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

Welcome to the Polymyalgia Rheumatica (PMR) group on Mayo Clinic Connect.

Meet other members who are dealing with PMR. Let’s learn from each other and share stories about living well with PMR, coping with the challenges and offering tips.We look forward to welcoming you and introducing you to other members. Feel free to browse the topics or start a new one.

Grab a cup of coffee or beverage of choice and let’s chat. Why not start by introducing yourself? What's your experience with PMR? How are you doing today?

Interested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) Support Group.

@mimik211

My doc ordered the antibody test to confirm that my 2yr stint on varying dosages of pred (I’m still on 10-10.5 mg, but tapering) did not interfere with developing COVID antibodies after having rec’d 2 vac shots. I was concerned with how to protect myself if I hadn’t developed any antibodies.
Hope you’re doing well...Take care.

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I too am curious about the antibody testing. My doc said there isn’t a good test, or more specifically they don’t know enough about the test results to evaluate the results as related to covid. She is with UCSF medical center. The cdc doesn’t have info as far as I know either. Can you share the antibody tests you received? Glad you found you mounted a defense.

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@karinaph

I too am curious about the antibody testing. My doc said there isn’t a good test, or more specifically they don’t know enough about the test results to evaluate the results as related to covid. She is with UCSF medical center. The cdc doesn’t have info as far as I know either. Can you share the antibody tests you received? Glad you found you mounted a defense.

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The test was: SARS-COV-2 ANTIBODY, IGG. As I understand it the test merely confirms whether COVID antibodies are present (positive), or not (negative). It doesn’t quantify how many antibodies are present nor the strength of any antibodies detected. Hope this is helpful.

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Hi my name is Kim. I have recently, about 6 months been diagnosed with PMR. My c reactive protein was 89. I started out on 15 mg of prednisone and take 200 mg twice a day of hydroxclorquin. I am now taking 8 mg of prednisone but still have arm, chest and neck pain, especially in the morning. I hate to go up again with the prednisone. Is there anything else that I could try to get off the steroids? I know long term they are not good for you. I am 66 years old. Thank you, that it is go great to connect with others.

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@drlovegrove

What happens if you stop taking Methotrexate abruptly?

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Drlovegrove, it appears your question got lost in the fray of the discussion. You asked "What happens if you stop taking Methotrexate abruptly?"

According to this Q&A, "There is no problem with stopping methotrexate abruptly, with the exception that you might flare if you indeed have active ongoing RA. Talk to your rheumatologist."
https://www.hopkinsarthritis.org/ask-the-expert/stopping-methotrexate/

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@colleenyoung

Drlovegrove, it appears your question got lost in the fray of the discussion. You asked "What happens if you stop taking Methotrexate abruptly?"

According to this Q&A, "There is no problem with stopping methotrexate abruptly, with the exception that you might flare if you indeed have active ongoing RA. Talk to your rheumatologist."
https://www.hopkinsarthritis.org/ask-the-expert/stopping-methotrexate/

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I don't have RA I have PMR my rheumatologist ordered blood work today which I had done and she recommended I discontinue the Methotrexate for now. I see her soon for a follow up. Thank you all so much for being there to say you are a lifeline is an understatement.

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I developed PMR in Sept of 2018 3 months after getting shingles and was put on methylprednisolone 8mg, soon tapered to 4 mg with ibuprofen (2 tablets at night). Within 9 months had weaned off methlyprednisolone and was just on ibuprofen to manage pain. In Sept. of 2020 I got a shingles shot (Shingrix) which has thrown my PMR through the ceiling. I went back on the methylprednisolone and within 8 months had to stop it due to side effects (leg and foot cramping, SOB, blurry vision, itchy skin, and anxiety) I now take 2 tablets of ibuprofen every night. I am now getting pain and numbness in arms at night which is prohibiting me for being able to sleep. I have put on weight because I am now tired all the time (food gives energy but being overweight makes me lose energy - vicious circle) Any ideas....I will not get the COVID vaccine as it is similar to Shingrix (or so my allergy Doctor and pharmacist say) and I will not go through another pain cycle before this on is over. Any ideas as to naturally try to control this pain in my arms and now itching skin? Thank you for your time.

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Does the diagnosis of PMR lead to decreased lifespan?

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@mimik211

The test was: SARS-COV-2 ANTIBODY, IGG. As I understand it the test merely confirms whether COVID antibodies are present (positive), or not (negative). It doesn’t quantify how many antibodies are present nor the strength of any antibodies detected. Hope this is helpful.

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Thank you. My husband who is a medical researcher has been looking for data on this subject and thus far his findings are that immunocompromised folks ( like me) should act as though we could be exposed and vulnerable when in public where we don’t know who has been vaccinated. Ugh! I’ve been hiking without a mask but when I go into stores I’m putting it back on.

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My initial occurrence of PMR was Sept. 2019 and it lingered in various intensities through mid-July 2020. It remained undiagnosed that entire time. In mid-July on my 70th BD I was sent to ER (Happy Birthday) and was diagnosed with Pericarditis. Stayed at Mayo for 3 days. But on day one the Doctors prescribed for me Colchicine & 40 mg Prednisone. Well that immediately addressed the pain from the Pericarditis as well as completely & simultaneously eliminated all body and muscle stiffness from PMR!

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@kimmgb

Hi my name is Kim. I have recently, about 6 months been diagnosed with PMR. My c reactive protein was 89. I started out on 15 mg of prednisone and take 200 mg twice a day of hydroxclorquin. I am now taking 8 mg of prednisone but still have arm, chest and neck pain, especially in the morning. I hate to go up again with the prednisone. Is there anything else that I could try to get off the steroids? I know long term they are not good for you. I am 66 years old. Thank you, that it is go great to connect with others.

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My doctor prescribed Colchicine and knocked out all PMR.

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