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

The following link is from PatientPower relating specifically to Leukaemia but is relative to anyone who may be on immune suppressing drugs such as steroids etc.

An article worth reading to understand the issues facing those that are immune compromised even though fully vaccinated and shows the frustration and anxiety that they feel.
https://patientpower.info/for-immunocompromised-patients-the-covid-19-threat-lives-on/

It is my understanding that with an autoimmune disease our immune systems are working overtime and attacking us rather than building immunity as it normally does. For this reason I chose not to get the Covid vaccine concerned about making things worse as far as PMR symptoms. This doesn't mean I don't have some immunity without the vaccine. Unfortunately, researchers haven't studied this aspect that I know of. As a result, I continue the strict protoccols that were recommended before we had the vaccine. Mask up and keep my distance.

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

From the scant information that is available, it appears that only a very small percentage of people with an autoimmune disease such as PMR will experience a flare after receiving the Covid vaccine. As I stated in my comments, I was among those who did have a flare in response to the vaccine. Subsequently, I was treated by a rheumatologist, who advised me that individuals with these types of autoimmune diseases tend to have more severe cases and worse outcomes in the event that they do contract Covid-19. He further stated that a flare, although painful and disabling, was much less dangerous and easier to treat than Covid and therefore, it was a good idea to proceed with vaccination. After much deliberation, I decided to go ahead with the booster vaccination and I received my third shot this afternoon. Although my PMR is now in remission after a prednisone regime, there is a possibility it will flare again and I will need further treatment. However, I feel that taking a pill is an enormously better outcome than being on a ventilator, or worse. Currently, I have many friends who are very sick or have been sick with Covid after being fully vaccinated, some of them hospitalized. Getting vaccinated is a decision each person must make after seeking the best advice and information available. I have chosen to be vaccinated.

I am happy for you. Believe me there was no intended shade on your decision to get vaccinated. I was simply sharing my own personal journey and decision. I hope that you continue to thrive and do well.

Thanks for the comment. Those of us living with PMR have tough decisions to make in the time of Covid and there is not a lot of guidance available. I wish you well in your journey and hope you stay safe and healthy!

Hello @pacarolyn, I would like to add my welcome to Connect along with @scpartain and other members. I also have PMR and a few other autoimmune conditions and have had both COVID Pfizer shots but have not had the booster shot yet. Here's a good source of information for the COVID vaccine if you are looking for more information or guidance -- https://www.mayoclinic.org/coronavirus-covid-19.

Thank you for providing this link John. It is filled with helpful information.

I started following the Mayo Clinic website after my sister had a Covid19 vaccine and developed PMR. I had severe arm/shoulder/back pain for a number of years and accepted it as a result of aging, I was 70 years old. (I am now 78)

In January 2017 when I could no longer stand the pain, I spoke to my doctor and was diagnosed with PMR. I was started on 35 mg of prednisone. Within a week I could function again. In March 2017 I tapered down to 15mg but could not go any lower without pain. By August of 2018 I had developed cataracts in both eyes. By October 2018 I had tapered off Prednisone. I found that my pain varied according to the barometric pressure. To deal with the pain I started on 5 ml balanced CBD/THC oil. I have remained off Prednisone and use the balanced oil daily as well as applying the oil topically if required.

I have had my first Covid 19 (Pfizer) shot with no side-effects. I will get my second shot on Oct 7th, hopefully without side effects. I watch my diet, sugar and many products with yeast appear to increase the pain so I avoid them.

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.