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.

@johnbishop

@jallenaz, I've been doing the intermittent fasting since late March and have lost around 25 lbs so far. It does work well and I stopped feeling hungry after the first 2 or 3 days which kind of surprised me. Have you used the Zero app for your phone? It's a great free tool for tracking the different types of fasts 20/4, 18/6, 16/8, etc -- https://www.zerofasting.com/

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No, I haven't tried the app. I don't think I need to lose any more weight. My wife thinks I look emaciated already. Now I just sort of use it to maintain my weight by skipping breakfast but then have something around 9 or 10 o'clock for a snack and green tea. My BMI is where it should be. The hard part now is that I want to take my prednisone in the morning but don't eat until 9 or 10. On weekends that's not convenient because I might go all morning without eating. I'm not sure how it's going to work out yet. I might just have to eat something earlier. It seems to be a balancing act.

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@jallenaz

No, I haven't tried the app. I don't think I need to lose any more weight. My wife thinks I look emaciated already. Now I just sort of use it to maintain my weight by skipping breakfast but then have something around 9 or 10 o'clock for a snack and green tea. My BMI is where it should be. The hard part now is that I want to take my prednisone in the morning but don't eat until 9 or 10. On weekends that's not convenient because I might go all morning without eating. I'm not sure how it's going to work out yet. I might just have to eat something earlier. It seems to be a balancing act.

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@jallenaz I know I was probably told to take the prednisone with a meal or when eating something but I really never did that. I'm wondering if others in the discussion always took the prednisone with a meal. I've only been told to take this medicine with food or milk to avoid stomach irritation and my stomach was never irritated when I took it without food. I would sometimes have a small glass of skim milk to take it along with blood pressure medications.

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@jallenaz

No, I haven't tried the app. I don't think I need to lose any more weight. My wife thinks I look emaciated already. Now I just sort of use it to maintain my weight by skipping breakfast but then have something around 9 or 10 o'clock for a snack and green tea. My BMI is where it should be. The hard part now is that I want to take my prednisone in the morning but don't eat until 9 or 10. On weekends that's not convenient because I might go all morning without eating. I'm not sure how it's going to work out yet. I might just have to eat something earlier. It seems to be a balancing act.

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Hi, I’m 73, on my 3rd bout of PMR, though in retrospect, think my last 2 bouts are the same bout and I got off prednisone too quickly. This bout was diagnosed in December, but I knew it was there in November, just couldn’t get an appointment. My first bout was 15 years ago, so I had a long remission. I currently take 6-7 mg of prednisone a day, 1-2 mg at noon and 5 mg at 9 at night. You might check with your physician about taking the prednisone at a time you eat. I need to take the prednisone in the evening to prevent symptoms at night. I always take it with 6 crackers (wheat thins or other small cracker) and about an ounce of cheese. I have done a lot of my own research and haven’t found a way to prevent recurrence. I always exercise, eat well. I am a retired RDN, diabetes educator and work to keep my weight stabile. There were plenty of stressors in my life during the time PMR was in remission. All of a sudden, it was back, with no specific stressor. There are many things about PMR we don’t understand. I have decided to just focus on continuing to live as healthy lifestyle as I can and be glad that prednisone relieves the symptoms for me. I am going really slow on decreasing prednisone this time. On my first bout, I took prednisone for 2 years, was in remission for 12. On my second bout, I got off prednisone in 10 months, but it was back in 10 months, which seems to indicate to me that it was never really in remission. Best wishes to you with this frustrating condition

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@johnbishop

@jallenaz I know I was probably told to take the prednisone with a meal or when eating something but I really never did that. I'm wondering if others in the discussion always took the prednisone with a meal. I've only been told to take this medicine with food or milk to avoid stomach irritation and my stomach was never irritated when I took it without food. I would sometimes have a small glass of skim milk to take it along with blood pressure medications.

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I dont believe I took prednisone with food. I took it once a day for 20 months many of those below 5

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@johnbishop

@jallenaz I know I was probably told to take the prednisone with a meal or when eating something but I really never did that. I'm wondering if others in the discussion always took the prednisone with a meal. I've only been told to take this medicine with food or milk to avoid stomach irritation and my stomach was never irritated when I took it without food. I would sometimes have a small glass of skim milk to take it along with blood pressure medications.

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I never took mine with food either but I would encourage people to do that because that was recommended. I did drink plenty of water when I took prednisone. I think PMR is now in remission for me after 12 long years --- at least I have been off prednisone for the past 4 months.

I have some theories about PMR that seems to make sense to me. I don't know what triggered PMR but for me everything points to an adrenal/cortisol problem. I have read about cortisol and how the HPA axis is supposed to work. For me, that seems to be the mechanism that is faulty. Cortisol is called the "stress hormone" and the HPA is supposed to regulate inflammation. To me, it makes sense to take prednisone. However, taking prednisone disrupts how the HPA axis is supposed to work --- there are many circadian rhythms that are disrupted based on how prednisone is dosed. There is no oral dosing pattern that duplicates how the HPA axis functions.

I personally, took prednisone between 3 and 4 am because that was when I woke up with pain and stiffness. If I didn't take it by 4 am, there was no way I would be ready to go to work by 7 am.

I have heard about fasting for other autoimmune diseases in order to stop the pain. Presently, I am interested in eating healthy and any eating pattern that helps me to lose weight.

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@alanbruce

I dont believe I took prednisone with food. I took it once a day for 20 months many of those below 5

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Maybe I will try taking it in the morning without food for a while and see what happens.

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When I started prednisone on my first bout with PMR it seemed to take all the pain away in about 3 to 4 hours. Never had pain after that. This time and from what I am reading here that is not what usually happens. For me, the pain has slowly become less each day in the morning but the pills start to work as the day goes on. Then after 20 hours or so the pain started to come back. Now after a couple of weeks, the pain doesn't come back.

When my GP had lab work done on me he did the rheumatoid factor which was 47.3 with a reference range of 0 to 13.9. I thought that was bad but when I finished my first bout with PMR my Rheumatoid factor was over 60. From what I can google it doesn't seem like anyone knows what that factor means. My Sed rate and CRP are in the mid normal range but when we were through with the prednisone the first bout the numbers were much lower. I guess that's what we are aiming for again. Or whenever it stops hurting. Does anyone know anything about those numbers and what they might mean?

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@johnbishop

@jallenaz I know I was probably told to take the prednisone with a meal or when eating something but I really never did that. I'm wondering if others in the discussion always took the prednisone with a meal. I've only been told to take this medicine with food or milk to avoid stomach irritation and my stomach was never irritated when I took it without food. I would sometimes have a small glass of skim milk to take it along with blood pressure medications.

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I have taken prednisone and blood pressure medications basically when I get round to doing it, sometime in the morning. Like you have never had stomach irritation. However there is one drug for blood pressure that says don't eat grapefruit. Well I once worked in a place that had a grapefruit tree and I couldn't resist ... silly yes .... felt quite sick for the rest of the day.

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@jallenaz

When I started prednisone on my first bout with PMR it seemed to take all the pain away in about 3 to 4 hours. Never had pain after that. This time and from what I am reading here that is not what usually happens. For me, the pain has slowly become less each day in the morning but the pills start to work as the day goes on. Then after 20 hours or so the pain started to come back. Now after a couple of weeks, the pain doesn't come back.

When my GP had lab work done on me he did the rheumatoid factor which was 47.3 with a reference range of 0 to 13.9. I thought that was bad but when I finished my first bout with PMR my Rheumatoid factor was over 60. From what I can google it doesn't seem like anyone knows what that factor means. My Sed rate and CRP are in the mid normal range but when we were through with the prednisone the first bout the numbers were much lower. I guess that's what we are aiming for again. Or whenever it stops hurting. Does anyone know anything about those numbers and what they might mean?

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@jallenaz Here's an article that provides more information on the Rheumatoid Factor.

Rheumatoid factor: What to know - https://www.medicalnewstoday.com/articles/325505

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@johnbishop

@jallenaz Here's an article that provides more information on the Rheumatoid Factor.

Rheumatoid factor: What to know - https://www.medicalnewstoday.com/articles/325505

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@johnbishop Thank you for the link. Interesting. I wonder when I will find out my what my underlying condition that has pushed my rf so high is.

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