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Do you have PMR or Seronegative RA?

Polymyalgia Rheumatica (PMR) | Last Active: Dec 30, 2023 | Replies (9)

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@pb50

I have no idea if it’s even possible, but I believe I had PMR initially and it evolved into RA. In 2012 I had an onset that took me from absolutely normal when I went to bed to numb/weak hands the next morning and within 3 days all the big joints were involved - shoulders, hips, ankles, feet - and hands. It was gruesome. I found a great Rheumy (after one not so good one). I was sero negative. But Humira and Methotrexate was a miracle. Until I had to reduce methotrexate so low I wasn’t protected from developing antibodies to Humira. Switched to Enbrel since it doesn’t trigger antibodies. It worked - until it didn’t.

Skip to 2019. Moved to NC and the first Rheumy told me I had Osteo not RA. Blood test for RA FACTOR WAS… positive!! So I had changed since onset. Immediately found another Rheumy since that one was stupid.

I’ve been on Remicade infusions for 3 years or so. So far so good. Praying it lasts. I still flare -which happened after my recent lung surgery. But even that was a blessing because the Prednisone I received confirmed my rib and diaphragm pain was ‘only’ inflammation.

Anyway - I think because of big joint onset and small joints for the duration - plus sero negative then positive, that maybe I’ve had both PMR and RA. Not that it really matters.

Thoughts?

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Replies to "I have no idea if it’s even possible, but I believe I had PMR initially and..."

@pb50, @johnbishop, @slward1951 and all...God bless you! What a long, convoluted, painful debilitating journey through many levels of medical competency. I suppose, welcome to the world of autoimmune diseases. I consider us a very special family of strong survivors.

I'm so sorry for your years of struggles. It's so frustrating and challenging to get to those who are capable of finding answers, and then understanding our treatment and life needs. I'm so pleased for you to find the good help at last. I've had similar struggles, but now with my wonderful Mayo team and my excellent primary doctor, I finally have a stable healthcare life. It took decades, immense frustration, and fighting for survival!

I think it's important for us all to recognize this is a lifelong challenge and we must all take control of our care, proactively. That and the acceptance of my life with challenges are the most healing components of this journey. That was/is my responsibility I take it very seriously.

Merry Christmas, and Happy New Year to you all! I foresee 1924 as a turning point for many of us. My life is surely improving even as I continue to walk through deep swamps and setbacks, thanks to Mayo Connect, Mayo Clinic, and hard work!

Blessings, Elizabeth