PMR Anyone?

I have several autoimmune problems including PMR and often experience itchy scaly knuckles and back of hands. Ordinary coconut oil is great. Possibly warm it a bit if you live where it's cooler. Also on dry, itchy arms and legs !!!

I was diagnosed in January with PMR but had extremely low c r p values and we weren't convinced that it was PMR. Over the following months turned out it was and that 10% of the people who have PMR have high CRV values. I've never taken medication, I'm 72 and was in excellent health when this happened. After much research oh, I decided to pursue the Paleo diet approach, which is almost the same exact thing as the Terry Wahls diet. Terry Wahls, who recovered from aggressive MS with her approach, recommends giving it a hundred days. I'm on day 27 today. I can monitor it enough to be tolerable with Advil twice a day, but it can be painful and definitely not normal. So far, no improvement and one day I decided to take no Advil the next morning was so painful that I considered prednisone right then . I take one Advil when I go to bed with some coconut milk and another 425 hours later in the middle of the night. I'm taking a big gamble to see if this works so that I don't have to take prednisone. You might want to check this out. You can Google the Paleo Approach and or the Terry Wahls diet.

@steve9900, Thanks for sharing. Good luck on your progress. I really do think diet plays a part in PMR and most autoimmune diseases. I'm currently not doing Paleo but am eating a lot healthier and controlling my weight as I think diet helps me keep my PMR in remission.

Paleo Diet to Ease PMR Symptoms | What Is Polymyalgia?:
-- https://www.whatispolymyalgia.com/diet-nutrition/paleo-diet-for-polymyalgia/

Eurasian Journal of Medicine and Oncology -- New Suspects for Polymyalgia Rheumatica! Unconscious - Diet and Stress: A Case Report and Review of the Literature:
https://ejmo.org/pdf/New%20suspects%20for%20Polymyalgia%20Rheumatica%20Unconscious%20diet%20and%20stress%20A%20case%20report%20and%20review%20of%20the%20literature-0064.pdf

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?

Does everyone have a rheumatologist, or just a GP?

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/

Thank you John, appreciate any info that cab=+

Sorry hit a wrong key. I do appreciate any info that can help through the tourture I am feeling. do you have a rheumotoligst?

I was diagnosed by a rheumatologist and referred to him by my primary care doctor.

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.