Diagnosed with PMR 2 1/2 years ago. How do I manage the extreme pain?

Posted by sallyann @sallyann, May 10, 2016

I was diagnosed with PMR 2 1/2 years ago. Steroids didn’t help now I’m on Methotrexate for a month. My EMG today was negative. I take Tramodsl, Motrin, and Tylenol to deal w the extreme pain. What do I do next? I’m 54 now.

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

@maija

After tapering down to 6 mg daily of Prednisone and doing quite well (for 10 months) all of a sudden my fingers are very stiff. Toes and left foot are stiff with pain and seem to be swollen. Wrists exhibit slight swelling also though not particularly painful. Is this PMR?

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thanks — Dr has ordered a uric acid level — I have had VERY infrequent episodes of gout — this is not like what I had in the past. So difficult to sort out the varying symptoms that do come and go. As long as I am able to be OK I would prefer not increasing the Prednisone as I would have to begin decreasing again…… The stiffness in my fingers began 3 days post flu vaccine — then it was only slight stiffness and I was able to use my hands. The INCREASED stiffness in the fingers was rather sudden — now 3 months following
the vaccine. I will try the liquid tumeric — is it available in a pharmacy or health food store?

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@maija

thanks — Dr has ordered a uric acid level — I have had VERY infrequent episodes of gout — this is not like what I had in the past. So difficult to sort out the varying symptoms that do come and go. As long as I am able to be OK I would prefer not increasing the Prednisone as I would have to begin decreasing again…… The stiffness in my fingers began 3 days post flu vaccine — then it was only slight stiffness and I was able to use my hands. The INCREASED stiffness in the fingers was rather sudden — now 3 months following
the vaccine. I will try the liquid tumeric — is it available in a pharmacy or health food store?

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I usually get the liquid turmeric on amazon.com but I've seen at at Costco and other retailers. Here's the one I buy from amazon.com:
https://www.amazon.com/gp/product/B079T64N8K/

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@johnbishop

I usually get the liquid turmeric on amazon.com but I've seen at at Costco and other retailers. Here's the one I buy from amazon.com:
https://www.amazon.com/gp/product/B079T64N8K/

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Thank you for the information re: purchasing turmeric …good to know it is in liquid form: difficult to find items to add powdered turmeric to.

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@johnbishop

I was diagnosed with PMR in early 2007 and was on prednisone (20 mg daily) for 3 years until I was finally able to get off of it gradually in 2010 when my PMR went into remission. Prednisone was a magic pill but it does have some side effects – the only one that bothered me was the weight gain. I think it increases your appetite. Unfortunately my PMR reared it’s ugly head again about three weeks ago so I recently started back on prednisone. I do think diet may play an important part of autoimmune diseases after reading a book – Wahls Protocol by Dr. Terry Wahls. http://terrywahls.com/about/about-terry-wahls/. I just try to stay close to the basic part of the diet – no gluten, no dairy, no sugar or processed foods. I do fudge a little but I figure any reduction of the gluten, sugar and processed foods is better for you. I’m also dealing with small fiber peripheral neuropathy which was diagnosed in March but I’ve had more than 15+ years just never bothered to get it diagnosed because I was always told if they find you have nerve damage there’s nothing they can do about it. This has been an interesting year and the one thing I have learned is you have to be your own advocate and while there may be no one thing that helps with your symptoms you just need to keep looking at finding something that will work of you. Hoping you are able to get your PMR under control as I know how much it hurts. Good luck!

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Hi@johnbishop! Are you still on the Dr. Terry Wahls diet? Do you believe it helped to control your PMR? Thanks!

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@igolf

Hi@johnbishop! Are you still on the Dr. Terry Wahls diet? Do you believe it helped to control your PMR? Thanks!

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Hi @igolf, I don't really follow a specific diet anymore but her Wahls Protocol book was what got me to start eating healthier. I do think diet plays a major part in controlling my PMR and helping my immune system. Probably the biggest change I've made is mostly eliminating fast foods and sugar but I'm not perfect with the sugar but I'm way better than a few years ago. At the end of last month I started an intermittent fasting plan to lose some more weight. I've been between 240 and 250 going back and forth for quite a few years and set a new goal for 215 once I learned a little more about intermittent fasting. Basically eat your 3 squares one day and the next day skip breakfast and lunch but eat dinner which gives you more than 16 hours between meals. The first fasting day I did the full day but don't think it's really needed after learning more from reading. Great new source I've discovered is @LeeAase's health blog which he has links to some great information that helps you understand how the body stores and burns fat (my words 🙂 ). Here's a link to his blog if you are interested — https://social-media-university-global.org/my-health-journey/

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@johnbishop

Hi @igolf, I don't really follow a specific diet anymore but her Wahls Protocol book was what got me to start eating healthier. I do think diet plays a major part in controlling my PMR and helping my immune system. Probably the biggest change I've made is mostly eliminating fast foods and sugar but I'm not perfect with the sugar but I'm way better than a few years ago. At the end of last month I started an intermittent fasting plan to lose some more weight. I've been between 240 and 250 going back and forth for quite a few years and set a new goal for 215 once I learned a little more about intermittent fasting. Basically eat your 3 squares one day and the next day skip breakfast and lunch but eat dinner which gives you more than 16 hours between meals. The first fasting day I did the full day but don't think it's really needed after learning more from reading. Great new source I've discovered is @LeeAase's health blog which he has links to some great information that helps you understand how the body stores and burns fat (my words 🙂 ). Here's a link to his blog if you are interested — https://social-media-university-global.org/my-health-journey/

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Thanks, John! I've found that with a low-carb diet over time I have gotten to one meal a day, or sometimes two, and once in a while three. When you're fat-adapted you don't get the carb cravings. Sometimes I just get distracted and forget to eat. I know that sounds kind of crazy, but it's reality. Empty is a WAY different feeling than hungry, and I really don't get hungry much any more.

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@johnbishop

Hi @igolf, I don't really follow a specific diet anymore but her Wahls Protocol book was what got me to start eating healthier. I do think diet plays a major part in controlling my PMR and helping my immune system. Probably the biggest change I've made is mostly eliminating fast foods and sugar but I'm not perfect with the sugar but I'm way better than a few years ago. At the end of last month I started an intermittent fasting plan to lose some more weight. I've been between 240 and 250 going back and forth for quite a few years and set a new goal for 215 once I learned a little more about intermittent fasting. Basically eat your 3 squares one day and the next day skip breakfast and lunch but eat dinner which gives you more than 16 hours between meals. The first fasting day I did the full day but don't think it's really needed after learning more from reading. Great new source I've discovered is @LeeAase's health blog which he has links to some great information that helps you understand how the body stores and burns fat (my words 🙂 ). Here's a link to his blog if you are interested — https://social-media-university-global.org/my-health-journey/

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Thanks John! I just listened to a Newt Gingrich podcast where he interviewed 2 scientists studying aging. Both said that intermittent fasting has benefits in slowing the aging process — especially 16 hours between meals.

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@dreamer38

Hi John, thanks for the articles…read both. Hopefully, the 5yr-old one will have changed somewhat!! Yes, I will update you after doc appt. I find one side of body is better, but the lhs, and I’m left handed, stays quite painful and stiff until late afternoon. Am still on 20 mg prednisone and will continue until I next see the doc. Am now taking prednisone at 5:30ish a.m. so as to get relief earlier in the day!

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Hello, John…I wrote to you today, but don’t know if I did it correctly…am trying again after reading the above. This last month, and I was going down from 5mg to 0…presently at 2mg, I have been having severe pain in my hands, incl fingers, wrists, neck and L shoulder. Rheumy put me up to 20mg, starting today, but for only one week to see what happens!! Is it possible for the pain to lessen by the afternoon? Would really appreciate your advice once again. Trust the PMR is staying away from you, especially with this dreadful C-19. Many thanks, Eileen

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@dreamer38

Hello, John…I wrote to you today, but don’t know if I did it correctly…am trying again after reading the above. This last month, and I was going down from 5mg to 0…presently at 2mg, I have been having severe pain in my hands, incl fingers, wrists, neck and L shoulder. Rheumy put me up to 20mg, starting today, but for only one week to see what happens!! Is it possible for the pain to lessen by the afternoon? Would really appreciate your advice once again. Trust the PMR is staying away from you, especially with this dreadful C-19. Many thanks, Eileen

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Hello Eileen @dreamer38, fortunately my PMR is still in remission. Sorry to hear you've had some severe pain come back in your hands, wrists, neck and shoulder. Both occurrences of PMR I was put on 20mg prednisone and after I took the first dose, the pain was gone within and hour or so. I really couldn't believe how well and fast it worked for my PMR.

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@johnbishop

Hello @asklizzie, Welcome to Connect. Yes, there are a lot of us members who struggle with polymyalgia rheumatica (PMR). I have had 2 occurrences of PMR myself but it is currently in remission and has been for almost 2 years. My treatment for both occurrences was started at 20 mg prednisone. The first time it took me 3 years to taper off. The second time it took about a year and a half.

Have you been newly diagnosed with PMR?

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yes , I have a year and half ago , primarily for arm pain and hip pain in the AM , went on prednisone and it helped. I have been okay and have actually had a TKR. went well , However at this time I have severe pain in my neck , near the ear area , and tolerable pain in one upper arm , and severe pain in shoulder area , which is a burning stabbing pain , don't now if its PMR again … HELP

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@sidsell2

yes , I have a year and half ago , primarily for arm pain and hip pain in the AM , went on prednisone and it helped. I have been okay and have actually had a TKR. went well , However at this time I have severe pain in my neck , near the ear area , and tolerable pain in one upper arm , and severe pain in shoulder area , which is a burning stabbing pain , don't now if its PMR again … HELP

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Hello @sidsell2, Welcome to Connect. Another condition associated with PMR is Giant Cell Arteritis (GCA). It presents abruptly as stiffness and pain in the neck, shoulders, and hips. There is another discussion on GCA that you might find helpful.

Giant cell arteritis: https://connect.mayoclinic.org/discussion/giant-cell-arteritis-20c716/

Have you discussed the new symptoms with your doctor or rheumatologist?

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@johnbishop

Hello @ltta, welcome to Connect. I'm sorry to hear your PMR is back. My second occurrence finally went into remission last February when I was able to taper off of prednisone. Have you done any work on your diet or nutrition to help reduce the inflammation associated with PMR? After my first bout with PMR I developed small fiber peripheral neuropathy and started looking at cellular nutrition as something to help improve my overall health. I started working on it after reading a book by Dr. Terry Wahls – The Wahls Protocol. She has an interesting story to tell on how she used nutritional changes to eliminate the symptoms of her MS. More about her here: https://terrywahls.com/about/about-terry-wahls/

There certainly is a lot of debate about to get a flu shot or not. This year I am participating in a flu shot clinical study for elderly folks so I'm hoping they get some useful information from the study. I can understand not getting one if you've had a bad experience but I'm pretty sure my PMR was not caused by a flu shot. Here is an article that might help give you more background information about the benefits and risks of getting the flu shot if you immune system is compromised and to help you ask the right questions of your doctors to get clear answers.

If Your Immune System Is Compromised, Can You Get Vaccinated?
https://health.clevelandclinic.org/if-your-immune-system-is-compromised-can-you-get-vaccinated/

@ltta thanks for the shout out. We all need to do that now and then! I'm hoping your PMR goes into hiding quickly.

John

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So vaccines cause pmr?

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