Anyone experienced severe lower back pain after keytruda?
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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@ladylennie I'm sorry you're in so much pain. If it was me, I would go to the emergency department because they can at least consult with the on call oncologist, if not your own doctor, and run any needed tests. You might have developed a secondary infection which would be important to treat as soon as possible. Ketruda can also cause kidney issues which should be ruled out. I hope you get the care you need and feel better quickly.
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2 ReactionsThank you. My oncologist put me on 30 mgs prednisone for one week, tapering by 5 mg each future week. If it doesn't work over the weekend I'll go to the er altho they can't do an mri because I had an iron infusion 2 weeks ago.
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2 Reactions@ladylennie, Ouch, that sounds miserable. Has the pain subsided at all? Were you able to have the PET scan, or a CT to see if anything is out of alignment?
I started prednisone and the pain subsided within 6 hours. I also has my inflammatory markers, crp and esr chrcked. My crp was 87 ( normal is less than 8) and esr was 68 ( normal less than 30). So now the problem is to figure out what the massive inflammation is from. When rechecked, crp was down to 14 and esr normal. My pet-ct was good. Nothing showed up.
And to add to that, I'm anemic. I had an iron infusion last month and my iron is normal. But I'm still anemic. Again, no idea why. I'm seeing a rheumatologist Thursday.
The frustration is that I finished all treatment in August and this is all new.
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2 Reactions@ladylennie , I'm glad the PET CT looked good! And I hope they keep digging and find the source of the issues. What a mystery. Hugs.
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2 ReactionsUpdate. 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.
@ladylennie , ugh, I’m so sorry that you’re dealing with this level of pain. I’m sure it’s deflating when you just want to get on with your life.
Was your PCP able to help?
I’m not sure if you’ve mentioned this, but do you have access to a Pain Management clinic? Or palliative care through your cancer center? We shouldn’t have to live with this level of pain.
I'm now on 15 mg prednisone. But on hold for anything else because the drs. want to check for temporal arteritis. I had some headaches last week but nothing since then. My next appointment will be with another dr checking for it although I dont have symptoms. In the meantime nothing is being done for my pain and massive inflammation.
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1 ReactionI have been on keytruda since 2021 for Melanoma in my lungs.
I have a history of back problems having had 2 surgeries so several months ago when my lower back started hurting I figured it was from my previous issues.
It got to the point that between my back pain and breathlessness I was really suffering.
I went to my back doctor who ordered scans and he said everything looked good and that my metal equipment was in great shape. He put me on gabapentin which has helped but has some side effects I don't like.
I wish I had more to tell you. I would like to know what they find in your pet scan.
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