1. < Polymyalgia Rheumatica (PMR)

PMR Anyone?

Posted by olegraymare @olegraymare, Jan 4, 2018

I was diagnosed with polymyalgia rheumatica about a year ago. I WAS a very active 69 year old female all of a sudden, not being able to get out of bed on her own and having severe hip flexor pain. As is customary, after waiting 3 months to see a rheumatoid arthritis doctor, she administered the C-reactive protein test and I was VERY high. So, she diagnosed me with PMR and prescribed 15 mg of prednisone. I don't like taking meds (as most of us don't), but I was in pain and had no quality of life. I'm a swimmer and could hardly dog paddle ! One year later, I have been weaning off the 15 mg down to 1 mg. My RA said that now it's a matter of determining if I have PMR or arthritis ... so, she prescribed 7.5 mg of meloxicam for a month. I will say my shoulder pain seems better, but my hip flexors are awful !! I don't want to go back on steroids - the devil drug. I would like to get to the "crux" of what is CAUSING my inflammation??? No doctors seem to address that? What would be my next step? A nutritionist? I am leary of taking supplements, as well. Thank you for any help or sharing your experience. Weird disease ... I just want my old life back - being able to move without pain, etc. Too much to ask?

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

quilterdar | @quilterdar | Sep 12, 2021
In reply to @lorraine59 "It has been a while since I posted, but still suffering after almost 5 years. Doc..." + (show)
@lorraine59

It has been a while since I posted, but still suffering after almost 5 years. Doc put me down from 1mg of prednisone to 1/2 every other day. Horrible pain, and no appetite. Any one else suffered this long?

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I'm going on 4 1/2 yrs and still at 3 mgs. when I go down at this stage I have to cut my tabs into quarters and go down to 2and 3/4 next so I dont have so much pain.

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quilterdar | @quilterdar | Sep 12, 2021
In reply to @johnbishop "Hi @lorraine59, I'm sorry to hear you are still having a rough time with your PMR..." + (show)
@johnbishop

Hi @lorraine59, I'm sorry to hear you are still having a rough time with your PMR after close to 5 years. My longest time on prednisone with PMR was around 3 and half years and it was pretty rough. The last six months I was going back and forth between 1/2 mg daily and 1 mg daily for a week to 2 weeks at a time before changing doses until I was finally able to stop taking prednisone with a minimum amount of pain/aching. My rheumatologist told me he had a patient who took over a year on 1 mg dosage until he could stop taking it.

Have you tried any other lifestyle or diet changes to help with your PMR pain? I know that really helped me the second time around with PMR six years after it went into remission and came back again. Here's some information that might be helpful if you haven't already tried it

-- 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/

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I have been off of all flour, sugar, fried foods for 3 years and little red meat and dairy, and it has made no effect on my PMR. For some maybe this is helpful. I do find that water therapy is helpful, and physical therapy that does ultrasound has been great for my arm muscles! I take vit D for sure and others as well. Get plenty of rest going to bed earlier than I would if I was not sick trying to get 8 hours, which is difficult with prednisone. This is really beginning to wear me out, I take much longer naps now.

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lorraine59 | @lorraine59 | Sep 13, 2021
In reply to @tsc "Hi @lorraine59, I sympathize with you as the pain of PMR is like no other. I..." + (show)
@tsc

Hi @lorraine59, I sympathize with you as the pain of PMR is like no other. I can't imagine suffering with it for five years. I am not an M.D, but I'll quote from Cecil and Goldman's Textbook of Medicine, "Both PMR and GCA are highly responsive to corticosteroids...This response is so characteristic that an immediate and dramatic improvement in PMR and GCA symptoms within 1-3 days after steroid institution supports the diagnosis..PMR usually responds to 15 mg of prednisone daily...Within 2-3 days of institution of steroids, most symptoms of ...PMR clear rapidly and patients describe a miraculous improvement.". Were you ever on a higher dosage of prednisone with good results? I initially went to my PCP, a family practitioner with my symptoms, after suffering for 4 months, he ordered blood tests, but did not refer me to a rheumatologist. I had slightly elevated inflammation markers at that time. Months later, symptoms of PMR went away, but I had different pains, anemia, and anorexia. A friend, an infectious disease doctor, got involved, reviewed some of my lab work, and told me to ask my PCP for more tests. He scoffed at everything, but I pushed him. He even laughed at me when I told him I probably had Giant Cell Arteritis (per my friend) and said, if I had it I'd be blind. Long story short, my inflammation markers were off the charts and I was referred to a rheumatologist, who has treated about 70 people with PMR and GCA. Later, the PCP told me he missed the diagnosis because my symptoms weren't textbook. So, after five years of suffering, it may be wise to get switch doctors and get under the care of a rheumatologist with expertise in this disorder, if you aren't already. Best wishes for less pain.

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Thank you so much, I have asked my GP to send me to someone to help me but his response was physio therapy. Time to arm myself with some research and back to GP again!

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lorraine59 | @lorraine59 | Sep 13, 2021
In reply to @quilterdar "I'm going on 4 1/2 yrs and still at 3 mgs. when I go down at..." + (show)
@quilterdar

I'm going on 4 1/2 yrs and still at 3 mgs. when I go down at this stage I have to cut my tabs into quarters and go down to 2and 3/4 next so I dont have so much pain.

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Thank you for your reply, this gives me hope! I will make an appointment with my GP, and tell him he needs to increase my dose!!

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Teri | @tsc | Sep 13, 2021
In reply to @lorraine59 "Thank you so much, I have asked my GP to send me to someone to help..." + (show)
@lorraine59

Thank you so much, I have asked my GP to send me to someone to help me but his response was physio therapy. Time to arm myself with some research and back to GP again!

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Can you insist on a referral to a rheumatologist ...or change doctors? It's really important to be under the care of a physician who understands these disorders. Good luck!.

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lorraine59 | @lorraine59 | Sep 13, 2021
In reply to @tsc "Can you insist on a referral to a rheumatologist ...or change doctors? It's really important to..." + (show)
@tsc

Can you insist on a referral to a rheumatologist ...or change doctors? It's really important to be under the care of a physician who understands these disorders. Good luck!.

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I just made an appt. with my GP for tomorrow, and I will insist! Thank you

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1 reply
Teri | @tsc | Sep 13, 2021
In reply to @lorraine59 "I just made an appt. with my GP for tomorrow, and I will insist! Thank you" + (show)
@lorraine59

I just made an appt. with my GP for tomorrow, and I will insist! Thank you

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I found it very stressful to push my doctor to order tests he didn't want to, but I insisted and was so glad I did. If untreated, Giant Cell Arteritis (the companion disease of PMR) can cause blindness or stroke. When I first had symptoms of PMR I went to Physical Therapy, but it didn't help at all because the immune system is attacking blood vessels and restricting blood flow. Good luck! Pain for five years is too much.

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jmcc | @jmcc | Sep 16, 2021
In reply to @rolandhp "Yes a very strange disease this PMR & really no-one has the answer to where it..." + (show)
@rolandhp

Yes a very strange disease this PMR & really no-one has the answer to where it comes from why some people get it & then no cure. Sure glad for prednisone because without it well yes the pain is really bad. Now no-one is an expert but I did notice the people that are very active tend to get it why well we will let the experts figure that one out. I had said that I am on 7.5 mg/day. I take 2.5 in the AM & 5 in the PM & for me it works. Yesterday I was able to play a round of golf with no problem what so ever. Next week will do some down hill skiing that is if the predicted storm arrives. Otherwise it will be the gym. Stay active

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I’m intrigued by the morning & evening split dosage. Have others found success with that strategy? I was having trouble sleeping and my rheumatologist recommended I take my 5 mg dose as early as I can in the morning. I’m sleeping better but willing to try anything to mitigate the persistent pain in my shoulders.

For background… I’m a super active 62 yr old and after reading this blog I’m a textbook case! I’ve had PMR for over a year and tried most of the tapering strategies you’ve all done. I’ve gotten as low as 3.5mg before needing to re-up my dosages and try tapering again. I’m now at 5mg with tolerable shoulder and hip pain… brutal cycle.

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Mentor
John, Volunteer Mentor | @johnbishop | Sep 16, 2021
In reply to @jmcc "I’m intrigued by the morning & evening split dosage. Have others found success with that strategy?..." + (show)
@jmcc

I’m intrigued by the morning & evening split dosage. Have others found success with that strategy? I was having trouble sleeping and my rheumatologist recommended I take my 5 mg dose as early as I can in the morning. I’m sleeping better but willing to try anything to mitigate the persistent pain in my shoulders.

For background… I’m a super active 62 yr old and after reading this blog I’m a textbook case! I’ve had PMR for over a year and tried most of the tapering strategies you’ve all done. I’ve gotten as low as 3.5mg before needing to re-up my dosages and try tapering again. I’m now at 5mg with tolerable shoulder and hip pain… brutal cycle.

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Hi @jmcc, Welcome to Connect. Reading your post brought back some memories of my first occurrence of PMR when it took me 3-1/2 years to taper off of a starting dosage of 20 mg prednisone. I never had to split my dosage but there are several members that found it helpful and hopefully can share their experience with you. I took all of my doses in the morning. When I first got up I had some minor aches and pains that normally went away shortly after taking the prednisone in the morning and I didn't notice any pains or aches until the next morning.

You mentioned being a super active 62 year old. I know when my PMR was active if I overdid any type of exercise or activities I would pay for it the next day with a higher level of pain. As a test you might want to try lessening the activity for a day or two just to see if it makes a difference.

Have you made any diet or eating related changes to help with the PMR inflammation?

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jmcc | @jmcc | Sep 16, 2021

Hey John thanks for the response. By super active I’m less the weekend warrior that I used to be athletically now just moving a lot - walking, gardening projects, house chores, playing catch with my son’s etc. you do make a great point. I think I’ll try to keep track and just see how the aches and pains might align with the previous days activity.

Regarding diet I’m a pretty healthy eater not much red meat, lots of non-inflammatory veggies. I did swap out cream in my coffee for oat milk because it just made me feel better. I rarely drink alcohol- Despite the fact I love beer!

I saw some references to the Wahl diet But after reading through some of the recipes I doubt it’s for me. I really hate to cook and eat primarily for fuel. Grilled fish or chicken with a side of steamed vegetables and salad is more my style! Any ideas?

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