Arthritis caused by immunotherapy

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I’ve had 4 rounds of pembro and then had to have my surgery bought forward as I wasnt responding to chemo but since my surgery which was 3 weeks after my last chemo I started to get joint pain. It started in my right hand same side as my surgery so thought it was linked. But since then it’s spread to all my joints but my hands are tge worst. I can hardly open and close my fist and doing basic things is so painful. Has anyone else experienced this? I was given steroids for a short time but they didn’t help much and as I have more surgery next week I had to come off them. I’m on naproxen to try to help with the pain but I’m also getting numbness and pins and needles in my fingers, particularly at night. Am worried that is neuropathy as well but could it be linked to the arthralgia? Any advice welcome Pray 

  • Did you have a taxane chemo alongside the pembro (eg Paclitaxel). These drugs are well known for causing neuropathy. 

    Pembrolizumab is a PD-1 checkpoint inhibitor and can lead to immunotherapy related adverse events, where your immune system damages things other than the cancer. An inflammatory response is part of that, so that can feel like you have arthritis everywhere. Talk to your medical team about whether there is anything they can do. As you have found, steroids can help but they bring a load of potential consequences too. 

    I have metastatic TNBC. I suffered a major IRAE from Pembrolizumab with kidney, thyroid and lung damage. I also have persistent inflammation in my spine and bowels with arthritis-like symptoms like you describe as well as a lot of intestinal wind. I spent 9 months on high dose steroids to allow kidney recovery. I have also had 2 sets of taxane treatment - Paclitaxel for my primary cancer, and then NAB-Paclitaxel with the pembro in the metastatic setting, and also have peripheral neuropathy. 

  • Yes I had Paclitaxel too but only three cycles as it didn’t work then one of EC which also didnt work so had 4 Pembro in total before surgery. It’s trying to balance the potential advantages of immuno long term and the short term side effects that sometimes seem worse. Think I’ll speak to my oncology team again.