1. < Polymyalgia Rheumatica (PMR)

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

Posted by Ethan McConkey, Moderator @ethanmcconkey, Dec 18, 2019

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.

dermnurse68 | @dermnurse68 | Nov 18, 2021
In reply to @kfassler "Hi, I am glad to find this platform for PMR patients to share their stories. I..." + (show)
@kfassler

Hi, I am glad to find this platform for PMR patients to share their stories. I am a 65 year old active and healthy woman and have had PMR for 2 years now. I managed to get off of prednisone (finally) on Oct. 1, 2021. However, my pain has now returned over the last couple of weeks and I plan to see my doctor tomorrow. I don't want to go back on prednisone, but I sense that it is the only thing that will reduce the pain. I am wondering if anyone has tried Relief Factor and what your experience has been. I have been taking it for about 10 days now at the recommended initial dose and there has been no improvement in my pain level so far. I spoke with a Relief Factor consultant and they have no client testimonials from PMR patients using Relief Factor as of this posting. I am also concerned that my flu shot on Oct. 8th may be what has triggered this relapse. I also had a similar relapse in the spring of this year after my second Moderna jab; and I'm not feeling good about getting a CV-19 booster at this point. I welcome any feedback, comments, suggestions from anyone with similar issues and concerns.

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Hi
I have had PMR for 5 years, I was finally weaned off prednisone after 4 years, it really never helped me with pain, I am in constant pain daily, I have wanted to try relief factor for a while now, but noticed that it was for minor aches and pain, I wanted something more natural, but I think you answered my question, nothing seems to take the discomfort away,the doctors say that I have fibromyalgia as well and have been given cymbals for my pain but still have pain!
What is your CRP now that you are feeling pain?
If I find something I will let you know.

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1 reply
dermnurse68 | @dermnurse68 | Nov 18, 2021
In reply to @colleenyoung "Martie, Kevzara is usually prescribed for rheumatoid arthritis. Is you doctor suggesting this medication for PMR?" + (show)
@colleenyoung

Martie, Kevzara is usually prescribed for rheumatoid arthritis. Is you doctor suggesting this medication for PMR?

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Hi
I don’t have RA, but my doctor prescribed leflunomide which I believe is in the same family as Kevzara, so far it has brought my CRP down

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dermnurse68 | @dermnurse68 | Nov 18, 2021
In reply to @johnbishop "Hello @kfassler, Welcome to Connect. I'm really sorry to hear your PMR came back. I don't..." + (show)
@johnbishop

Hello @kfassler, Welcome to Connect. I'm really sorry to hear your PMR came back. I don't blame you for not wanting to go back on prednisone. None of us like being on prednisone but it is the gold standard when it comes to treating PMR. I have no experience with Relief Factor but unless they have done clinical trials with PMR it would be a no go with me. If you've been taking it for 10 days and there has been no improvement in your pain level that would be a big red flag for me that it's not going to help.

I have had 2 occurrences of PMR. The first lasted 3-1/2 years, the second lasted 1-1/2 years. Both times I started with 20mg prednisone and the pain was gone within a few hours of taking the dose. From your description it sounds like you have only been off of prednisone for about a month which is not long. I think it's really good that you are seeing your doctor or rheumatologist tomorrow to discuss treatment.

What I think helped me the second time around to reduce the time it took me to get off of prednisone was I made some lifestyle changes - If that's something you haven't already considered or are doing, you might want to give it a try. -- Diet and Lifestyle Changes That Can Aid in the Treatment of Polymyalgia Rheumatica: https://arthritissj.com/diet-and-lifestyle-changes-that-can-aid-in-the-treatment-of-polymyalgia-rheumatica/

Can you let me know what you find out at your appointment tomorrow?

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Thank you John for this website and your continued knowledge about sources for this ugly disease!

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kfassler | @kfassler | Nov 18, 2021
In reply to @johnbishop "Hello @kfassler, Welcome to Connect. I'm really sorry to hear your PMR came back. I don't..." + (show)
@johnbishop

Hello @kfassler, Welcome to Connect. I'm really sorry to hear your PMR came back. I don't blame you for not wanting to go back on prednisone. None of us like being on prednisone but it is the gold standard when it comes to treating PMR. I have no experience with Relief Factor but unless they have done clinical trials with PMR it would be a no go with me. If you've been taking it for 10 days and there has been no improvement in your pain level that would be a big red flag for me that it's not going to help.

I have had 2 occurrences of PMR. The first lasted 3-1/2 years, the second lasted 1-1/2 years. Both times I started with 20mg prednisone and the pain was gone within a few hours of taking the dose. From your description it sounds like you have only been off of prednisone for about a month which is not long. I think it's really good that you are seeing your doctor or rheumatologist tomorrow to discuss treatment.

What I think helped me the second time around to reduce the time it took me to get off of prednisone was I made some lifestyle changes - If that's something you haven't already considered or are doing, you might want to give it a try. -- Diet and Lifestyle Changes That Can Aid in the Treatment of Polymyalgia Rheumatica: https://arthritissj.com/diet-and-lifestyle-changes-that-can-aid-in-the-treatment-of-polymyalgia-rheumatica/

Can you let me know what you find out at your appointment tomorrow?

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Hi John, thank you for the warm welcome and for sharing your personal journey with PMR. I did see my rheumatologist this morning and he advised me to go back on prednisone at 5mg a day and then taper down by 1mg every 2 months. I've already started the 5mg and it is working, as I knew it would. I had hoped for a more natural pain remedy but, as you say, prednisone does work best for PMR pain. I may continue with a lower dose of Relief Factor as well which is okay with my doctor since the Omega 3 and Turmeric are good supplements to add to my routine.
I already follow all of the diet and lifestyle recommendations in the article that you sent because I believe that is the best thing we can do for our bodies.
I hope that I will be able to achieve "remission" in about 10 months with the currently recommended tapering plan from my rheumatologist. Only time will tell.
I wish you all the best.
Kathy

REPLY
kfassler | @kfassler | Nov 18, 2021
In reply to @dermnurse68 "Hi I have had PMR for 5 years, I was finally weaned off prednisone after 4..." + (show)
@dermnurse68

Hi
I have had PMR for 5 years, I was finally weaned off prednisone after 4 years, it really never helped me with pain, I am in constant pain daily, I have wanted to try relief factor for a while now, but noticed that it was for minor aches and pain, I wanted something more natural, but I think you answered my question, nothing seems to take the discomfort away,the doctors say that I have fibromyalgia as well and have been given cymbals for my pain but still have pain!
What is your CRP now that you are feeling pain?
If I find something I will let you know.

Jump to this post

Hi dermnurse68, sorry to hear that you are struggling with both PMR and fibromyalgia. I can't imagine what that is like. My CRP level was 0.3 mg/dL last time it was tested in the spring of this year. My doctor did not see a need to redo the test today when I saw him. I wish you all the best and if you find a more natural pain reliever, please let me know. Kathy

REPLY
martiesowers | @martiesowers | Nov 21, 2021
In reply to @colleenyoung "Martie, Kevzara is usually prescribed for rheumatoid arthritis. Is you doctor suggesting this medication for PMR?" + (show)
@colleenyoung

Martie, Kevzara is usually prescribed for rheumatoid arthritis. Is you doctor suggesting this medication for PMR?

Jump to this post

Yes. And a consulting rheumatologist concurred

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mollytracey198 | @mollytracey198 | Nov 22, 2021

I am Molly. 7 years ago I went with my family to Costa Rica. I am generally attractive to mosquitos, black flies, gnats & unnamed tropical insects to the point of appearing to wear black hosiery. 7 days after returning home, I could not walk, lift my arms, watched all my joints swell before my eyes. I went immediately to my family dr who prescribed 20mg of prednisone. Miracle drug. Dangerous long term. Because some symptoms didn’t match the illness, I ended up seeing 80+ drs, including hypnotists, eastern, western physical therapists, with acupuncture, nutritionists, etc. - currently weight loss & atrophy in extremities, headaches, severe bruising contraction of stage 4 hemorrhoids,along with genital warts. Ugh!
Depression, hopelessness, constant pain is all consuming. My spine at L3,L4 & S 5 are most affected with flaming pelvis and sciatica down both legs. Secondary, is cervical, & left & right neck pain which has no warning. Along with all of the above I contracted intestinal parasites.
Get back with me to share. Molly Tracey

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1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Nov 24, 2021
In reply to @mollytracey198 "I am Molly. 7 years ago I went with my family to Costa Rica. I am..." + (show)
@mollytracey198

I am Molly. 7 years ago I went with my family to Costa Rica. I am generally attractive to mosquitos, black flies, gnats & unnamed tropical insects to the point of appearing to wear black hosiery. 7 days after returning home, I could not walk, lift my arms, watched all my joints swell before my eyes. I went immediately to my family dr who prescribed 20mg of prednisone. Miracle drug. Dangerous long term. Because some symptoms didn’t match the illness, I ended up seeing 80+ drs, including hypnotists, eastern, western physical therapists, with acupuncture, nutritionists, etc. - currently weight loss & atrophy in extremities, headaches, severe bruising contraction of stage 4 hemorrhoids,along with genital warts. Ugh!
Depression, hopelessness, constant pain is all consuming. My spine at L3,L4 & S 5 are most affected with flaming pelvis and sciatica down both legs. Secondary, is cervical, & left & right neck pain which has no warning. Along with all of the above I contracted intestinal parasites.
Get back with me to share. Molly Tracey

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Hello Molly @mollytracey198, Welcome to Connect. I can't begin to imagine what you have been going through. Did the 20mg prednisone provide any relief once you started taking it? It does seem like you could have picked something up in Costa Rica. Did any of the doctors mention any of the common diseases in Costa Rica?

6 OF THE MOST COMMON DISEASES IN COSTA RICA: https://borgenproject.org/common-diseases-in-costa-rica/

You have mentioned so many symptoms that like you say don't really fit with PMR. If you have seen 80+ doctors and no one seems to have a clue, have you thought about going to a major teaching hospital or health facility like Mayo Clinic that have a multidisciplinary teamwork approach to healthcare that is patient centered? I'm sorry that I have more questions than answers but it seems like you might need to see a group of specialists that work together to provide a diagnosis and come up with a treatment plan.

If you would like to seek help from Mayo Clinic, contact one of the appointment offices. The contact information for Minnesota, Arizona and Florida can be found here http://mayocl.in/1mtmR63.

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1 reply
lmz | @lmz | Dec 3, 2021

I came down with this disease about 10 weeks ago, and by about week 6 it was severe enough that I was able to diagnose it (my father and a friend both had it, so I knew the symptoms). In my area it takes about five months to get an appointment with a doctor, and I don't think I want to take Prednisone anyway, so I will probably tough it out. I'd like to know the normal progression of the disease in people who don't take Prednisone. Do the symptoms gradually get less intense? Do they go away after a year or so? Does ibuprofen help?

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2 replies
scpartain | @scpartain | Dec 4, 2021
In reply to @lmz "I came down with this disease about 10 weeks ago, and by about week 6 it..." + (show)
@lmz

I came down with this disease about 10 weeks ago, and by about week 6 it was severe enough that I was able to diagnose it (my father and a friend both had it, so I knew the symptoms). In my area it takes about five months to get an appointment with a doctor, and I don't think I want to take Prednisone anyway, so I will probably tough it out. I'd like to know the normal progression of the disease in people who don't take Prednisone. Do the symptoms gradually get less intense? Do they go away after a year or so? Does ibuprofen help?

Jump to this post

HI, I'm sorry that you are having PMR pain and are unable to see a doctor for such a long time. I have had two bouts of PMR. The first bout occurred thirteen years ago in 2008 and lasted for six to eight months, during which I took prednisone intermittently. My second experience with PMR began in January 2021 immediately after I received the Covid vaccination. I began treatment under the guidance of a rheumatologist and took low dose prednisone, which relieved the symptoms and reduced inflammation. I did not experience any adverse effects from the prednisone and was able to taper off over a period of three months. The entire episode lasted around six to eight months and I am now in remission. In my case, neither ibuprofen or tylenol had any effect on the painful symptoms. Prednisone was the only remedy that afforded relief. I hope you are able to find a way to manage your symptoms soon.

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