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.

And round face at higher doses. . . remaining hair turns kinky.

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@kmeikle1

Prednisone can cause hair loss.

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Guess I at least won't have to worry about that. I'm as good as bald now 😉😂😂

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@legendts

Guess I at least won't have to worry about that. I'm as good as bald now 😉😂😂

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I just watched NCIS last night that my husband taped for me. It was about these dogs that were loosing their hair because they were on steroids! Coincidence that it was on this week's episode!

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@barbq

Yes, still some fatigue too but better mobility. I reckon it will take time for everything to go away but at least I’ve left ground zero. Hopefully the long term dosage will prevent another episode. How are you doing?

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Thank you for your reply.. I am finding this board to be very useful. I'm finding out alot about PMR that I didn't know.

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@johnbishop

Hi @josiemc24, Welcome to Mayo Clinic Connect. I'm glad you were able to see a rheumatologist. Both occurrences I've had of PMR I was started at 20 mg prednisone and the pain went away within a few hours of taking the first dose. Then it was a tapering process to get off. The first occurrence took me 3-1/2 years to taper off, the second time 1-1/2 years to taper off. Hoping someone else may have had COVID and recovered that can share their experience with you. I've had both Pfizer COVID vaccine shots but have never tested positive for COVID thankfully. The pain symptoms can come back if you try to taper off of prednisone too fast. I've never heard of PMR causing hair loss either but did find this statement in a search...

"Symptoms of polymyalgia rheumatica - Fatigue can be another characteristic symptom. People suffering from this disease have more and more difficulty getting out of bed and starting their daily activities. Other symptoms include: Hair loss that has happened because of a loss of appetite." - Polymyalgia rheumatica (pmr): what is it, symptoms, causes ...: https://www.topdoctors.co.uk/medical-dictionary/polymyalgia-rheumatica-pmr#

Giant Cell Arteritis is a related condition to PMR and one of the symptoms is facial swelling and hair loss - "headache, symptoms of polymyalgia rheumatica, low-grade fever, fever of unknown origin, loss of appetite, depression, joint pains, weight loss, hair loss, and ..."
- Giant cell arteritis presenting as facial swelling - Pub Med: https://pubmed.ncbi.nlm.nih.gov/18926062/

Did your rheumatologist mention anything about Giant Cell Arteritis (GCA) or ask about pain around your temples or scalp?

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Thanks for this additional info! Very good to know!

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@kmeikle1

Prednisone can cause hair loss.

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Agreed. Definitely an issue I am facing. Face has rounded out and yes weight gain despite 4 miles a day of walking/hiking.

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@karinaph

Agreed. Definitely an issue I am facing. Face has rounded out and yes weight gain despite 4 miles a day of walking/hiking.

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I've reconciled it to less visible facial wrinkles.....we take the good stuff when we can!

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Thank you for allowing me to join this group. I am not confirmed diagnosed yet, but my doctor suspects I have PMR. Around October of last year, I noticed that my muscles and joints felt quite stiff, especially in the morning. I chalked it up to aging....I am 53. However I thought it strange that my stiffness was worse after resting, which I now understand is called gelling. I also suffer from frequent headaches, randomly bursting blood vessels in my fingers and toes, nearly chronic diarhhea, depression and so many food senstivities. Could these be related? More than anything, It's the muscle and joint stiffness and pain that affects me. In the morning I have to go down the stairs one at a time, like a toddler. My feet seem especially stiff and sore in the mornings, like all the tiny joints in them need to loosen up. I need to assist myself getting on and off the toilet, and I feel there are so many things that I can no longer do, in such a short period of time. It is incredibly distressing because I am an active person! Last August I was tubing in the rapids with my daughter, this March I can hardly walk a more than a few short blocks because everything just hurts. The pain in my hips and back wakes me up, and I just can't get or stay comfortable in bed. It's exhausting. Had bloodwork done 2 weeks ago and an xray of my lumbar and sacral spine last week. Don't see the doc for another 10 days for results. Thoughts?

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@laurafin

Thank you for allowing me to join this group. I am not confirmed diagnosed yet, but my doctor suspects I have PMR. Around October of last year, I noticed that my muscles and joints felt quite stiff, especially in the morning. I chalked it up to aging....I am 53. However I thought it strange that my stiffness was worse after resting, which I now understand is called gelling. I also suffer from frequent headaches, randomly bursting blood vessels in my fingers and toes, nearly chronic diarhhea, depression and so many food senstivities. Could these be related? More than anything, It's the muscle and joint stiffness and pain that affects me. In the morning I have to go down the stairs one at a time, like a toddler. My feet seem especially stiff and sore in the mornings, like all the tiny joints in them need to loosen up. I need to assist myself getting on and off the toilet, and I feel there are so many things that I can no longer do, in such a short period of time. It is incredibly distressing because I am an active person! Last August I was tubing in the rapids with my daughter, this March I can hardly walk a more than a few short blocks because everything just hurts. The pain in my hips and back wakes me up, and I just can't get or stay comfortable in bed. It's exhausting. Had bloodwork done 2 weeks ago and an xray of my lumbar and sacral spine last week. Don't see the doc for another 10 days for results. Thoughts?

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Hello @laurafin, Welcome to Connect. It sounds like you have more than polymyalgia rheumatica (PMR) going on. I'm not sure anyone here can say whether or not your other symptoms are related since we are patients like yourself. I did find an article that does mentions what I think are probably your non-PMR symptoms possibly related to food allergies.

"Many IBS patients give a history of food intolerance, but data from dietary ... Beliefs about food allergy can even lead to severe dietary restrictions[37,38]. ... Correlation between perceived food intolerance and depression, anxiety, and ... is associated with the occurrence especially of digestive complaints (diarrhoea, bloating ..." -- Psychological burden of food allergy: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4146781/

Did your doctor start you on a treatment for PMR or are you waiting to see a rheumatologist?

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