› Forums › General Melanoma Community › Keytruda side effects?
- This topic has 12 replies, 3 voices, and was last updated 8 years, 7 months ago by
davekarrie.
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- September 26, 2015 at 10:49 am
Hi all
Just an update on my progress. I had to stop keytruda on August 7 after 11 months and stable and reduced tumour in my lung. I have terrible arthritic/myalgic type pain pretty much paralyzing me in the mornings. It takes a few hours to be able to get out of bed. I am on steroids and now oxycodone for it. But this week I saw a rheumatologist who is a scientist and teacher as well at several universities and I was impressed with his dismissal of my presumption that the pain is due to keytruda. He has sent me for a million new blood tests bone scans and spine mris. He is counting everything out one by one and I hope he can get to the bottom of it. I just wanted to let you all know, as I am the only one I have come across with this so it may be interesting for you or someone in the future if he finds that the cause is the immunotherapy, even if it has somehow triggered genetic rheumatoid arthritis which my mother had at a much older age (I am 58). The doctor is a specialist in women with breast cancer who ended up with arthritic disease symptoms from their treatment
anne-Louise
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- September 26, 2015 at 2:26 pm
Hey Anne-Louise,
Though many of us have problems with arthralgias on anti-PD1, you certainly have endured ever so much!!! I am glad your doc is looking into all the possible causes!!! Here is a link about arthritis on anti-PD1 I posted last year, though I fear it brings up more questions than answers: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/11/arthritis-associated-with-anti-pd1.html
Have you tried remicaid (inflixamab)? At first, folks thought treating side effects with prednisone and meds like inflixamab was a big no, no. Since then researchers have learned that treating sooner rather than late is actually better, and even when these drugs are necessary they do NOT impede a positive response to melanoma.
It is interesting to note that the patients in the article developed their significant arthralgias many months into their therapies. Another thing we have been learning. Side effects to immunotherapy can be cumulative, especially in regard to fatigue and arthralgias. Here is a post I put together with a link to a webinar by Weber and Agarwala and that addressses these points and others regarding side effects to both immuno and targeted therapies. From the horses mouths…..
Good luck with your work-up. I hope you find some relief soon!! Celeste
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- September 26, 2015 at 4:25 pm
Best of luck to you. I am about 1 month into Keytruda and have had 2 doses. I had pretty bad joing pain and especially my right shoulder after the first infusion. It has seemed to get better, so don't know if my body is adjusting? Hope you can find some answers, best of luck! Dave
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- September 26, 2015 at 4:25 pm
Best of luck to you. I am about 1 month into Keytruda and have had 2 doses. I had pretty bad joing pain and especially my right shoulder after the first infusion. It has seemed to get better, so don't know if my body is adjusting? Hope you can find some answers, best of luck! Dave
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- September 26, 2015 at 4:25 pm
Best of luck to you. I am about 1 month into Keytruda and have had 2 doses. I had pretty bad joing pain and especially my right shoulder after the first infusion. It has seemed to get better, so don't know if my body is adjusting? Hope you can find some answers, best of luck! Dave
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- September 26, 2015 at 2:26 pm
Hey Anne-Louise,
Though many of us have problems with arthralgias on anti-PD1, you certainly have endured ever so much!!! I am glad your doc is looking into all the possible causes!!! Here is a link about arthritis on anti-PD1 I posted last year, though I fear it brings up more questions than answers: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/11/arthritis-associated-with-anti-pd1.html
Have you tried remicaid (inflixamab)? At first, folks thought treating side effects with prednisone and meds like inflixamab was a big no, no. Since then researchers have learned that treating sooner rather than late is actually better, and even when these drugs are necessary they do NOT impede a positive response to melanoma.
It is interesting to note that the patients in the article developed their significant arthralgias many months into their therapies. Another thing we have been learning. Side effects to immunotherapy can be cumulative, especially in regard to fatigue and arthralgias. Here is a post I put together with a link to a webinar by Weber and Agarwala and that addressses these points and others regarding side effects to both immuno and targeted therapies. From the horses mouths…..
Good luck with your work-up. I hope you find some relief soon!! Celeste
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- September 26, 2015 at 2:26 pm
Hey Anne-Louise,
Though many of us have problems with arthralgias on anti-PD1, you certainly have endured ever so much!!! I am glad your doc is looking into all the possible causes!!! Here is a link about arthritis on anti-PD1 I posted last year, though I fear it brings up more questions than answers: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/11/arthritis-associated-with-anti-pd1.html
Have you tried remicaid (inflixamab)? At first, folks thought treating side effects with prednisone and meds like inflixamab was a big no, no. Since then researchers have learned that treating sooner rather than late is actually better, and even when these drugs are necessary they do NOT impede a positive response to melanoma.
It is interesting to note that the patients in the article developed their significant arthralgias many months into their therapies. Another thing we have been learning. Side effects to immunotherapy can be cumulative, especially in regard to fatigue and arthralgias. Here is a post I put together with a link to a webinar by Weber and Agarwala and that addressses these points and others regarding side effects to both immuno and targeted therapies. From the horses mouths…..
Good luck with your work-up. I hope you find some relief soon!! Celeste
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