A month into my diagnosis with PMR

Good morning to all our family,
Well that was tales of a journey. Not much into proof reading I guess..
Day one on reduction to 15mg and thank God for the continued relief, but unsettled about what going on with my weathered and worn body. Review is a good starter, pain and swelling has disappeared over the course of the last several weeks. That's good. But things are perhaps unnoticed and unanswered my Cpap stuff has improved the numbers that is. Went from 5 thru as high as 9 incidence per hour to .09 is. But the hours if sleep has been greatly reduced to around 6 hours to the previous 8 or 9. Just another health issue to interject of a perhaps weathered and tour old person..
But as I look back to when I had ever been this sick was upon my return from Vietnam. When then much younger was diagnosed with Hepatitis, but much like this diagnosed Warewolf of the immune system not 100% sure...but much like symptoms tired and feel OK for the best of 3 hours of the day. And at the time it just had to run its course.
Point is still diagnosis is not 100% and am in a what appears to be a heath care (holding pattern). The US was the place the world's sick came for answers and treatment, but not so much since Covid, vaccinations, an Paxil treatment.
Back to the Heart of the Matter, still feel like I'm running on empty in the mid afternoons on the 15mg dose. but again in a much improved place than several weeks ago. And really think this Stuff has been with me for some time, but a very slow cheaper. Lost of balance, joint swelling, lack of energy and muscular pain monster both arms and accross my shoulders and hips, fat hands and puffy finger...
Marching onwards and thankful for another day. As the fall colors brighten the dark side of this affliction.
Spelling, grammar, and composition were never one of my favorites nor qualities. Well wishes to all.

I'm sorry, PMR is no joke. I was diagnosed about 25 yrs ago at age 40. I also have factor V Leyden ( blood clotting disease) and osteoarthritis everywhere. So I have a few pain issues. I used natural pain relievers. Arnica, Japanese mint oil, helucrysum, frankenscense, Melissa. And others, CBC oil topically and internally for sleep/pain. Capiscas8n cream. Diet, no gluten, dairy, night shade especially. Tomatoes, very little sugar, no carbonated drinks, chicken (is a definite NO). organic as much as possible. I filter my well water. It's an entire lifestyle change..... it's not one thing, and due to my blood clotting disorder steroids are not an option for me. Good luck it is a struggle, but remission can be obtained. But is always lurking.

I like your assessment that pmr is simply the body’s way of saying “more cortisol please.” While the body produces more naturally in response to stress, clearly something is haywire, and it is not enough or working properly, otherwise why do we respond to prednisone so well and why is a good response to prednisone diagnostic for pmr?

Good morning
A little over a month into prednisone currently at 15mg and all is OK, except the weirdness my body feels.
Question: I have an insect bite sight are that doesn't seem to be healing with normal treatments and time. Redness an some heat associated to the area after a week...so I thinking the prednisone has diminished my body's abilities to heal normally.
My guess I probably need a antibiotic to assist? Just another path perhaps someone's been down or maybe will soon.
Sleep duration has lessen, currently between 5 and 6 hour and feel rested and not needing to return to bed..
Hope everyone has a great weekend, the fall colors here are still pretty vibrant and pleasing to the eye. Best wishes to all.

@jiminmich, Is the red area around the insect bite growing bigger? You might want to use a pen or marker on the edges of the red area to see if it's getting bigger which might mean an infection and require an antibiotic or treatment. I would definitely talk to my doctor if the red area is getting larger. I've used Neosporin on insect bites and cat scratches and it seems to help.

I might be the only person who thinks prednisone might have caused me to have PMR because of adrenal insufficiency and a low cortisol level. I was having extra stress from training hard for a long distance bicycle ride when PMR symptoms first started.

I was taking prednisone intermittently in high doses with other autoimmune problems. I was always able to taper off prednisone quickly in spite of starting doses between 60-100 mg. My ophthalmologist said I was "skilled" at tapering off prednisone because I did it frequently when being treated for uveitis.

I didn't realize that prednisone was suppressing my adrenal function. I felt like prednisone was "protecting me." Uveitis can cause vision loss. Severe back pain usually came with a flare of uveitis but that was diagnosed as reactive arthritis. Since prednisone relieved the back pain too, I self medicated with prednisone and didn't bother with seeing a rheumatologist.

I worried about what would happen if I didn't have any prednisone to take. That day arrived when I experienced pain in my shoulders and I didn't have any prednisone. My ophthalmologist was prescribing prednisone to me for uveitis but I didn't have uveitis. I couldn't ask my ophthalmologist for prednisone for shoulder pain. I wasn't seeing any other doctors at the time.

The shoulder pain spread and became widespread. When my wife had to help me get dressed, she called her primary care doctor. I was seen by my wife's primary care doctor because I didn't have one. One thing led to another but my wife's primary care doctor referred me to rheumatologist when I told her that I would be okay if she prescribed some prednisone to me. She just looked at me in disbelief.

A rheumatologist prescribed me some prednisone temporarily but she thought I was having a flare of reactive arthritis. She said reactive arthritis wasn't treated with prednisone even though I told her prednisone was what I always took.

Eventually PMR was diagnosed. My rheumatologist said I would need prednisone for a "long time" and not for a month or two. I was happy to have the prednisone but I tried to taper off prednisone in a month or two like I usually did. It was impossible for me to taper off prednisone and I was still taking prednisone 12 years later.

I had a chance encounter with someone who had an adrenal crisis from taking prednisone on a long term basis. She explained to me what prednisone did to the adrenals. She also explained the HPA axis and how it feels when your cortisol level is too low. She thought some of my "flares of PMR" were symptoms she experienced before her adrenal crisis. I did say my flares of PMR resulted in a "pain crisis." She understood why I would take more prednisone but she wasn't convinced I was having a PMR flare.

If you have managed to read all this, the following is the dialog I had on another online forum for chronic pain. Warning--it was a long discussion over many weeks.
https://www.healingwell.com/community/default.aspx?f=16&m=4073463

Thank you, was using Hydrocortisone cream not getting much of a response with that. Really not sure the origin but acts like a tick or spider bite, begun with a blister when first noticed. Thanks again.

If it continues and starts spreading, you could be developing cellulitis which is a very urgent matter and needs to be treated with oral antibiotics asap.

Hi Ed,
I haven't gone through all the comments since you first posted last month, but wanted to mention that it's a challenge continuing with a full time job while dealing with PMR. I have managed to keep working full time through my 7 years of PMR (now down to 1 mg dose of prednisone) but it's required carefully watching my medications and not working too hard/too intensely to avoid pushing myself into a flare up that can push you into worse shape than when you started. Of course at the beginning the main focus has to be finding the correct initial dosage to control your pain. My mantra is "The lowest EFFECTIVE dose". Reducing the prednisone dose over time isn't about speed. It's about effective doses that keep the pain and inflammation under control. Often that means reducing slower than what your rheumy will want. With PMR you are only going to have so much energy to do your job each day. Use it all up and that's it for the day. You don't rebound after resting a bit. The well has run dry and won't refill until the next day after you've slept/rested overnight. PMR doesn't follow the normal rules for a worker. Pacing is very important. After reading a number of forums over the past 7 years, I've found that continuing to hold a full time job throughout ones time with PMR is relatively rare, but it can be done. Probably not at the levels you're used to, though. I would think you might still be able to play sports once you get the pain under control, but maybe not at the level or intensity that you'd like. If you find it pushing you into a flare with all the joys of pain and inflammation, you'll know changes have to be made. Don't expect a "cure". Do expect to learn to live with PMR until someday it's gone.

If it started as a blister it likely is a spider bite, not a tick bite. Spider bites can cause some necrosis and take a long time to heal.
I had a tick bite this past July and sent the tick off to be tested, came back negative for the usual diseases but the bite is still red and itchy; I blame that on prednisone slowing my immune response. Just found another tick today and will send it off for testing. Having had a seriously debilitating co-infection with Lyme disease and Babesiosis 8 years ago I no longer take any chances when it comes to ticks.