Hello @ltta, welcome to Connect. I'm sorry to hear your PMR is back. My second occurrence finally went into remission last February when I was able to taper off of prednisone. Have you done any work on your diet or nutrition to help reduce the inflammation associated with PMR? After my first bout with PMR I developed small fiber peripheral neuropathy and started looking at cellular nutrition as something to help improve my overall health. I started working on it after reading a book by Dr. Terry Wahls - The Wahls Protocol. She has an interesting story to tell on how she used nutritional changes to eliminate the symptoms of her MS. More about her here: https://terrywahls.com/about/about-terry-wahls/

There certainly is a lot of debate about to get a flu shot or not. This year I am participating in a flu shot clinical study for elderly folks so I'm hoping they get some useful information from the study. I can understand not getting one if you've had a bad experience but I'm pretty sure my PMR was not caused by a flu shot. Here is an article that might help give you more background information about the benefits and risks of getting the flu shot if you immune system is compromised and to help you ask the right questions of your doctors to get clear answers.

If Your Immune System Is Compromised, Can You Get Vaccinated?
-- https://health.clevelandclinic.org/if-your-immune-system-is-compromised-can-you-get-vaccinated/

@ltta thanks for the shout out. We all need to do that now and then! I'm hoping your PMR goes into hiding quickly.

John

I find your post interesting. I am 63 and have been having symptoms that seem to mirror others who have been diagnosed with pmr. I currently have no diagnosis. I have had blood tests with elevated CRP and ESR. I do not have RA according to blood test results. I had a series of X-rays that indicate some degeneration in neck and shoulder areas. My symptoms appeared shortly after getting the flu shot. I have been trying to research what I do next to figure this thing out. I am currently on my 3rd round of prednisone for 20 days starting with 40 mg and decreasing by 10 mg every 5 days. My provider has not scheduled any follow up blood work or appointment and seems to be satisfied with a diagnosis of musculoskeletal pain. I don’t think he quite understands the pain and symptoms.
I have trouble getting more than 2 to 3 hours of sleep at a time. I get out of bed around 4 or 5. It is difficult to get out of bed and walk down the steps. My mobility improves as the morning goes on and around 10:00, I’m usually feeling better. I usually cannot move my arms much with limited ROM especially left side. Even when the major pain and stiffness decreases, I still hurt even at rest. Pain is mainly shoulders and hip/buttock area, heel pain, numbness in both arms and sometimes feet, feeling of being warm like a hot flash.
Seeing a rheumatologist in my area has at least a 6 to 8 month waiting time. I have an appointment with a new provider in 3 weeks so any advice on questions I should ask or additional tests would be appreciated. Thanks in advance.

I was fascinated with your post. I am 73 and was diagnosed with PMR in 1999. I was put on Prednisone and, after a period of tapering, ended up with a daily dosage of 20 mgs. I remember vividly my Doctor saying that I would be on Prednisone the rest of my life. He also said that if I ever had a blinding headache, take as many Prednisone pills that I could hold in my hand and go straight to Emergency. This was alarming but also encouraging because it implied to me that Prednisone must be a relatively safe drug. From 1999 until 2017 I had been feeling fine, actually better than fine. In October 2017, my current doctor asked if I wanted a Flu Shot. I routinely have had Flu Shots and I said Sure! Within 3 days my left shoulder hurt. The kind of hurt where one can not get comfortable in bed. Three days later, that pain was gone and was replaced by a similar pain in my left hip. Three days later, that pain was gone and there was something wrong with my feet and calves. Both feet were slightly puffy and felt numb-ish. Both calves were very painful. And that is the same today... over a year later. My Doctor had ordered many blood tests, a chest Xray and an EKG. Everything appeared normal. He arranged appointments with a Physical Therapist/Pain Management Doctor and an Endocrinologist. The PT Doctor said that I was, in fact, very healthy. She also said that she didn't know what happened to my feet but that they would never get worse and that I would never need a cane or wheelchair. The Endocrinologist said that I likely had "Reactive Arthritis" and that, for my size, I was taking too much Prednisone for too long. He started a tapering program (roughly last summer) and in early Feb. 2019, I was completely off Prednisone. Since my legs continued to hurt and the pain had spread somewhat to my thighs, I could not identify any withdrawal symptoms. However now, 3 weeks after being off Prednisone, I feel those dreaded PMR symptoms coming back with a vengeance. I will be seeing my regular Doctor soon. What I appreciated about your post was the connection to the Flu Shot. I was convinced that my pain was triggered by the Flu Shot but almost everybody I mentioned it to scoffed at the notion. I feel vindicated, Itta! (Though still in pain!) I don't know what happened to my feet. I don't know what happened to my calves but I suspect poor circulation since I have noticed pitting edema around the ankles. I will be asking my Doctor if I should have an ultrasound of my legs and, of course, will return to some level of Prednisone help.

Anyway, I want to thank you for your post. This Forum has been a huge comfort for me.