Keytruda side effects

Posted by ebdent88 @ebdent88, Apr 16 9:22am

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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Profile picture for mah7925 @mah7925

I’m 78 year old male and had my left kidney removed with renal cell carcinoma on 9/24/2025. Today is 11/11/2025. I had my first Keytruda infusion on 11/7/2025, 400 mg.
Within 5 -7 hours I had severe muscle pan in both hands, arms and shoulders. I could not lift a water bottle with both hands for example.
I do have arthritis.
I took 40 mg prednisone that night and by morning I was so much better.
My oncologist doesn’t know what to do relative to Gavin the second infusion in 6 weeks. Trying to work with my rheumatologist to come up with a solution if I have a second infusion or whether the benefit of Keytruda is worth the pain.
What’s very frustrating to me is that there is no clear answer or direction. Don’t know what to do, if anything, at this point.

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@mah7925
What degree of success did they have withe the nephrectomy? i.e., did they get all the cancer? Why are they having you take Keytruda?

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Profile picture for gangcarotid1 @gangcarotid1

@mah7925
What degree of success did they have withe the nephrectomy? i.e., did they get all the cancer? Why are they having you take Keytruda?

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@gangcarotid1 they removed the kidney and adrenal gland and the pathology showed negative margins. The Keytruda was recommended to boost my immune system to fight off any stray cancer cells.
My severe adverse reaction to Keytruda including other immunology drugs probably means I will stop immunology and pray!
I’ve changed my diet to keep my other kidney healthy.

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Profile picture for mah7925 @mah7925

@gangcarotid1 they removed the kidney and adrenal gland and the pathology showed negative margins. The Keytruda was recommended to boost my immune system to fight off any stray cancer cells.
My severe adverse reaction to Keytruda including other immunology drugs probably means I will stop immunology and pray!
I’ve changed my diet to keep my other kidney healthy.

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@mah7925
I had 10% of left kidney removed (1 large, 1 small tumor) at Mayo Rochester, Oct. 2024. So grateful to Dr Sharma. I have strongly committed to following a healthy diet, and am eating for my labs. A 1.3 cm cyst was seen on the right kidney last year, which they've been watching; 3 mos ago, they said it is now suspicious for neoplasm and will evaluate at next visit. Since my labs have remained near perfect w no symptoms, I've been allowed to have every-6-months visits instead of 3 mos. So March/April 2026 they'll look again a nodule was discovered in my right lung 3 mos after kidney surgery last yr, which theyre also watching; it has remained unchanged. I have never had to have any immunotherapy, chemo, or radiation or ablation. So, was curious. Thanks.

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I had a right nephrectomy in June 2025…DX: clear cell renal carcinoma. I started on Keytruda in July and get infusions every three weeks until next July. I had to stop taking Diclofenac, which I was taking for arthritis and told not take any anti-inflammatories due to possible bleeding. I have had a lot of bone and muscle pain and hurt with mobility. This has made sleeping difficult because I wake up to change positions.
My oncologist tells me to take Tylenol which does nothing. I never thought it would make me so irritable at times. Okay. That’s enough “boo-hooing” for one day. Suggestions???

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Profile picture for mah7925 @mah7925

I’m 78 year old male and had my left kidney removed with renal cell carcinoma on 9/24/2025. Today is 11/11/2025. I had my first Keytruda infusion on 11/7/2025, 400 mg.
Within 5 -7 hours I had severe muscle pan in both hands, arms and shoulders. I could not lift a water bottle with both hands for example.
I do have arthritis.
I took 40 mg prednisone that night and by morning I was so much better.
My oncologist doesn’t know what to do relative to Gavin the second infusion in 6 weeks. Trying to work with my rheumatologist to come up with a solution if I have a second infusion or whether the benefit of Keytruda is worth the pain.
What’s very frustrating to me is that there is no clear answer or direction. Don’t know what to do, if anything, at this point.

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@mah7925, how are you doing? Have you had any additional Keytruda infusions? How did it go?

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I’m still not sure if I want a second infusion. I learned I may be able to take either 10 or 20 mg prednisone for two days before my next infusion hoping for less severe side effects. I’ll also have oxycodone on hand just in case the pain is too severe. I know and understand that the benefits of keytruda is offset by prednisone.
My next oncologist appointment is Dec 9 at the Florida Cancer in Davenport FL with a planned infusion on Dec 19.
Evidently there are no definitive or scientific answers since everyone is different.
While the pathology showed negative margins, there is a small chance that I still have microscopic cancer cells floating around my body.
It took me some time to accept this incidental discovery and now just trying to make the best decision for me.
What complicates this, I have either rheumatoid or osteoarthritis and that’s why (I think) I had such a severe flair up.
I just started taking hydroxychloroquine prescribed by my rheumatologist to lessen the stiffness in my hands and I’m finishing up a prednisone taper with five days left as of this writing.
I can tolerate the stiffness and use 650 mg Tylenol for pain which is marginally effective.
Any comments or counsel would be appreciated.

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Profile picture for beebe @beebe

I am on Keytruda along with carboplatin and Taxol. After my first infusion I experienced aching from my knees on down at night while trying to sleep. Some people find relief from bone pain with Claritin and Pepcid AC. They are both histamine blockers. My second night I took Claritin and Pepcid before bed and had no pain or spasms. You might give it a try.
From the Keytruda I have experienced skin rashes and itching and have found it attacks the areas that had eczema as a child, so I think your supposition about Keytruda attacking areas that had previous inflammation may very well be correct.
Are you using the cold mittens and gloves during chemo to help prevent neuropathy? My oncologist also recommended 10mg L-glutamine/day and 100mg of Vitamin B6 (Pyridoxal phosphate, 5-P-5 form) to prevent neuropathy. If you do acupuncture for neuropathy I have read that the treatments should be weekly.
Do you think your treatment every 6 weeks could cause more side effects since it would be a higher dose than if administered every 3 weeks? I have wondered about that but not read anything to confirm my suspicions.
Hang in there!

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@beebe
My son gets his every 6 weeks. He was prescribed this from Brigham and Women’s Hospital in Boston. He had some itching. He will get 9 treatments and is on #7. He is 54 with Stage 3 and all clear margins surgically. The Claritin and Pepcid action makes sense as anti inflammatories..

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Profile picture for annie0180 @annie0180

I had a right nephrectomy in June 2025…DX: clear cell renal carcinoma. I started on Keytruda in July and get infusions every three weeks until next July. I had to stop taking Diclofenac, which I was taking for arthritis and told not take any anti-inflammatories due to possible bleeding. I have had a lot of bone and muscle pain and hurt with mobility. This has made sleeping difficult because I wake up to change positions.
My oncologist tells me to take Tylenol which does nothing. I never thought it would make me so irritable at times. Okay. That’s enough “boo-hooing” for one day. Suggestions???

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@annie0180 there are some good discussions below regarding Claritin and Pepcid!

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Profile picture for susanris @susanris

@annie0180 there are some good discussions below regarding Claritin and Pepcid!

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@susanris how do I find those discussions on here?

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Profile picture for annie0180 @annie0180

I had a right nephrectomy in June 2025…DX: clear cell renal carcinoma. I started on Keytruda in July and get infusions every three weeks until next July. I had to stop taking Diclofenac, which I was taking for arthritis and told not take any anti-inflammatories due to possible bleeding. I have had a lot of bone and muscle pain and hurt with mobility. This has made sleeping difficult because I wake up to change positions.
My oncologist tells me to take Tylenol which does nothing. I never thought it would make me so irritable at times. Okay. That’s enough “boo-hooing” for one day. Suggestions???

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Welcome, @annie0180. Here are the posts that @susanris was referring to, where @beebe talks about histamines and pain with immunotherapy https://connect.mayoclinic.org/comment/1283215/

I also found this article:
- Boost Your Cancer Immunotherapy: How Common Antihistamines May Improve Treatment Success https://morningsidecenter.emory.edu/promising-therapies/blogs/antihistamine.html

How are you doing with getting enough sleep?

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