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Questions about joint issues while on nivo/yervoy

Forums General Melanoma Community Questions about joint issues while on nivo/yervoy

  • Post
    Sdmotorcop
    Participant
      I unfortunately made the jump from 3C to stage 4 last week (mets in my lungs, lymph nodes and the psoas muscle). I had a 4.3mm removed from behind my left knee last april. I had one lymph node that had meI in it and started nivo once a month in June. I had a pet scan in December that came back clear. Only side effects I had from the nivo was fatigue and polymyalgia rheumatica like symptoms (extremely sore shoulders, upper arms and hips). My rheumatologist had me do an mri on the off chance I had joint issues. I’m glad she ordered it, otherwise it would have been another month and a half for my next scan.

      My oncologist is gonna start yervoy along with nivo at my next nivo infusion. I’ve read about joint pain / issues while on the yervoy/nivo combo. I guess my question is for anyone who had the joint issues / pain while on the combo. How debilitating was the joint pain? I’m used to the joint pain from the pmr, I’m just wondering how much more the combo will heap on..

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    • Replies
        Bubbles
        Participant
          Hi Bruce,

          I took nivo as a single agent, not the combo…but didn’t want to leave you hanging. S0 – in my 10 years as a Stage IV melanoma patient and researcher here’s my take:

          Arthritic type joint pain is very common as a side effect from immunotherapy of all stripes. Still, the presence of that sort of pain and the degree to which it is experienced varies a great deal person to person. Some folks push through it using NSAIDs. Some folks need stronger pain relievers. Some folks have to stop therapy and even require treatment with remicaid, etc. Others have little to no joint issues. Here are scattered reports on joint pain in particular: https://chaoticallypreciselifeloveandmelanoma.blogspot.com/search?q=joint+pain

          Sadly, given the vagaries of these responses, you won’t know how immunotherapy is going to affect you until you try it. Sorry there is nothing more definitive that I can offer. But, forewarned is forearmed and I bet you can handle whatever is thrown your way. I wish you my best. Celeste

          MelMel
          Participant
            I can completely relate however being that the pain became much more severe, three months after receiving Opdivo, I am certain it is to blame. Initially, I was on a combo. While it may be only my personal experience, adding Yervoy is unlikely to make your arthraglias worse. In either case, I would be more concerned about the other side effects you may experience.
            Good luck with the new treatment.
            Melanie
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