Polymyalgia Rheumatica (PMR): Meet others & Share Your Story

About "isolating oneself": Hey, an online community is better than no community, right?! As an introvert, I find it easy to choose isolation. When you are ready, you'll know what action you need to take. Now, is "your time".

Good advice! Thank you.

I am not sure if PMR is an autoimmune disease, but we all know that PMR is often treated with prednisone as is lupus. I just read the following about a new treatment for autoimmune disease lupus. This was in MD EDGE that I am sent on a daily basis. It is really unbelievable. Those who know more about what causes PMR can maybe comment on this. I am only coping about a third of the article, but you will get the idea.
A revolutionary treatment for cancers may also be able to treat and reset the immune system to provide long-term remission or possibly even cure certain autoimmune diseases.

Chimeric antigen receptor (CAR) T-cell therapy has offered a novel approach to treating hematologic cancers since 2017, but there are early signs that these cellular immunotherapies could be repurposed for B-cell mediated autoimmune diseases.

In September of last year, researchers in Germany reported that five patients with refractory systemic lupus erythematosus (SLE) treated with CAR T-cell therapy all achieved drug-free remission. At the time of publication, no patients had relapsed for up to 17 months after treatment. The authors described seroconversion of antinuclear antibodies in two patients with the longest follow-up, “indicating that abrogation of autoimmune B-cell clones may lead to a more widespread correction of autoimmunity,” the researchers write.

In another case study published in June, researchers used CD-19 targeted CAR-T cells to treat a 41-year-old man with refractory antisynthetase syndrome with progressive myositis and interstitial lung disease. Six months after treatment, there were no signs of myositis on MRI and a chest CT scan showed full regression of alveolitis.
Dr. Max Konig, assistant professor of medicine in the division of rheumatology at Johns Hopkins University School of Medicine in Baltimore
John Hopkins Medicine

Dr. Max Konig

Since then, two biotechnology companies – Cabaletta Bio in Philadelphia and Kyverna Therapeutics in Emeryville, Calif. – have already been granted fast-track designations from the U.S. Food and Drug Administration for CAR T-cell therapy for SLE and lupus nephritis. Bristol-Myers Squibb is also conducting a phase 1 trial in patients with severe, refractory SLE. Several biotechnology companies and hospitals in China are also conducting clinical trials for SLE. But this is only the tip of the iceberg regarding cellular therapies for autoimmune disease, said Max Konig, MD, PhD, an assistant professor of medicine in the division of rheumatology at Johns Hopkins University, Baltimore.

“It’s an incredibly exciting time. It’s unprecedented in the history of autoimmunity,” he noted.
A ‘reboot’ for the immune system

B-cell targeted therapies have been around since the early 2000s with drugs like rituximab, a monoclonal antibody medication that targets CD20, an antigen expressed on the surface of B cells. The CAR T cells currently available target another surface antigen, CD19, and are a much more potent therapy. Both are effective at depleting B cells in blood, but these engineered CD19-targeted T cells can reach B cells sitting in tissues in a way that antibody therapies cannot, Dr. Konig explained.

“If you have a patient with myositis, for example, where autoreactive B cells are sitting in the inflamed muscle, or a patient with rheumatoid arthritis, where you have disease-relevant B cells in hard-to-reach tissues like the synovium, those cells are much harder to deplete with an antibody, compared to a T cell that evolved to surveil and effectively kill in all tissues,” he explained.

In this process, T cells are collected from patients via leukapheresis and then re-engineered to express chimeric antigen receptors. A few days before these modified T cells are infused back into the patient, the patients are given a low-dose chemotherapy (lymphodepletion) regimen to help increase the effectiveness of the therapy. The one-time infusion is generally given on an inpatient basis, and patients are then monitored in hospital for side effects.

Once B cells are depleted, disease symptoms improve. But in the case studies published to date, once B cells re-emerge, they are naïve and no longer producing autoreactive B cells.

Dr. Carl June

“Maybe it’s like a tabula rasa: You wipe [the B cells] out and start with a clean slate. Then, the immune system reboots, and now it’s working, whereas before it was messed up,” said Carl June, MD, who directs the Center for Cellular Immunotherapies at the at the University of Pennsylvania, Philadelphia. Dr. June and his research team led the development of CAR T-cell therapies for blood cancers.

The findings suggest that autoantibodies “might not be hardwired into the immune system,” he said.

But Dr. Konig stressed that we are still in the early days of clinical trials, and more research is necessary to understand the safety and efficacy of these therapies.

“There’s an incredible buzz around CAR T cells at the moment in rheumatology, which is great because I think that’s where the future is,” he said. “But we still need to learn how to appropriately apply these therapies in randomized, controlled trials.”

So far, the evidence behind CD19 CAR T-cell therapies in autoimmune disease is from case studies and phase 1 trials in a very small number of selected patients. (The upcoming Cabaletta and Kyverna trials in lupus will also be small, consisting of 12 patients each.)

I am experiencing pain again after being on steroids for 9 days. I have not officially been diagnosed with polymyalgia rheumatica yet but I see a rheumatologist soon. My primary care provider believes that's what it is. Pain was so debilitating I could barely get dressed. Sleeping was almost non existent. Tossing & turning all night. Only relief I got was steroids. I would not wish the pain on anyone. And I feel no one understands the depth of pain I was in. A lot of people said you're getting older. Just have to get used to it. Or it's arthritis & nothing you can do. I am hoping I get answers soon so I can understand more what I'm going thru

Welcome @mrspunkin, So sorry to hear that you've joined the PMR club. I know it's not a choice any of us would willingly make. It's good that you are seeing a rheumatologist soon. There are other conditions that mimic PMR but if the pain goes away with prednisone treatment it's a pretty good sign that you have PMR. I think you might find the following video helpful in understanding the condition.

--- Polymyalgia Rheumatica: A Rheumatologist explains
https://youtu.be/QsHIle6u0BY.

You mentioned you have been on steroids for 9 days. Both times my PMR was active, all of my pain went away within hours of my first dose of prednisone (20 mg) and stayed away until the next morning. Do you mind sharing what dosage you were started on?

Hi, I was actually on Prednisone 2 different times. My pain responded very well to them. After I finished the 1st round of steroids pain came back immediately. It was a 6 day dose. Don't remember the milligrams. This 2nd round really helped & pain hasn't really flared as bad as before. I believe I was on 20 mg but not sure. I wonder when I go to the rheumatologist will they still be able to tell if I have pmr since i was on steroids? Pain is light to moderate right now. Thanks

From my personal experience with PMR, no 6 day dose would get rid of it. First time around it took me 3 and 1/2 years before I could taper off of prednisone and be pain free so to speak. Second time around it took me 1 and half years before I could taper off. You might want to take a look at this site to get some ideas on how to prepare for your upcoming appointment with the rheumatologist.

--- The Productive Rheumatology Appointment Guide Learn how to take back control of your appointments and healthcare!:
https://connectedrheumatology.com/the-productive-rheumatology-appointment-guide/

John, thank you for that link. It looks helpful.

Hi all - I am looking to learn from others' experiences and knowledge! After 4 months of Prednisone at 20-25mg for PMR, I started Kevzara last June and then weaned prednisone to 0mg over 16 weeks (I read that in clinical trial of Kevzara the prednisone was weaned over 14 weeks). Over past week have had a bit more shoulder and hip burning off and on, but without stiffness and still have a low normal CRP and ESR. Have others had shoulder and hip pain and still successfully weaned off immunosuppression without getting a full relapse of PMR? (my neighbor successfully weaned with aches and pains and has been off immunosuppression x 1.5 years-- but she is just one person). Thank you all, appreciate learning your stories!!

Welcome @seattleite, You are not alone! I think you might find the following discussions helpful:
--- Starting treatment with Kevzara: My journey: https://connect.mayoclinic.org/discussion/first-dose-of-kevzara/
--- Kevzara (sarilumab) to treat PMR: https://connect.mayoclinic.org/discussion/kevzara-sarilumab-to-treat-pmr/.

Have you made any lifestyle changes to see if they help with the PMR symptoms?