Connecting the Dots with PMR

Hello. New here and I appreciate all of the entries that I have read in the headings related to PMR. Thank you.
I take hypothyroid meds (2) for twenty plus years every morning.
I was diagnosed with PMR in October 2025. I’m 68 years old, male, 5’7”, 177lbs.
My history (attempting to connect the dots):
I have a smoothie every morning for breakfast (10 years) consisting of blueberries, strawberries, apple, banana, plain Greek yogurt and aloe vera juice. A year ago I began adding vegan protein powder.
I stopped (30 years) smoking three years ago.
Three years ago I also stopped eating meat except raw salmon and tuna, plus canned tuna. At that time I stopped dairy except the yogurt, cottage cheese and Parmesan cheese. I eat one whole egg every day. No beef, pork or poultry. I eat bean and soy burgers occasionally.
I was scheduled for a knee replacement in August 2025, but it was delayed because of pain in my hips. My hip pain began in April, about 4-5 months prior and I thought it was from exercise and/or stretching that I was doing in preparation for the surgery. The surgeon said that he wanted an MRI of my hips. They weren’t too terrible but he said that both hips also needed to be replaced.
I was overwhelmed and he knew it so he told me to take a week and thenschedule the surgeries.
The curious thing for me was that the actual joints in my hips did not hurt. The pain felt like it was in the tendons connecting muscles to bones near the joints. Then the same type pain began above my calf below my good knee, but not in the joint. Then, both shoulders became painful. That made me question the real cause of the pain because I have two artificial shoulders. Total and complete replacements which were necessary and are now perfect.
After a week, I told my surgeon that I wanted to wait 6 months and then reschedule.
I didn’t tell him but i began taking supplements and doing target exercises to see if I could make improve and not need the hip replacements.
I began taking Marine Collagen Peptides and my major muscle groups really felt like I was body building. BUT (BIG BUT!) my hips, upper calf and shoulders got horribly worse. A long 2-day drive road trip and return was almost unbearable while driving. When I got home, I felt like a beached whale being crushed under my own weight every morning. Sitting and rising from a toilet was nearing impossible. Dressing below my waist was a slow painful effort. The soles of my feet and the palms of my hands felt like my bones were made of razor blades and hurt, hurt, hurt. I stopped the marine collagen peptides, even though everything I had researched said it was good for joint associated pain. I read today on this website that others reported PMR after taking collagen peptides.
Six months ago I bought and began treating toenail fungus on my big toes only with ultraviolet light (15 minutes on each, twice daily.) An inexpensive device that along with an over-the-counter topical liquid worked. No more fungus. BUT, I read that PMR can be manifested by UV light.
I don’t like taking medicines but began taking ibuprofen and acetaminophen which helped a little.
(One year ago, December 2024, I received a flu shot and Shingles vaccines. I’m due for a COVID-19 vaccine booster but will discuss it with my PCP in January 2026, during my next PMR follow-up. I mention these because I read on this site that someone reported that they got PMR after Shingles vaccine.)
That’s my relavent history, I think.
I went to my PCP. I told my PCP about the UV light treatments and marine collagen peptides. He said that he was unaware that either caused PMR or made it worse, but definitely stop using both, which I had already done. He prescribed a steroid pack of Methylprednisone. 6 pills the first day, 5 on the next…, finally 1 on the sixth day.
The second day, I felt cured. I felt great! No pain anywhere. Then, by the next to the last day the pain crept back and I couldn’t wait until it was time for the evening pill that day. I took the last pill the next morning. It did little good. The next morning I was back to feeling that my hips were being crushed by my own weight again. Like before, the pain woke me before sunrise and I suffered until I could take acetaminophen. He told me not to use the ibuprofen.
I had scheduled a follow up appointment with my PCP (as a just in case) and it was the next day. I’m glad I had.
My PCP informed me that he suspected before, and now he was certain, that I had PMR.
He said he treats about 2-3 patients a year with PMR and felt a specialist wasn’t necessary, but that was an option if I desired.
He prescribed 20mg Prednisone, twice per day, with food and Omeprazole to protect my stomach. After 2 days, I felt no pain anywhere again.
One month later he suggested that I try to taper the Prednisone to 15 mg twice a day and see how I felt. The pain began to return so I began taking and still take 20 mg in the morning and 15mg at night. That’s has worked fine.
Now, one month later I plan on trying to taper to 15mg twice per day for a month.
If that is successful, I’ll try 15mg in the am and 10 mg at night.
My PCP did tell me that it might be 1-2 years before I would be fully weaned off of the Prednisine, however everyone is different and that we’d hope for sooner….like 6 months or a year.
My experience with this, PMR, is only about half a year and diagnosed only for a little over two months. My hands and feet still hurt occasionally but not like they did and I can live with it, although I do hope it goes away. Occasionally, my hips hurt but it’s minor (it could be from exercising or stretching) and I can live with that too. I have not stopped exercising, treadmill 30 minutes to one hour daily or changed my diet.
If you read all of this, bless you. I know it was long. I did it to share my experience if it could help someone else, add more variables, to chronicle my adventure for myself, and to seek advice and learn from others’ experience. Replies and comments are welcome.
I wish you the very best.

@stonewheel
I have read your journey through this disease and it just proves that trauma and stress to the body is most certainly a contributing factor to PMR. My PMR started when I cut open my heel and needed 7 stitches. I realized there was something else going on when I was feeling fatigued through my recovery. Coincidentally my mother had PMR and when I was sitting on the toilet with pain and had trouble getting up my thoughts went to my mother. I knew what I was dealing with. Hopefully getting treatment early on is going to help me beat this disease more easily than what she went through decades ago.
Happy new year to you and best wishes in your journey to healing.

@cheraloha
I’m wondering if there are more post Covid cases of PMR because of the inflammation that Covid causes. Inflammation seems to be the source of most disease.
Who knows🤷🏻‍♀️?

@stonewheel Thank you for sharing your experiences. Like you, I exercise, eat green shakes and lived a pretty healthy life until PMR came on like a bandit. No rhyme or reason to it. I have not heard about UV light - interesting. I have heard from my rheumatologist that he is seeing more cases post the Covid vaccine. It's just anecdotal, but interesting all the same.

Be careful on the reduction. I went too fast as I absolutely hate prednisone and my PMR pain came back in a flash. I was down to .5 and am now at .75 and still have pain and stiffness. It's a balance as the side effects of Prednisone are sometimes worse than the PMR pain. I start Actevera after the first of the year and am hoping that will help. I'm in month 11 of this dreadful disease and am praying it will go into remission soon.

Best of wishes to you on your journey. This group and all the combined info and experiences are a huge help.

Aloha,
Cherie

@cheraloha
I got a wicked case of PMR 5 days after the first Shingrix vaccine and my 2 Drs concur it’s most probably an immune system overreaction. I never had an auto immune disease before this and in addition, while reading in a lot of different places where people give PMR feedback, A great many of them came down with it after a vaccine. I am not an anti-vaxxer, but it makes sense that sometimes your immune system decides to have a haywire reaction. I naïvely thought it would resolve itself sooner than later, though it is much better. Prednisone is a miracle drug and it has helped me a great deal. I don’t think I’m particularly sensitive to it but it’s amazing how trying to get from one and a half mg to 1 mg seems like crossing the Rubicon. That and flumidi…sp. lol. I feel like vaccine reactions are such a controversial subject that they ( Dr’s) just don’t really go there. Very distressing to have such an unknown syndrome. At least it’s under control somewhat

Hello. New here and I appreciate all of the entries that I have read in the headings related to PMR. Thank you.
I take hypothyroid meds (2) for twenty plus years every morning.
I was diagnosed with PMR in October 2025. I’m 68 years old, male, 5’7”, 177lbs.
My history (attempting to connect the dots):
I have a smoothie every morning for breakfast (10 years) consisting of blueberries, strawberries, apple, banana, plain Greek yogurt and aloe vera juice. A year ago I began adding vegan protein powder.
I stopped (30 years) smoking three years ago.
Three years ago I also stopped eating meat except raw salmon and tuna, plus canned tuna. At that time I stopped dairy except the yogurt, cottage cheese and Parmesan cheese. I eat one whole egg every day. No beef, pork or poultry. I eat bean and soy burgers occasionally.
I was scheduled for a knee replacement in August 2025, but it was delayed because of pain in my hips. My hip pain began in April, about 4-5 months prior and I thought it was from exercise and/or stretching that I was doing in preparation for the surgery. The surgeon said that he wanted an MRI of my hips. They weren’t too terrible but he said that both hips also needed to be replaced.
I was overwhelmed and he knew it so he told me to take a week and thenschedule the surgeries.
The curious thing for me was that the actual joints in my hips did not hurt. The pain felt like it was in the tendons connecting muscles to bones near the joints. Then the same type pain began above my calf below my good knee, but not in the joint. Then, both shoulders became painful. That made me question the real cause of the pain because I have two artificial shoulders. Total and complete replacements which were necessary and are now perfect.
After a week, I told my surgeon that I wanted to wait 6 months and then reschedule.
I didn’t tell him but i began taking supplements and doing target exercises to see if I could make improve and not need the hip replacements.
I began taking Marine Collagen Peptides and my major muscle groups really felt like I was body building. BUT (BIG BUT!) my hips, upper calf and shoulders got horribly worse. A long 2-day drive road trip and return was almost unbearable while driving. When I got home, I felt like a beached whale being crushed under my own weight every morning. Sitting and rising from a toilet was nearing impossible. Dressing below my waist was a slow painful effort. The soles of my feet and the palms of my hands felt like my bones were made of razor blades and hurt, hurt, hurt. I stopped the marine collagen peptides, even though everything I had researched said it was good for joint associated pain. I read today on this website that others reported PMR after taking collagen peptides.
Six months ago I bought and began treating toenail fungus on my big toes only with ultraviolet light (15 minutes on each, twice daily.) An inexpensive device that along with an over-the-counter topical liquid worked. No more fungus. BUT, I read that PMR can be manifested by UV light.
I don’t like taking medicines but began taking ibuprofen and acetaminophen which helped a little.
(One year ago, December 2024, I received a flu shot and Shingles vaccines. I’m due for a COVID-19 vaccine booster but will discuss it with my PCP in January 2026, during my next PMR follow-up. I mention these because I read on this site that someone reported that they got PMR after Shingles vaccine.)
That’s my relavent history, I think.
I went to my PCP. I told my PCP about the UV light treatments and marine collagen peptides. He said that he was unaware that either caused PMR or made it worse, but definitely stop using both, which I had already done. He prescribed a steroid pack of Methylprednisone. 6 pills the first day, 5 on the next…, finally 1 on the sixth day.
The second day, I felt cured. I felt great! No pain anywhere. Then, by the next to the last day the pain crept back and I couldn’t wait until it was time for the evening pill that day. I took the last pill the next morning. It did little good. The next morning I was back to feeling that my hips were being crushed by my own weight again. Like before, the pain woke me before sunrise and I suffered until I could take acetaminophen. He told me not to use the ibuprofen.
I had scheduled a follow up appointment with my PCP (as a just in case) and it was the next day. I’m glad I had.
My PCP informed me that he suspected before, and now he was certain, that I had PMR.
He said he treats about 2-3 patients a year with PMR and felt a specialist wasn’t necessary, but that was an option if I desired.
He prescribed 20mg Prednisone, twice per day, with food and Omeprazole to protect my stomach. After 2 days, I felt no pain anywhere again.
One month later he suggested that I try to taper the Prednisone to 15 mg twice a day and see how I felt. The pain began to return so I began taking and still take 20 mg in the morning and 15mg at night. That’s has worked fine.
Now, one month later I plan on trying to taper to 15mg twice per day for a month.
If that is successful, I’ll try 15mg in the am and 10 mg at night.
My PCP did tell me that it might be 1-2 years before I would be fully weaned off of the Prednisine, however everyone is different and that we’d hope for sooner….like 6 months or a year.
My experience with this, PMR, is only about half a year and diagnosed only for a little over two months. My hands and feet still hurt occasionally but not like they did and I can live with it, although I do hope it goes away. Occasionally, my hips hurt but it’s minor (it could be from exercising or stretching) and I can live with that too. I have not stopped exercising, treadmill 30 minutes to one hour daily or changed my diet.
If you read all of this, bless you. I know it was long. I did it to share my experience if it could help someone else, add more variables, to chronicle my adventure for myself, and to seek advice and learn from others’ experience. Replies and comments are welcome.
I wish you the very best.

@stonewheel
I recognize all of your pain, even in my hips although I have two total hip replacements( ?) same as your shoulders.
The orthopedic surgeon told me it was an inflammation of the bursitis (occurs frequently after a hip replacement)
That was before I got diagnosed with PMR and that explained the cause of the pain in the tendons. PET scan showed inflammation in my whole body.
You started at a high dose of prednisone, my reumy prescribed me only 15mg daily for one month and it took about 2 weeks before the pain went almost completely away. Now I only have sore fingers in the morning. I’ll soon be tapering to 12mg and I hope the pain won’t come back..?
My knees hurt a little bit when bending but nothing compared to the extreme pain I was suffering before taking Prednisone.
I felt like I had fallen off a cliff every morning not knowing if I could get out of bed without any help.
I often took a hot shower during the night because the pain was unbearable when laying down.
Good luck!

@ndep Thank you for your reply. Not knowing anything about PMR until 4 weeks ago, I took the dosage that my doctor prescribed.
As I write this, I am in the ER with a severe blood clot in my right leg that extends from my groin to my ankle. They put me on blood thinner (Heparin) and are considering a surgery (Thrombectomy.) I’m waiting on the vascular surgeon to walk in any moment.
Prednisone, I learned (too late) can trigger blood clotting in some people.
Perfect storm.
I’m trying to keep a positive mental attitude and keep smiling.
(Pause… the vascular surgeon just came and went. He wants to avoid the surgery and treat me with blood thinners. Maybe go home today?)
I wish the best for you and everyone else on this site who have been so kind and helpful to me and each other.
Good bye for now.

@ndep Thank you for your reply. Not knowing anything about PMR until 4 weeks ago, I took the dosage that my doctor prescribed.
As I write this, I am in the ER with a severe blood clot in my right leg that extends from my groin to my ankle. They put me on blood thinner (Heparin) and are considering a surgery (Thrombectomy.) I’m waiting on the vascular surgeon to walk in any moment.
Prednisone, I learned (too late) can trigger blood clotting in some people.
Perfect storm.
I’m trying to keep a positive mental attitude and keep smiling.
(Pause… the vascular surgeon just came and went. He wants to avoid the surgery and treat me with blood thinners. Maybe go home today?)
I wish the best for you and everyone else on this site who have been so kind and helpful to me and each other.
Good bye for now.

@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/
----------------------------
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."