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Sun, Mar 24 5:21pm · Polymyalgia rheumatica in Autoimmune Diseases

I think early onset may be more common than is reported but is misdiagnosed as the more common pattern is 70+. I am 73 and recently dx’ed. Going through medical history with my med team, it is obvious I had a much earlier onset.

IMHO, nothing is gained from a quick reduction in dose that 2 weeks later still leaves you in pain. You have to adjust doses to your every day life, everyday stress and all.

For me, I journal daily in an app that allows me to track exercise, nutrition, rx dosing and notes on pain level, stress or anything else noteworthy.

Doctors rely on data points to guide decision making.

I found this article helpful:

https://www.practicalpainmanagement.com/amp/16020

Thu, Mar 21 4:06am · Polymyalgia rheumatica in Autoimmune Diseases

Thanks for your reply. My response to prednisone was immediate. I had been treated with it sporadically for systemic tendonitis and bursitis and by injection for rotor cuff tears. No one connected the dots with PMR. l am at ll mg from 20 mg initially about 45 days ago. It is amazing to be able to move.

Thu, Mar 21 3:53am · Polymyalgia rheumatica in Autoimmune Diseases

I hope you get good support from your new specialist. Normal SED and CReactive protein labs occur in about 20% of patients according to my rheumatologist and is reported in the literature.

Thu, Mar 21 3:50am · Polymyalgia rheumatica in Autoimmune Diseases

Yes I do. We I am hearing impaired. I notice the tinnitus more at night.

Thu, Mar 21 3:48am · Polymyalgia rheumatica in Autoimmune Diseases

Thanks John. I will check this out.

Wed, Mar 20 7:28am · Polymyalgia rheumatica in Autoimmune Diseases

Thank you for the article. l have had undiagnosed PMR for two decades +. I was in a very bad mva and received R 131 for Graves Disease the same day, my first auto immune disease. l had excrutiating cervical, lumbar, shoulder and hip pain and headaches. Mornings were the worst. I am sure the trauma of the car accident combined with the radiation triggered the PMR. Countless doctors and no one caught this. I was told I had fibromyalgia. Eventually I learned from a neurologist at Stanford that l had had a brain injury in the car accident. The orthopedic damage and torn rotor cuffs made it hard for doctors to dx. l was told I had a central pain syndrome. About six years ago l was assessed at Stanford which led to me declining a recommendation for a spinal fusion and my relying on a very caring pain doctor. Botox injections were added for the almost daily migraines. Rescue shoulder injections of cortisone every six months and laser ablation proceduree for my neck and lower back. Oral opiates and NSAIDS. Despite all this, the pain was ever present.

I suggested PMR to my primary practice. I was told since my SED rate and C Reactive protein were normal, it could not be PMR. I finally insisted on a referral to an excellent rheumatologist in San Francisco earlier this month and he immediately dx’ed me with PMR.

l feel like I have gotten out of jail. l was started on 20 mg in Feb and quickly told to reduce by my primary who was very skeptical that it was PMR. l am now at 11 mg. Will try 10 by April. I am also looking for a new primary practioner.

l am 73. l was 48 when this all started. I think many cases of PMR are missed and confused with other conditions. I am now able to walk, get out of a chair, put on shoes that tie, use a recumbent bike and have pain free mornings. l am following a gluten and sugar free Paleo diet. l have not gained any weight since going on the prednisone but acquired 50 pounds over the last 25 years from inability to exercise so I am hoping to lose that. l have Sicca syndrome ( again normal labs) which l was told I could not have as well.

Sat, Mar 16 4:44pm · Polymyalgia rheumatica in Autoimmune Diseases

I am wondering if others have had a missed dx of PMR and if so, for how long? l have recently been diagnosed by a top rheumatologist as having PMR despite normal labs. I have had crippling pain for years. I was told over and over again by other doctors it could not be PMR because my SED rate and C Reactive Protein results were normal. Dx’ed Graves in 1993, fibromyalgia 1996.
Prednisone feels like a get out of jail card. Started 2/14/2019. Now at eleven mg.