoided flares these last years. Plus I have a rheumy that has bought into this approach. If I've felt any hint of the PMR acting up I've backed off the reduction and gone back up 1 mg at least to smooth things out again. Some good days followed by a bad day or 2 tells me that I've dipped a fraction too low on my dose. Personally, any kind of illness even a cold has been cause to increase the dose again and lose ground on the prednisone reduction schedule.

It's been a long, slow road for me but after multiple major flares in the early years I've been fine with looking at the long term approach. I am currently at 4 mg and hope to hit 3.5 by the end of February. If not, it isn't the end of the world as long as I'm feeling well. My early rheumys were so insistent that I be off prednisone in 2 years and did me a big disservice, causing some awful flare ups. Some get off in a couple years. Others like myself have to look at the long trip. My current rheumy says if I get to 3 mg that she is fine if I stay at that level forever, that it's such a minimal dose that the prednisone side effects at that level are little or none. Good luck!

@raven1955
I would echo everything you posted because 12 years of PMR was a long, slow road for me as well. Unfortunately, I needed 10 mg to feel decent and I had a flare every time I reached 7 mg. Eventually, I was able to connect all of my dots.

I continued working from the age of 52 when I was first diagnosed with PMR until I retired at 62. It wasn't PMR as much as "overwhelming fatigue" that made me want to retire. Maybe I was also depressed because of too many medical complications.

The only difference between our journeys was that my rheumatologist thought I was "too young" to take Prednisone for the rest of my life. However, if I only needed 3 mg of Prednisone that amount of prednisone wouldn't be too concerning. I wasn't ever pressured to get off Prednisone but all my doctors "strongly encouraged" me to continue to try to taper off. Eventually I told my rheumatologist that I wasn't going to try anymore unless there was something that could replace prednisone.

My alternative to prednisone came in the form of Actemra (tocilizumab). Suddenly a faster taper was possible. At one stage I tapered my prednisone dose by 1 mg per week after Actemra was started. The thing that prevented me from tapering off prednisone was revealed at 3 mg of prednisone. That was when my cortisol level was too low for me to taper off Prednisone. My primary symptom of adrenal insufficiency was overwhelming fatigue. I also think flares happen when cortisol levels aren't sufficient to regulate inflammation as we taper our Prednisone dose lower. Either cortisol regulates inflammation or we need to take more prednisone.

Fortunately for me, Actemra kept PMR in remission while I stayed on 3 mg of Prednisone for 6 months. An endocrinologist was monitoring my symptoms and labs while I stayed on 3 mg. When my cortisol level finally normalized, an endocrinologist told me to discontinue prednisone. As long as PMR stayed in remission with Actemra and my cortisol level was normal, the endocrinologist told me to discontinue prednisone. The endocrinologist said there was no need to taper from 3 mg to zero as long as my cortisol level was normal.

My endocrinologist was concerned about whether or not my adrenals could produce enough cortisol if something very stressful happened to me. For this reason, she said I should restart Prednisone for "any reason" if I felt the need.

I haven't needed any prednisone for almost 5 years. Technically, I still have PMR but Actemra is doing a good job at keeping things in remission. Unfortunately, my PMR symptoms return when Actemra is stopped so I still need Actemra. An endocrinologist is still involved in my care because of "metabolic syndrome" from long term Prednisone use even though I have been off prednisone for 5 years.

It was easier for me to connect my dots after I was able to discontinue prednisone. I'm now 71 and doing much better since prednisone was discontinued.

@lagpmr2024 This poses a difficult challenge because the Prednisone used to treat PMR accelerates osteoporosis, while weightlifting stimulates bone growth.

@superfly999
Check your previous DEXA scans before starting prednisone.
In my time on prednisone, ONLY 1 of my 5 measurements dropped significantly. It was abt 10%. So, my pcp and I decided that if if dropped 10% over 10yrs, and I’m 79 yrs old, let’s not get excited/worried. All my other measurements are osteopenia.

I commend you for your pursuit of trying to connect the dots, I think this curiosity on our own behalf is very important. I am in a similar space and there seems to be no rhyme or reason to symptoms/flares etc.

More recently I have been studying the role of the microbiome on health, particularly relating to gut dysbiosis and immunity. I recently did a stool test called GI Map, yes gross but very informative that shows exactly what bacteria (good/bad), viruses, parasites/fungi etc. may be in the GI tract or traces from past infections etc.

Turns out I have higher than usual strep and staph in my GI tract so am investigating this avenue further. I'll be going to my Dr. this Friday who will likely think I am bonkers for bringing this to him but will ask to see if these bad bacteria might be seeping into my bloodstream via a leaky gut lining (low Secretory IGa levels from this test point to issues with my gut lining as a defensive layer that needs to be repaired, and is a long process per my naturopath). Again, no idea if this is even relevant just another avenue to explore.

This is such a great forum and so helpful to me emotionally and mentally on this stressful path, so thank you all!!