Cause of PMR

Thank you for posting this. I had previously read that women have a greater incidence of autoimmune diseases because they have 2 x chromosomes ( men have an x and a y) and most of the genes regulating the immune system are on the x chromosome. This leads to a complex system of turning some genes on and off because there are 2 copies. If that system goes awry autoimmune diseases can occur. This article seems to agree with that idea and expand on how the process works. I can't say I totally understand it but will keep adding to my knowledge about this disease!

Read it and agree. A little bit technical but understandable in spite of that. Well worth the read. It told me things about my body that I didn't know and that's a plus. Let's hope it leads to a form of treatment.

I think you did a beautiful job summarizing the information! Thank you!

Wondering how in the world I ended up with this disease. I’m nearly 75, white female who has been healthy my whole life. I’ve always been active and cook my own healthy meals. No fast food, no simple carbs, no fried food, some sugar but not a lot. Around the beginning of January I began to notice some carpal tunnel symptoms in my right dominant hand. Soon after I began waking up with aching biceps in both arms. Then one morning I woke up and felt like I had cement in my arms, shoulders thighs and hips. I literally couldn’t do anything. Luckily I have a husband in good physical shape who assisted me with everything.
I immediately started researching on line and found information on PMR. I got an appointment with my GP who is an internist and she examined me and ordered a full battery of tests. My symptoms and labs came back as textbook PMR. She gave me an urgent referral to a rheumatologist and started me on 15 mg prednisone and gabapentin for my arm and wrist pain. In a few days I was about 75% improved with the exception of my right bicep and inability to use my right hand. I was able to see the rheumatologist in about a week. After his evaluation he started me on methotrexate 2.5 mg 5 tabs once a week and folic acid and continued prednisone 15 mg daily. He said the methotrexate would help me with the titration of prednisone. I have osteopenia and I guess it’s supposed to help prevent more bone loss from the prednisone. I’ve put myself on a strict diet, no salt, no sugar (a little honey) and eat calcium rich food and 5,000 iu vitamin D. Some other support groups I’m in are trying to warn me about the terrible side effects of methotrexate. After my first dose this week I’ve had no side effects yet. I just try to keep moving and drinking lots of fluids. I’m still in a state of denial about the fact that this disease can last for years, in and out of remission, and that I may have to take either or both prednisone and methotrexate for the rest of my life, putting me at risk of dying from Covid or some other virus or infection. Is it the fact that I’ve come in contact online with so many others who have been newly diagnosed with this relatively unknown disease (even many doctors have had no experience with PMR) that I feel it’s something in our environment or vaccines that’s causing more of it to occur in the last few years? Anyone else having these thoughts ?

As a bit of encouragement, I had a severe case last year and have bern off steroids since mid November. I think my case was multifactorial…many life stressors combined with a few injuries, combined with covid vaccines, combined with low b12 combined with bad reactions to an amino acid supplement designed to naturally increase growth hormone combined with a bad reaction to nsaids taken to try to help myself of the emerging aches and pains. I was 71 at the time.

How much prednisone were you started on and what was the titration schedule?

I knew about PMR because my father had it around 30 years ago. He later got the more serious form, GCA, and almost died from it after a month in the hospital with no diagnosis. I think perhaps doctors are getting better at diagnosing PMR but it has been around. The encouraging part of the story is that my father lived to 103 with very good mental and physical function up until a few weeks before he died.
I notice that many people posting on this forum write that they have had healthy lifestyles. Of the 6 people in my birth family I would say that my father and I fit that profile more than other members: never overweight, exercised, ate a good diet. Maybe we avoided heart disease, cancer and diabetes so something else got us!
Like you I am on prednisone plus methotrexate and am concerned about getting infections from too much immune suppression. When I first got on the methotrexate I had symptoms of a urinary infection and the dose was lowered. I'm in discussion with my rheumatologist now about maybe lowering the dose again due to possible oral thrush. Hopefully these more minor infections will show up before anything major! I recommend staying vigilant and in communication with your doctor.