Polymyalgia Rheumatica (PMR): Meet others & Share Your Story

I was diagnosed with PMR a year ago in September, in July I had the Pfizer (two injections), all seemed to go well. I didn’t have any increase in symptoms, resting the day before and the day of injections and drinking lots of water.
I went off prednisone August 15th, 2021, I have a question. If PMR is a self limiting disease, does it go into remission or away with out steroid treatment? I continue to have very stiff joints especially in the am and continues through the day, but more bearable. I walk two miles a day and have a high pain threshold, so I’ve been told. Can I expect to have this to eventually resolve without further steroid treatment? September 2020, the medication allowed me to be able with get off a chair, pick up items on the floor, etc…..thankfully.

How anyone responds to an illness or subsequent treatment is different. Using the Covid vaccines as an example, some people experience side effects and some don't. I believe it is the same with a disease like PMR. As I have shared, I experienced improving symptoms after about 4-6 months without taking medication of any kind. I elected not to take predosone because of a family history with taking that drug. Instead, I concentrated on reducing the inflammation that is a marker of PMR. I did this naturally with an anti-inflammatory diet (eliminating sugar, wheat, gluten, dairy, etc). I also lost a lot of weight and did aquatic exercise which aided my movement. After several months, I saw improvement and a lessening of my PMR symptoms. I was able to move better with more ease and less pain. I can now tie my shoes, get up from a chair, bathe my feet, raise my arms above my head—all things I could not due when PMR first started. Like I said, my response is different than maybe some others. Taking medication is a choice and I am not here to say you shouldn't. It was my personal choice to forego it because I saw improvement with the changes I was making. From what I read, PMR can go into remission and come back. Who's to say mine will or won't at some point. But I will continue my regimen to give myself the best possible chance to live a reasonably active life. As my mother, who was diagnosed with MS, used to say, "I have MS but MS doesn't have me." She lived far beyond what her doctors predicted to the age of 83 without taking any steroids. We chose a different path much like mine. Everyone has to make their own choice as to what works for them.

How anyone responds to an illness or subsequent treatment is different. Using the Covid vaccines as an example, some people experience side effects and some don't. I believe it is the same with a disease like PMR. As I have shared, I experienced improving symptoms after about 4-6 months without taking medication of any kind. I elected not to take predosone because of a family history with taking that drug. Instead, I concentrated on reducing the inflammation that is a marker of PMR. I did this naturally with an anti-inflammatory diet (eliminating sugar, wheat, gluten, dairy, etc). I also lost a lot of weight and did aquatic exercise which aided my movement. After several months, I saw improvement and a lessening of my PMR symptoms. I was able to move better with more ease and less pain. I can now tie my shoes, get up from a chair, bathe my feet, raise my arms above my head—all things I could not due when PMR first started. Like I said, my response is different than maybe some others. Taking medication is a choice and I am not here to say you shouldn't. It was my personal choice to forego it because I saw improvement with the changes I was making. From what I read, PMR can go into remission and come back. Who's to say mine will or won't at some point. But I will continue my regimen to give myself the best possible chance to live a reasonably active life. As my mother, who was diagnosed with MS, used to say, "I have MS but MS doesn't have me." She lived far beyond what her doctors predicted to the age of 83 without taking any steroids. We chose a different path much like mine. Everyone has to make their own choice as to what works for them.

How anyone responds to an illness or subsequent treatment is different. Using the Covid vaccines as an example, some people experience side effects and some don't. I believe it is the same with a disease like PMR. As I have shared, I experienced improving symptoms after about 4-6 months without taking medication of any kind. I elected not to take predosone because of a family history with taking that drug. Instead, I concentrated on reducing the inflammation that is a marker of PMR. I did this naturally with an anti-inflammatory diet (eliminating sugar, wheat, gluten, dairy, etc). I also lost a lot of weight and did aquatic exercise which aided my movement. After several months, I saw improvement and a lessening of my PMR symptoms. I was able to move better with more ease and less pain. I can now tie my shoes, get up from a chair, bathe my feet, raise my arms above my head—all things I could not due when PMR first started. Like I said, my response is different than maybe some others. Taking medication is a choice and I am not here to say you shouldn't. It was my personal choice to forego it because I saw improvement with the changes I was making. From what I read, PMR can go into remission and come back. Who's to say mine will or won't at some point. But I will continue my regimen to give myself the best possible chance to live a reasonably active life. As my mother, who was diagnosed with MS, used to say, "I have MS but MS doesn't have me." She lived far beyond what her doctors predicted to the age of 83 without taking any steroids. We chose a different path much like mine. Everyone has to make their own choice as to what works for them.

I too follow an anti inflammatory diet. I find with the less sugar in my body, the better I can cope with the pain, as it it much less. My only trouble is that sometimes I crave the sugars so much that I give in and eat or drink them, much to my detriment.
I have taken my covid shots, moderna, and both times had a lot of pain for two days, but it lessened afterwards, and I was back on track.

If you are taking any immune suppressing drug, which corticosteroids are, you are eligible to get a third dose of the vaccine. Do not call it a booster shot because because that is for a different group. Yours is a 3rd dose for the immunocompromised. Check cdc.gov under Covid vaccines or immunocompromised

Thank you for your reply. I was under the impression that the CDC recommended a 3rd shot for people who were taking greater than 20mg prednisone per day.
That would leave most of us off the list.
So we continue down a shady lane of uncertainty. I have no idea of how well my 2 Moderna shots are serving me right now.
We in Canada are still waiting for the nod on a 3rd vaccination, immunocompromised or not.
Consequently I will be staying safe with the drawbridge up for the moment with the exception of a few rounds of golf, 2 meters apart.

The good news is your impression is incorrect. The CDC guidance has not specified on a minimum or maximum for persons taking immunne suppressing drugs. The recommendation has always been to talk with your health provider to see if you are taking a prescription drug that suppresses your immune system. Prednisone is certaily in that category. More information can be found at the CDC website or call the Covid19 Vaccination Hotline. Hope this helps clear the confusion.

The good news is your impression is incorrect. The CDC guidance has not specified on a minimum or maximum for persons taking immunne suppressing drugs. The recommendation has always been to talk with your health provider to see if you are taking a prescription drug that suppresses your immune system. Prednisone is certaily in that category. More information can be found at the CDC website or call the Covid19 Vaccination Hotline. Hope this helps clear the confusion.

Hi Carolyn, I noticed that you wished to post a URL to a resource with your post. You will be able to add URLs to your posts in a few days. There is a brief period where new members can't post links. We do this to deter spammers and keep the community safe. Clearly the link you wanted to post is not spam. Please allow me to post it for you.

- COVID-19 Vaccines for Moderately to Severely Immunocompromised People https://www.cdc.gov/coronavirus/2019-ncov/vaccines/recommendations/immuno.html