PMR or Rheumatoid Arthritis?

[A77bruin]

I have been treated for PMR and been on prednisone since July 2021. I have had 13 infusions of Actemra over the past year. I have had many ups and downs, including being weaned very slowly off prednisone and having to go back on it. Although there is no proof, I truly believe that having two shoulder replacements is due to the damage that prednisone did to my tissues and ligaments. Both rotator cuffs tore and when they tried to operate and fix one, once I got down to 5 mg of Prednisone, it failed so the doctor had to replace both shoulders with implants.

I had something called Vaughan Jackson syndrome - where I had a spontaneous rupture of a tendon in my pinky. If you look it up, it says this is, or can be related to rheumatoid arthritis.

In the past 10 weeks or so, I have been having tremendous pain in one of my shoulders. I went to my orthopedic surgeon, and he did an x-ray, a CT scan, and a bone scan and everything turned up normal. This has led me to believe it could be PMR related.

In the meantime, I am also having major stomach issues. On a test called “calprotectin”, your “score” should be under 50. Mine was 1460, meaning there was a very high level of inflammation in my intestines.

Fast forward to today. I was telling my rheumatologist about everything that has been going on and she says it’s time to change things up. Now she is thinking that either PMR has morphed into rheumatoid arthritis or perhaps I was misdiagnosed from the beginning. She is taking me off of Actemra infusions and putting me on something called REMICADE infusions. She is even wondering if I could possibly have some type of inflammatory bowel arthritis (or whatever she called it!)

Does anybody have any thoughts on anything I said? Sorry to be so lengthy, but I wanted to get everything in.

I truly appreciate your input.

Bobbie

[PMRpro Ambassador]

It can be a bit complicated. LORA/EORA, late onset RA can present looking identical to PMR - I don't believe it "morphs" into RA at all, I think it was just it is impossible to tell the difference in the early stages (studies have been done).

That Actemra did not result in total remission is a year doesn't surprise me in the least - in GCA it only works to get patients entirely off pred for half - there are at least 3 different mechanisms for the inflammation and Actemra only works on one of them. If the others are present, you still need some pred and I doubt it is any different for PMR or PMR due to LVV. And PMR can last a long time, far more than a year. I've been on Actemra for well over 2 years and remain at 7mg which only just holds the other inflammation which surfaces now and again.

Does pred damage soft tissue? Possibly. Especially if you don't moderate activity, But every patient is different and I can't identify any problems after 15 years on pred. Is it PMR or not - difficult to say but doctors, especially in the USA, want everything to be done and dusted in PMR within 2 years - but it doesn't work like that.

However, there is obviously something in the GI tract - and Actemra can make diverticulitis worse. Has she considered that? If it is PMR and not her other suspicions, Remicade/infliximab won't help, TNF inhibitors aren't recommended for PMR as they don't target the main cause of inflammation. Patience is the watchword in PMR and here too only time will tell.

[cranberryt]

A year into my PMR diagnosis I started with severe diarrhea. I tested positive for celiac (blood test) and microscopic colitis (colonoscopy). They say once you have one auto immune others are apt to follow.