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PMR due to immunotherapy for cancer.
Polymyalgia Rheumatica (PMR) | Last Active: May 14 10:59pm | Replies (12)Comment receiving replies
I have "PMR" due to Keytruda treatment for melanoma. I would like to hear from anyone with this "immune related adverse effect". I put PMR in quotes because my version of PMR is not the usual bursitis inflammation but rather inflammation of those same pelvic and pectoral girdle muscles surrounding the usually inflamed joints: femur adductors, glutes, hamstring muscles and [not so much] pectoral musculature. Probably this is some type of myofasciatis. To be clear, I have no joint pain; ie, no pain with passive movement of a limb. I've had no loss of strength, only pain upon muscle contraction. [There are some small clinical studies using MRI describing my, myofasciatus, version of PMR]. Rheumatologists automatically assume I have RA. Wrong. For me, soon after Keytruda treatment any antigenic challenge caused this muscle pain. Later, major PMR-like symptoms had a sudden onset with a case of sciatica: I couldn't even turn over in bed, and I went on 15 mg prednisone per day. As I tapered down from the prednisone, due to my loss of agility I tripped and fractured 3 bones. That made the PMR worse, and I had to go back up to 15 mg prednisone per day. Accompanying the muscle contraction pain, I have what some call "autoimmune fatigue". That is now helped with daily doses of Modafinil. Now, almost 3 years later I am off daily prednisone. But even putting on my socks is still a challenge, and I still have resurgences of PMR. Resurgences require temporary prednisone courses. In between the resurgences, the ongoing fatigue and weakness continues. That is, I'm not back to "normal": mornings are always slow, and I cannot do more than about 2 hr easy physical work in the afternoons. My university med sch oncologist understands all this; other physicians, including rheumatologists, nope. Anyone with an experience similar to this and care to comment?
Replies to "I have "PMR" due to Keytruda treatment for melanoma. I would like to hear from anyone..."
@reaton1indracom I found your post very interesting. I am not sure my experience relates but I am giving it a lot of thought. I was on Keytruda in 2019-2020 for lung cancer. When it stopped working I was put on a more aggressive chemo. It worked, tumor gone, and has not returned--sort of a miracle I think. I have heard Keytruda continues to work even after treatment--which is positive. I was diagnosed with PMR 14 months ago, although I had symptoms for months before. That seems like a long time between Keytruda and PMR but maybe my PMR was present earlier. My pain is in the muscles in my shoulders, particularly the top which seems strange. Stretching with resistance bands helps a lot. My other pain is in the upper back of my legs--hamstring and gluts. It is painful to walk up stairs. This pain in harder to work on even with exercises I got from a physical therapist. It is definitely muscle pain and not joint. Mornings are bad. Even before I get out of bed I am in pain. After I get up the pain starts to go away and by mid afternoon I feel normal (except for stairs) Sitting is my enemy but it is not easy at age 78 to move constantly, I also experience fatigue. I have been tapering off prednisone and am now trying zero. I was at 1mg every other day and don't think it was making a difference. This week will be my first without any. I take Tylenol. I have an appointment with my oncologist in a couple of weeks. I have the highest regard for his expertise and will ask him what he thinks about the Keytruda connection. Until then I will keep moving and not make any plans for my mornings.
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@reaton1indracom
My story is very similar to yours. Immunotherapy for metastatic melanoma which was working great until the PMR started. High dose prednisone (20mg per day) which the oncologist wanted to have me wean down to 10mg per day before starting my treatments back up. Basically we worked at getting down to the 10mg, but I couldn't tolerate that low dose. (I have never gone back on the immunotherapy- my oncologist says that my body is telling me that it has had enough). I am now working with a rheumatologist working on a taper again. It's very frustrating.
I will try to think of any hints I could give you. Unfortunetly I had a brain met that bled so my writing skills aren't great. I am thrilled to still be able to read.