PMR

PMR

PMR

Last updated: August 21st, 2022 at 08:52 am

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--My experience...

It's no surprise if you've never heard of PMR or polymyalgia rheumatica. When I started with symptoms on 29 Jul 2017, it was gang busters! Since then I continue to learn more about this mysterious disease which, according to arthritis.org, "is an inflammatory disease of muscle. The cause is uncertain but it is believed to be an autoimmune disease in which the body's own immune system attacks the connective tissues. The primary symptoms are severe stiffness and pain in the muscles of the neck, shoulder and hip areas".

With tickets in hand, complements of daughter Jen as a birthday gift, Linda and I had spent the evening at Bethel Woods Center for the Arts, a.k.a., Woodstock, NY, at a Blondie concert. To avoid the drive home after the concert, we had a room about 12 miles away at the Kenoza Lake View Manor.

Early in July I pulled a groin muscle, so from that I limped noticeably and was in pain when I walked. At about 1:30 a.m. the night after the concert I awoke with terrible, incredible pain in my hips and shoulders. My first thought was that it was from the somewhat saggy mattress. When no position would allow me to get back to sleep, I moved to the recliner chair in the sparsely furnished, "well used" room. I spent the rest of the night in the recliner, able only to sleep in 15 minute spurts with position adjustments in between, hoping to ease the pain.

For the next month I was in agony. I finally decided that I'd better check with my doctor so I left a message for him.

----- Message -----
Sent: 8/8/2017 5:41 AM EDT
To: xxxxxxx xxxxxxx, MD
Subject: Visit Follow-Up Question

I need your help. For about 1.5 months I've had pain & restricted movement in my thighs. My stride & posture has improved but other things have started/become worse.
For 2-3 weeks, at night I sleep for 2-3 hours & then have sharp pain in my hips that awakens me every 15 minutes. After 30-60 minutes I go to the recliner for 2 hrs of better comfort but still waking every 15 minutes. After 2 or so hours I go back to bed to do it all over.
For the past 2-3 weeks my neck & shoulders have been very painful. They're very painful when getting out of bed or changing position.
What about Lyme, Zika, rheumatoid arthritis, fibromyalgia, other?
Each visit to massage or chiropractor has given me comfort for part of a day.
Possibly not related but one of my daughters, an RN, has had similar but severe problems for nearly a year. She's been on disability but is now back working. She has something non-specific like RA. Is there a possibility of something familial?
Labs?
Is this normal?

My doctor phoned me at the end of the day with a suspicion of PMR for which he prescribed "a low dose of Prednisone" (20mg). He submitted the order to the pharmacy and within the hour the Rx was ready so I immediately retrieved it. Upon arriving home with the prescription, I dosed (20mg) and within 3 hours felt "amazingly better".

At a follow-up office appointment he reiterated the PMR diagnosis and told me he'd had about 6 patients and that the symptoms "would probably go away after 6 - 8 months". They didn't.

I'm not a doctor but I have (or had?) PMR. In my opinion, whether you're certain or not that you have PMR, focus on the idea of there being inflammation in your body, not just in your affected areas. Read about microbiome and an anti-inflammatory diet. Remove or significantly reduce the "inflammation fuel" foods from your diet like sugar, caffein, alcohol, gluten, dairy, trans fats and processed foods. If you're a snacker, replace unhealthy or unhelpful snacks with fruits & vegetables, for instance. Since the early days of my PMR, I've been having a healthful smoothie in the morning that includes kefir, coconut milk, walnuts, pumpkin seeds, carrot, celery, blueberries, banana, non-dairy protein powder, ground chia seeds, honey and cinnamon. Eat plenty of good fish, not deep-fried, breaded, or other processed varieties. Drink LOTS of water!!!

Think "science" and "whole system approach". Listen to your body and learn about "stuff".

Keep a log of symptoms, labs, meds, pain level, as well as your body's response to changes in diet, meds or activities. Log any other of your observations.

I believe conceptually that PMR is like Lyme disease in that, for both PMR and Lyme, it seems that doctors don't know much about "it" because they haven't experienced it themselves and most have had only a small number of PMR patients (or Lyme patients, for that matter) so they "just don't get it". Therefore, YOU MUST BE YOUR OWN BEST ADVOCATE!

Get a rheumatologist--they know stuff. Mine initially put me on 15mg methotrexate to supplement the Prednisone. Methotrexate, in addition to being a chemotherapy drug at much higher doses, is used for rheumatoid arthritis and is a steroid-sparing drug that boosts the effect of a lower dose of Prednisone but without the side effects of Prednisone. With the rheumatologists encouragement, I supplement my meds with curcumin (turmeric).

xxxxxx xxxx, MD 9 Nov 2020 01:52 PM

The curcumin product you use seems reasonable. I tend to recommend this [Nature's Way] brand, but I think other brands are also fine. Try 1000-1500 mg Turmeric daily for pain management. Turmeric is an Indian spice that has been found to have about the same effect as over the counter anti-inflammatories, but without any side effects. You can find it in capsule form over the counter at Wegmans (and most drugs stores) near the vitamins.
I haven't read that curcumin is better absorbed if taking with black pepper, but I do think there are many companies that combine it in a supplement as it is thought that black pepper also has anti inflammatory properties.

Part of my collection of symptoms during PMR were small lesions on my upper and lower torso. In spite of having had the shingles vaccine, I also had a very light bout with shingles on my scalp. The skin is the largest organ of the body so I focused on getting my skin under control. I showered with Cetaphil Gentle Cleansing bar soap and with Eucerin Calming Body Wash (both recommendations from my dermatologist) and also with regular applications (every few days) of Cetaphil cream on my back, chest, arms and thighs. I used Zim's Max Arnica Homeopathic Medicine. I find it to be amazing at speeding the healing of skin abrasions and lesions as well as those under-skin bleeds that seemed so easy to appear.

Fatigue--early on I decided to let it guide me. If I was tired, I'd let myself take a nap. I slept, sometimes, 10 hours a night... and that in addition to naps during the day, too. I wanted my body to have what it wanted so it could heal as quickly as possible!

I decided that drinking PLENTY of water every day is extremely helpful in many ways. It helps especially by hydrating the severely in-destress muscles but also helps with everything from skin to cleansing the system--washing out the impurities. Even though Rochester, NY reportedly has some of the best treated water in the country, I installed an under-sink reverse-osmosis (RO) water filter. I wanted to do whatever I could to reduce the amount of "undesirable ingestibles" in my system. I feel that the RO-filtered water tasted better so I was inspired to drink it more readily. In addition to drinking probably no more than 6 soft drinks per year, I lost my taste for alcohol and coffee but did begin regularly enjoying Traditional Medicinals organic Turmeric with Meadowsweet & Ginger tea to which I often add honey. If I got tired of drinking plain water, I found that lemon water would renew my interest.

Visiting my chiropractor helped a small bit with PMR but given that I've been dealing with lower back pain since the mid-1970's, I felt that keeping on top of the "anything inflammatory" challenge should include chiropractic. My chiropractor was especially helpful with his knowledge of nutrition and emphasized how having a non-inflammatory diet would help my system deal with PMR and, of course, would help in general, too.

In the beginning and for a while, mornings were more painful until I got moving. I found that slowly pacing around the house not only helped start my day but actually felt good. Later, I found that physical therapy was, for me, bad. It simply hurt and didn't seem to help at all. Looking back, I found that if I did whatever physically I could, that was enough; more didn't help-- it just HURT. After a while, the "enough" of any exercise continued to become more.

CBD cream (CBD Clinic) immediately worked on my larger muscles like hips, shoulders and neck but for me didn't do anything for wrists and hands. I also tried CBD oil (internal) but I didn't notice any benefit from it whatsoever for pain control or sleep.

On 8 Aug 2017 I started on 20 mg Prednisone and about 18 months later had tapered down to about 5 mg but with numerous ups-and-downs. After 11 months with PMR, I started on 15 mg methotrexate. From then onward my Prednisone dosage "need" was never greater than 5 mg but usually nearer to 2 mg. After 18 months of methotrexate (25 months into PMR) my methotrexate dosage was reduced to 12.5 mg and I'll continue tapering until, I expect, it's removed. Know that Prednisone is not your enemy--its purpose is to alleviate the inflammation in your body. Getting off Prednisone on a fixed schedule seems to me to be an unrealistic approach and inappropriate goal. The goal should be to alleviate the inflammation and therefore, pain.

I found labs, particularly CRP (C-Reactive Protein) and ESR (Erythrocyte Sedimentation Rate), to be the telltale. I started with CRP of 104 (nominal range of 0 - 10 mg/L) and ESR of 42 (nominal range of 0-20 mm/hr). When my CRP and ESR labs were down, my pain was down and vice versa. On 21 Aug 2020 my CRP was <1 mg/L and ESR was 2 mm/hr but has been <=1. I've included graphs of my labs below. As of 2 Dec 2020, both labs have been <=1 since then.

  • 2 Dec 2020: It's been more than 3 years since my start with the amazingly painful hips and shoulders of PMR that, back then, eventually lessened as the pain migrated to my left forearm and both wrists. During the first 2 1/2 years with PMR I had numerous ebbs and flows of less / more pain. It seems now that I'm PMR-free and I feel and move better than I have since about 2013. Might PMR have been brewing since about 2010 or so? I find it interesting that in January 2011 I had a C5 laminectomy for cervical stenosis--might there be a connection?
    I continue with the morning smoothie but occasionally substitute oatmeal with ground chia seeds. While have resumed some use of alcohol, gluten, sugar and dairy, I haven't gone back to caffeine (I'm not interested).
  • 26 Oct 2021: As far as I can tell, I still haven't had any PMR symptoms but 2 - 3 times achy hips at night--probably just, thankfully, my increasing age. With the heat of summer 2021 I slipped away from having my morning smoothie and have mostly been having yogurt with blueberries and All Bran. I'm a bit concerned that I'm now not getting the same morning nutrition that I did for the past few years but I just don't have the appetite for such a relatively large, thick breakfast meal.
  • 21 Aug 2022: On 10 July 2022 I discontinued methotrexate and have had no noticeable symptoms of PMR - no aches, pains, or any other unpleasantness that could be associated with PMR or with discontinuance of methotrexate.

With PMR and the dietary change, I initially lost 20 pounds but have gained some back. I'm 5' 10", 70+ years old, and now have weighed 170 since about 2018. For a number of years prior to PMR I had been hovering around 180-183.

I don't consider myself "recovered" quite yet. Check back with me in 10 - 20 years on the "recovered" bit to find out what I think then.

By far, the most comprehensive article that I've read about PMR, published 5 Aug 2020, is Monitoring and long-term management of giant cell arteritis and polymyalgia rheumatica at Nature.com. The article mentions the use of imaging for diagnosis and management of PMR as well as there being new possible treatments for PMR.

Another, what I consider to be extremely informative document about steroid use is Prednisone - Information for patients who take Steroid Hormones - MountNittany.org.

You can learn more about others who are dealing with PMR at:

Articles suggesting that a genetic component may be involved:

Log your experience at:

  • Carezone.com - Access from your desktop/laptop and download to your phone and tablet
  • PatientsLikeMe.com - Learn from others, participate and log your experience

Refer to the following for more info:

PMR Videos

Rochester, NY area

CRP and ESR lab result graphs

6 thoughts on “PMR”

  1. Ty for sharing your journey and the relative articles.
    Information is key to managing this journey and wonderful that you are managing well.

    Reply

    1. Thank you Candice for your comment.
      Feel free, if you feel it’s appropriate, to send others with PMR patients to my site. I’m not looking for “hits” but after participating on the Facebook PMR page for about 2 years and on PatientsLikeMe.com, it seems to me that folks new to PMR are VERY much in the dark about what to expect and where to find info. It also seems to me that the number of people in the world affected with PMR is quite a large number– and growing.

      mak

      Reply

  2. Hi Mike,
    My name is Mary Ramirez and last March 2020, I came down with the extreme muscle aches that most PMR patients experience after having a pretty severe flu (Type A mutant, not Covid). I kept being sent to the Physical Therapist and one pain would subside to be replaced with another in a different area. Have never had this type of pain without having a severe injury. Also, had the extreme tiredness that you had. I am down to wrist pain only and am on a diet by Amy Myers M.D. “The Autoimmune Solution”. Very much like the diet you described and when I started my wrist pain started to subside. I can lift a glass now without extreme pain and can type on computer OK. Was diagnosed with Rheumatoid Arthritis, early stage and the doctor wants to put me on hydroxychloroquine or Arada for the rest of my life! You may not be familiar with these, but I am wary that she has not even mentioned diet to me. I agree with being your own advocate. I am a Registered Dietitian Nutritionist and do believe there are many things that can affect our well being in our diets today and many toxins in our environment. I think it is easy for doctors to just go to pills and not really treat the underlying “cause” of the inflammation. Still don’t understand why PMR was not diagnosed as everything I read corresponds with my symptoms. I feel that your mention of diet and toxins is really important as many people just go to the drugs and do not try and moderate by diet or elimination of toxins. Thank you for your blog and all the sources that you put for reference. Please let me know if you have read “The Autoimmune Solutions” by Amy Myers MD.

    Reply

    1. Hi Mary. Thanks very much for your post. It’s exactly “The Autoimmune Solution” by Amy Myers M.D. that got me onto the anti-inflammatory track. Regarding the meds path taken by our care givers, I feel that nutrition just didn’t get a seat at the table for med students. Of course, there are plenty of the “our product will cure your ills” solutions, too… follow-on’s from the snake oil days. However, I suspect that no solution has been accepted wholeheartedly until it’s proven. It’s complicated!

      Best regards,
      mak

      Reply

  4. Check out https://www.youtube.com/watch?v=zRx2FP4DyTo&authuser=1, a presentation about Inflammation Nation. I found it to be very informative and validating of the ideas I came around to and of the changes I made.
    Today I’m still doing very well and appear to be free of PMR symptoms. My only PMR med is methotrexate (3 tabs=7.5mg) with vitamin E and Turmeric in the mix.

    Reply

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