Connecting the Dots with PMR

@stonewheel So sorry to hear of your blood clot. There were observational studies with Prednisone and clots, but no proven cause and effect. The higher the Prednisone dose, the greater the risk. The Arthritis Foundation has a blog on that question if you are interested. As a retired family doc, I was not aware of the association, so good to know. Best of luck and hopefully, the clot resolves soon.

@dadcue thank you. The study you linked is very informative. IMO, every doctor treating with steroids should be aware of this study.
I did have deep vein thrombosis DVT (left leg) which led to a pulmonary embolism PE after a hernia surgery in early 2021. My surgeon, the surgery center and my PCP closed due to COVID-19.
No communications returned from them whatsoever. The hospitals were overflowing and I had to “dance with the grisly” at home. The clot(s) bounced around my chest for a month and finally went away by itself. No blood thinners, no help, no nothing but hope, fortune, and God’s grace. I lived.
Your level of success is encouraging for me.
This hospital is full with flu patients so I was in ER all night and at noon today a room opened up in an Observation Unit/Wing. Prednisone 15mg twice daily resumed along with a Heparin drip blood thinner and Omeprazole for my gut. The surgeon would rather not operate due to the risk.
If the Heparin works, they’ll send me home with an oral version then a blood test visit after one week.
The only pain I am experiencing is constant muscle cramping in my extremities (feet, calves and thighs.) It’s non-stop.
I appreciate your feedback and experience although I wish you hadn’t had the experiences.

@stonewheel

What was more incredible was that I didn't have any chest pain. I didn't think anything was wrong with me when someone at the bank said I better go to the urgent care center next door. The bank teller said I didn't look well and I seemed "winded." I told the bank teller I was always short of breath and I was used to it.

My PCP was aware of me being short of breath. He did some testing which all came back normal . He wanted me to have a pulmonary function test but I declined that test because my exercise tolerance test was normal.

I created quite a stir when I walked to the urgent care center. I was exhausted but didn't know what to complain about, I wrote "short of breath" as my chief complaint. I was seen relatively soon but not right away. A nursing assistant did a set of vitals and rushed out of the room. A doctor appeared and asked me what was wrong. I admitted to being short of breath but that wasn't unusual.

The doctor said she called an ambulance and wasn't going to let me leave. I made a comment about how she couldn't stop me from leaving. I told her about a meatloaf in the oven that I needed to tend to.

Being the rational person that I am, I thought if I tried to leave, I would not get very far because I was too short of breath. I only mention this because it was truly a "fight or flight" situation and I couldn't do either one.

There weren't any rational doctors in the emergency room who were going to let me leave either. Prednisone had a way of making me irrational sometimes. When they showed me pictures of my chest CT scan ... I thought the CT scan wasn't mine.

@dadcue interesting. This disease just blindsides people. Prednisone makes me irritable. At least, I blame it on the Prednisone.

@stonewheel

You need to understand the "fight or flight response" that occurs naturally in response to stress. Prednisone is an artificial way to elicit this response because it replaces the naturally occurring hormone called cortisol.

PMR might be caused by stress as many people report. The pain might be an early warning signal. I have no doubt that I was under too much stress when my PMR symptoms started. In the beginning, the dots that I connected were looking like PMR with a capital "P"

After Prednisone was started more and more dots started to show up. I tried to connect all of the extra dots because I wanted answers. As more and more dots emerged and I connected those dots ... it became clear to me that the dots were spelling out Prednisone.

In essence ... Prednisone puts the body in a long term fight or flight mode.
https://www.verywellmind.com/what-is-the-fight-or-flight-response-2795194
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When I started thinking in terms of the fight or flight response and how the hormone cortisol works in the body everything started to make more sense to me.

The sequence of events leading up to my stay in the intensive care unit was a turning point for how I thought about Prednisone. When you carefully read the above link you will see --- "The body's blood clotting ability also increases to prevent excess blood loss in the event of injury."

I think prednisone is okay in the "short term" but not so good in the "long term." Every medical research paper I have ever read has said basically the same thing.

@dadcue makes perfect sense. The complexity of human (all multi-celled organisms) amazes me. Please define what you mean by “short term” and “long term” regarding Prednisone.

@stonewheel

My doctor said that is a million dollar question. There wasn't an answer for that question and another one as well. What answer I received was personalized for me.

How long is it safe to be on Prednisone?? --- no answer but 12 years was way too long for me.

How much Prednisone is too much?? -- no answer but 100 mg was the maximum dose that I could tolerate. I actually said 60 mg was my personal limit but my doctor pushed that limit to 100 mg at times.

@stonewheel

So sorry to hear about this and I wish you a speedy recovery.

You probably don't need to read about the details of the blood clots I had while on prednisone. The blood clots in my lungs were described as massive, extensive, bilateral and multiple throughout both of my lungs. I was in intensive care for a few days.

My intensive care doctors congregated outside my door and discussed what might have caused such a pulmonary event. A doctor with many years of experience said he had never seen anything like it before. The way all of the doctors were talking, I wasn't sure I would survive! The doctors were not sure how the blood flow was getting through my lungs. There was a great deal of strain on my heart. A single pulmonary embolism is often fatal.

On a positive note ... my body had an incredible way of cleaning up the mess that was inside my lungs!

I listened to the conversations the doctors had. There was a lot of whispering but I distinctly heard that prednisone was the probable cause. I had prior high blood pressure and cardiac arrhythmias but those problems were likely prednisone related too. I was relatively young with no prior cardiac history before prednisone was started.

My medical records only say the multiple pulmonary embolisms were acute and unprovoked. There was no clear evidence for where the blood clots came from. I was told it was a "cascade of blood related events."

When I got out of the hospital, the plan was that I would need to be on warfarin for the rest of my life. Interestingly, about 10 years later after I got off prednisone, the warfarin for the rest of my life was discontinued. Furthermore, within a few years after prednisone was discontinued, all my other cardiac medications were also discontinued.

The following research is very technical statistically but it tries to control for confounding factors like our underlying inflammatory diseases and other causal factors for cardiovascular disease (CVD).
https://pmc.ncbi.nlm.nih.gov/articles/PMC7714202/
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In the author's summary you will find the following.

"What do these findings mean?
We have provided evidence that individuals receiving steroids have an increased risk of developing a broad spectrum of fatal and nonfatal CVDs and that this risk increases with the dose of steroids and with the duration of steroid treatment.

It was previously believed that less than 5 mg of prednisolone was safe long term, but even at this “low dose” patients with immune-mediated inflammatory diseases have a doubling of their underlying risk of CVD.

New treatment approaches that avoid the need for long-term steroid treatment and have better cardiovascular safety profile are required for immune-mediated inflammatory diseases.

All patients requiring long-term steroid treatment should be prescribed the lowest effective steroid dose and have a personalised CVD risk prevention plan that takes into account current and prior steroid use."

@dadcue Thanks so much for finding the study on CVD with Prednisone use. I hate stats, but did read most of it. As a retired family doctor from Canada, I was not aware of the increased CVD risk and will discuss it with my doctor. I am pre diabetic, so am watching that and last May, my lipids were good, but will recheck on Prednisone. Trying to work out- warm yoga and a warm therapy pool class on a weekly basis. Actually, my PMR is the best in the warmth! So glad you are off Warfarin- my husband has been on it since an aortic valve replacement in 2001.