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What does immunotherapy-related arthritis feel like?
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What does immunotherapy-related arthritis feel like?

› Forums › General Melanoma Community › What does immunotherapy-related arthritis feel like?

  • Post
    • March 1, 2019 at 4:52 pm
    cjm22
    Participant

      Over the past 4 weeks or so my husband has developed pain in one of his shoulders. He's dislocated both shoulders many times and they're just generally weak and crotchety, but the pain has been slowly increasing over the past 4 weeks and I was just wondering what people's experiences with immunotherapy-related arthritis have been like.

      My husband has been on Keytruda since November and Yervoy since about, well, 5 weeks ago (so kind of lines up with the shoulder pain).

      As far as we know the most recent PET scan from two weeks ago didn't show activity in his shoulders, but we didn't think to ask. The pain seemed quite mild at first and related to yet another regular funky shoulder thing of his.

      But the past few days, if he lifts his arm too high, his shoulder reaches a 5 out of 10 in pain. Sometimes when he is trying to sleep the pain keeps him up if he can't find the right position. If he leaves his arm down, the pain is 0-2 out of 10.

      He says it feels like a pulled muscle more than anything. Neither of us have any other experience with arthritis so nothing else to compare it to.

      I'm just worried it's another new met.

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        • March 1, 2019 at 5:13 pm
        mandyjill
        Participant

          That sounds very similary to the muscle and joint pain I have had with an Opdivo/Yervoy trial.  A low dose prednisone helped a lot.  Just fyi, it doesn't go away quickly.  I have been done with my treatments for 6 months and am still experiencing some pain.  It goes away as soon as I get back on the prednisone.

            • March 1, 2019 at 5:40 pm
            cjm22
            Participant

              Okay that's a little reasurring!! We ended up leaving a message with his oncologist today just to let her know that there is a new symptom. I hope it's just ("just"!!!) arthritis. Weird that it's only in one shoulder though, right?

            • March 1, 2019 at 5:38 pm
            mandyjill
            Participant

              That sounds very similary to the muscle and joint pain I have had with an Opdivo/Yervoy trial.  A low dose prednisone helped a lot.  Just fyi, it doesn't go away quickly.  I have been done with my treatments for 6 months and am still experiencing some pain.  It goes away as soon as I get back on the prednisone.

              • March 1, 2019 at 5:45 pm
              cancersnewnormal
              Participant

                I didn't develop the arthritis until much further into treatment, but it did indeed begin in a previously injured area. It came on slowly, just as your husband's shoulder has. It eventually spread to other joints along the same side of the body. Began in my neck, then my shoulders, fingers and elbows got involved. Eventually, my right knee ballooned, so the aches and pains that i was feeling were suddenly "visible" with inflammation. The sooner docs can get some control over that, the better your hubs will be for preserving the joint from any further damage. His doctors can do blood labs for inflammation markers. That might be a quicker answer to the question than awaiting his next CT scans. Xrays are also a way of looking into things. 

                  • March 1, 2019 at 6:45 pm
                  cjm22
                  Participant

                    Thanks for all this information!! The pain does seem to be affecting his neck a little, too. But maybe he just slept funny. It's always so hard to decide what's cancer pain vs normal pain. Hopefully a) this is just arthritis or a regular old pulled muscle, and b) if it is arthritis, the docs can fix it pretty quickly for him. Sorry to hear you went through so much!! Hope you're on the mend now.

                    • March 2, 2019 at 7:43 pm
                    cancersnewnormal
                    Participant

                      Sulfasalazine cleared up the inflammatory arthritis… and I've been off treatments since July 2016. Still here… still clear! The arthritis is becoming a better (and unfortunately more common) known side effect of the immunotherapy drugs. The bummer, is that not everyone responds to the treatments for it. Sooooo… they end up free from the cancer… but then have all the aches and pains of arthritis. Ugh. 

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