Do you have PMR or Seronegative RA?

Thank you @slward1951, I did find this discussion of interest! It helped me on my daily mission of learning something new each day. My PMR is currently in remission and I'm hoping to keep it that way by living a healthier lifestyle and staying active. I had not heard of Cryoglobulinemia but a quick search of Connect tells me there has been a lot of discussion on the topic. Here's a link to the search results - https://connect.mayoclinic.org/search/discussions/?search=Cryoglobulinemia.

Hoping for a pain free day for all of Connect friends...and a Merry Christmas and Blessed New Year!

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?

@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

Bless you Elizabeth. And thank you.

Merry Christmas to you all!!

ps… Throttle back on the sweets because you know you’ll pay for it 🙂

Very well stated and all so true. People including doctors have said you look pretty good ( compared to your chart)! I’ve had 12 surgeries in my 72 years. My 91 year old Mom just had her first- hip replacement! I have every piece of medical equipment needed😂 I also know all the questions, research, tricks, and do and don’ts of surgeries/hospitals.
At least I’m a Pro at something!

Have you had Covid vaccine? Before any of your issues began?

@katejaha and all...I had the COVID-19 Moderna vaccine at Mayo Clinic Florida the first day it was available. So, yes. I had a fairly severe reaction to the 2nd shot and a slight reaction to the 1st. I've not had any boosters as I question the voracity of the vaccine and don't want further side effects. I plan to discuss this with my rheumatologist in February when I see him to discuss the new diagnoses of PMR and GCA, with Sarcoid relapse, and a Sarcoid rash on both shins. I'm taking 10mg of prednisone daily for the PMR/GCA and used Kenalog cream for the Sarcoid rashes. The rashes are improved but I continue to have PMR and GCA symptoms.

I have a lot to learn about these new diagnoses. I will and am determined to deal effectively with them. Doggone it! It's so yucky to have autoimmune illnesses pop up as they do. The medical system is learning but it's obvious we continue to be test subjects as they learn. I've accepted that as well as the life changes, but am surely tired of it all. After decades of the learning curve...

Have a wonderful new year in 2024 all my autoimmune friends. As I said before, we are very special, determined survivors. Keep it up! Blessings, Elizabeth

So many autoimmune disorders can mimic RA. It is no wonder that it is hard to differentiate them all. RA whether it be seropositive or seronegative can be differentiated based on a rheumatoid factor (RF) test.
https://www.verywellhealth.com/diseases-that-mimic-rheumatoid-arthritis-190335#:~:text=Psoriatic%20Arthritis,-Psoriatic%20arthritis%20(PSA&text=PSA%20can%20closely%20mimic%20RA,antibodies%2C%20making%20these%20indicators%20seronegative.
There are many more forms of "seronegative inflammatory arthritis" which aren't the RA variety. What about all of the other types of inflammatory arthritis instead of PMR?

I was diagnosed with a type of seronegative inflammatory arthritis called reactive arthritis. It derives its name from a reaction to an infection . I was also genetically predisposed.

Reactive arthritis (ReA) also mimics RA except I was RF negative. It wasn't likely to be PMR because I was 32 years old at the time.

I was old enough to have PMR when I reached the age of 52. My rheumatologist was confused and had a hard time deciding what was going on. I was pleading for prednisone but my rheumatologist wanted me off prednisone so she "could see what was going on." That was when PMR was diagnosed.

My first question was what happened to reactive arthritis. I was thinking reactive arthritis had morphed into PMR. My rheumatologist said it wasn't the case of having one thing instead of the other thing. She said I still had reactive arthritis and it was unfortunate but I also had PMR.

One thing about autoimmune disorders that people aren't aware of. You probably won’t hear that having one autoimmune condition increases your risk for getting another. My rheimatologist now says I have a "full range of rheumatology problems."

"For people who have more than one diagnosed autoimmune disease, it’s called polyautoimmunity. The combination of three or more diagnosed autoimmune disorders in one person is called Multiple Autoimmune Syndrome (MAS)."
https://www.benaroyaresearch.org/blog/mystery-multiple-autoimmune-diseases
There should be a law that says you can only have one autoimmune disorder ... preferably none.

My son had reactive arthritis after knee surgery and went from an athletic 22 yo to more like a 72 yo old man overnight. He was diagnosed at a teaching hospital and had Prednisone plus something and recovered. But it was acute and scary. Coincidentally, Six months later I was diagnosed with RA - also with terrible acute onset.