Hello
My husband is 46 and was diagnosed with NSCLC last year. He has PDL of 90% but is stage 4. Before his diagnosis he suffered with psoriasis for many years and was on adalimumab which held it at bay. He had to come off that when he started Keytruda as apparently it can make it less effective- although we had very conflicting advice about this. He now appears to have immunotherapy related severe joint pain, possibly linked to his psoriasis and so they have paused Keytruda whilst he has some steroids. I’m confused and anxious because we don’t want to stop the treatment as he’s had a goos response (however I understand why) but surely when they restart the joint pain will just come back. We really want him back on the Keytruda. I guess I’m just asking for some reassurance if people have had similar the oncologists we have all seem devoid of normal social skills and are either rude or act like they are from another planet where people don’t communicate with words.
Hi Margot,
I was on Keytruda and among my side effects I had pain in my right shoulder (diagnosed as bad bursitis by the GP who recommended surgery) and left elbow and right hip. My knees weren't too happy either. Certainly bad enough to stop some of my previous usual activity. I was fine as long as I didn't move much, but then if I hadn't moved the pain was much worse when I did move. I used 400mg Ibuprofen to take the edge off (careful! not on an empty stomach!) and told myself at least I'm alive to feel this bad instead of pushing up daisies. Since coming off Keytruda (treatment was successful - yay!) those pains gradually subsided and are now gone.
90% - wow! That's good, I was only 80% and it saved me.
Hope things work out well for you and your husband.
kind regards
Steve
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