1. < Polymyalgia Rheumatica (PMR)
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PMR due to immunotherapy for cancer.

Posted by elizabethvalerie @elizabethvalerie, Aug 27, 2024

I have cancer and receive immunotherapy. Now I have PMR due to an overactive immune system. I had a couple of treatments of the immunotherapy held because I was taking prednisone. Once I got down to 10mg a day I was started back on the immunotherapy. The oncologist is really wanting me to keep tapering. Has anyone else been in this situation? Will I just be able to keep tapering and then the PMR goes away? Has anyone had to stop their immunotherapy?

Interested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) Support Group.

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Mike | @dadcue | May 14 3:36pm
In reply to @reaton1indracom "@csimmonds Thank you for your most thoughtful and detailed reply to my posting. 1) Likewise, my..." + (show)
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@csimmonds

Thank you for your most thoughtful and detailed reply to my posting.

1) Likewise, my response to Keytruda was miraculous ... going from Stage 4 melanoma [and 2 surgeries] to no tumors in 4 months. Clinical studies show that people with strong irAEs [maybe 40%], tend to also not get a return of the cancer.

2) Interesting similarity between your PMR and mine. Initially I had the shoulder muscles affected as well as those of my hips. And, our cases involve the muscles themselves, rather than the joints. I have trouble going down stairs, so somewhat different hip-leg muscles affected but the same group. I find it is curious that the muscles affected control the joints that are usually inflamed by PMR.

3) Yes, mornings are bad too for me: I believe immune inflammation [eg cytokines & IL-6] increases at night during sleep. I have much better afternoons. For rough spots I use Advil in deference to prednisone if possible.

4) Re the duration of the "Keytruda connection" I don't know what you know, so please pardon these details. There are several suspected mechanisms for the development of irAEs that persist long after Keytruda ["ICI" or PD-1 inhibitor] is gone. For example, self-sustaining immune "memory", "epitope spreading" where the immune attack widens its focus, unmasked previous autoimmunity, etc.

5) If you or you oncologist are interested, or don't realize it, there are excellent published studies by a research group headed by DB Johnson, Dept of Hematology/Oncology, Vanderbilt Univ Med Ctr. I can provide references if wanted.

6) In my case PMR struck a previously healed rotator cuff injury, that is a tendon. I didn't do anything to trigger that; it just started hurting so much that they did an MRI of my shoulder to make sure it wasn't something else. And my PMR surged when I fractured 3 bones. The hypothesis is that immune activation for the healing did not turn off properly when the bones were repaired [perhaps some "self-sustaining" immunological response?]

I hope anything I've said is beneficial. Thanks again for your comments. RCE

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@reaton1indracom

This is all very interesting to me. My cancer diagnosis is new so I am trying to rectify what kind of an effect my cancer treatment will have on PMR. It often happens that people diagnosed originally with PMR find out later that they have cancer. I was diagnosed with PMR about 20 years ago so I doubt that I had cancer back then.

I'm currently taking Actemra (tocilizumab) to treat PMR. It is an IL-6 inhibitor that has been a very good treatment of PMR for me. . In cancer patients, high levels of IL-6 are common and often correlate with disease progression, therapeutic resistance, and severe inflammatory symptoms.

Any chance that Actemra would be suitable for you?

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csimmonds | @csimmonds | May 14 10:59pm

Thank you. I learned from your response and find our similarities interesting. It gives me something to talk to my oncologist about at my visit in a couple of weeks. I hold him in high regard and he keeps up with new studies and seems to know a lot about new discoveries about Keytruda. I had stage 4 lung cancer. I feel so fortunate to be alive and the fact that I have not a recurrence or any metastasis. I have had cancer 3 times. Breast caught early, the kidney caught early. Then lung but each separate. I had a mastectomy and one kidney removed due to location of tumor. I can't take Advil (which I really liked) due to low functioning single kidney. I have to depend on Tylenol. This week I am going off prednisone entirely. It seems being 1 mg prednisone did so little that I was better off using Tylenol, accepting bad mornings, and hopefully stay off.. I will start increasing my exercises too. I am interested to hear if my oncologist has heard of a link between Keytruda and PMR so I would like more about the studies. Another interesting thing is that about a year ago I was diagnosed with T-Cell granular lymphocytic leukemia. It is a rare condition that is associated with RA. I think I am asymptomatic unless I don't know what to expect. I appreciate information from this site and hearing of others experience. PMR is certainly not the same for everyone.

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