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Keytruda side effects: How did you manage them?
62 year-old male, previously in good health and physically active until my world was turned upside down with a diagnosis of Stage 3b Clear Cell renal cell carcinoma in December of 2024. Complete right nephrectomy at the end of that month, now getting immunotherapy in hopes of preventing the cancer from returning or spreading.
3 weeks into Keytruda (I’m on 400mg every 6 weeks) and main side effects so far are joint pain, with tingling/slight numbness feeling in left hand fingers. Joint pain seems more centered in left hand and left knee - ironically my left wrist has been broken twice and my left knee has been operated on twice. I also have low back pain, where I’ve had herniated disks in the past.
Does anyone know if this correlates to the drug being most likely to affect areas where arthritis may have been starting? And does anyone who has experienced the pain and tingling/numbness in their hand(s) had it improve during immunotherapy, stay the same, or get worse?
I’m asking largely because I can’t work with the symptoms as they are (I need control for fine motor skills), but could return to work when the symptoms are gone. Thanks in advance for the replies.
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Colleen, Thanks for sharing the article on antihistamine use during immunotherapy. I will be sharing it with my Oncologist as they had me taking both an H-1 and H-2 blocker during chemo and looks like the H-2 blocker may have made the immunotherapy less effective. Good to know in case I decide to go back on Keytruda!
@colleenyoung I can sleep through the night, however since I am well hydrated ( drinking a lot of water) I get up once during the night, usually around 3 am to go to the bathroom. Right after my nephrectomy, I would get up every, (less than 2 hours) to go.
What I’m learning is that everyone is different and one’s body can react to a wide range of side effects and trying to predict them can be worrisome.
Thank you and Happy Thanksgiving!
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1 ReactionMy arthritis flared dramatically about 7 hours after my fist keytruda infusion. Prednisone helped.
In my case, within 6 hours of my first keytruda infusion I had severe debilitating pain in both arms and could not lift a water bottle with both hands. That was Nov 7, 2025. I was prescribed 40 mg prednisone and by morning I was much better. Today is Dec 11 and I am still suffering with arthritis flare ups.
I should have had a CT scan first before starting Keytruda. Then if cancer presented itself I would address it instead of rushing to Keytruda. I may not have further infusions. It’s been really bad.
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1 ReactionAbout six hours after my first infusion of keytruda I had a severe debilitating reaction. I couldn’t lift a water bottle with two hands.The reaction persists with RA flares. I’m taking prednisone and hydroxychloroquine and Tylenol which are only somewhat helpful, but not a cure all.Now I have to decide whether or not to have a second infusion.Any insight would be greatly appreciated. Will I have a similar reaction, better or worse?
I am interested in how others have tolerated Keytruda. My husband had his kidney and ureter removed in December. Now he is scheduled to begin Keytruda infusions once every 21 days for a year. How much discomfort should be considered too much? How have others managed Keytruda?
Thanks.
So glad to find info about Keytruda. My husband will begin Keytruda infusion next week, once every 3 weeks for a year. We will see how he reacts. He is active now after his kidney removal in Dec. He doesn't want to go backwards in being active. We'll ask about the Clartin and Pepcid. Thanks.
I hesitate to reply since I am not a medical professional. All I can do is to relate my experience which I have been told is unusual. Six hours after my first and only infusion thus far, I was so weak and in so much pain I could not lift a water bottle with both hands. After 40 mg prednisone and oxycodone ( don’t recall the strength) I was much better the next morning. I had that first infusion Nov 9. Today I still have weakness and pain and it does affect my day to day activities. I’m currently on 2.5 mg prednisone and 400 mg hydroxychloroquine daily. I’ve been on three prednisone tapers which helped but the side effects aren’t gone, but certainly less than they were.
I have a surveillance CT scan in March and if there is cancer present I will reconsider.
Ask your doctor if there is something to take before the infusion in case the side effects are like mine.
I’d like to hear about your husband’s experience if you’re willing.
@vickipm use ChatGPT or something similar to ask questions. Learn as much as you can. It helped me!
@mah7925 thanks.