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Anyone experienced severe lower back pain after keytruda?

Posted by ladylennie @ladylennie, Oct 24, 2025

I finished one year of keytruda in August. Starting in September my knees swelled and we're painful. Then about 10 days ago my lower back became excruciatingly painful. My inflammatory markers are extremely high- ers 68, crp 86.6. The pain is awful. Tramadol helps a little but also makes me nauseous. My doctor ordered a pet scan for Wednesday but in the meantime I can't function. I'm thinking of the emergency room but can't imagine what they can do. Any suggestions?

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Lisa, Volunteer Mentor | @lls8000 | Feb 2 5:52pm
In reply to @ladylennie "Latest news. I started actemra for inflammatory arthritis. Im tapering off prednisone and now at 12.5..." + (show)
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Latest news. I started actemra for inflammatory arthritis. Im tapering off prednisone and now at 12.5 mg. No pain at all for the past month. Im hoping for a quicker taper. Also, the rheumatologist is syltill worried about giant cell arteritis (gca). I have absolutely no symptoms except my age. And that i had 3 m8graines in a row 2 months ago. I get occasional migraines, so the only possibly unusual thing was 3 of them. None since. Im pretty positive I don't have gca. It's inflammatory arthritis.

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@ladylennie , Thanks or the update! A favorite quote from an expert lung oncologist, "the major side effect of successful lung cancer treatment is getting older". Picking up other ailments, even autoimmune based ones, only happens because we're still alive. I hope the actemra is effective, and the headaches stay away.

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ladylennie | @ladylennie | Feb 3 9:45am

I just got dr approval of quicker prednisone taper. One week each at 10, 7.5, 5, 2.5 mg and then off. Of course that assumes no return of pain, but I'm hopeful.

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songinmyheart54 | @songinmyheart54 | Feb 5 10:15am

I have been on keytruda since 2021 and last year I started having excruciating lower back pain. I am unable to function. I also am breathless whenever I move around. As soon as I sit I am just fine so between breathlessness and severe back pain I can hardly stand it.
My back doctor says it's arthritis from back surgery. I dont agree with it.

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songinmyheart54 | @songinmyheart54 | Feb 5 10:22am
In reply to @ladylennie "Update. I finished my taper last week but already knew it didn't work. Pain started again..." + (show)
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Update. I finished my taper last week but already knew it didn't work. Pain started again at 5 mg prednisone. My crp was 167 and esr 79. So I started back at 10 mg. It works during the day but wears off at night. The pain at night and early am is excruciating; knees, ankles, elbows and back. In am I take a tramadol and the prednisone. I plan to contact my primary today to find out what increased dose of prednisone I should be on. I should also be on a disease modifying anti rheumatic drugs (dmard) like methotrexate but can't find a rheumatologist. Has anyone been through this? Does it ever get better?

Its so hard to accept that i came through surgery, chemo and immunotherapy fine just to have this happen 2 months after I finished keytruda and all other treatment with clear scans.

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@ladylennie damaged caused by keytruda can go on for months afterwards

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songinmyheart54 | @songinmyheart54 | Feb 5 10:28am
In reply to @ladylennie "Latest news. I started actemra for inflammatory arthritis. Im tapering off prednisone and now at 12.5..." + (show)
Profile picture for ladylennie @ladylennie

Latest news. I started actemra for inflammatory arthritis. Im tapering off prednisone and now at 12.5 mg. No pain at all for the past month. Im hoping for a quicker taper. Also, the rheumatologist is syltill worried about giant cell arteritis (gca). I have absolutely no symptoms except my age. And that i had 3 m8graines in a row 2 months ago. I get occasional migraines, so the only possibly unusual thing was 3 of them. None since. Im pretty positive I don't have gca. It's inflammatory arthritis.

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@ladylennie how is the new medication helping you?

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ladylennie | @ladylennie | Feb 5 10:50am
In reply to @songinmyheart54 "@ladylennie how is the new medication helping you?" + (show)
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@ladylennie how is the new medication helping you?

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@songinmyheart54
No pain after 1 infusion. I'm tapering prednisone 2.5 mg each week. Now at 10 mg. Last time I tried to taper i had a lot of pain at 10 mg so I'm hopeful.

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