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Psoriatic arthritis and Pembro (Keytruda)

Forums Cutaneous Melanoma Community Psoriatic arthritis and Pembro (Keytruda)

  • Post
    sweetaugust
    Participant

    Hi there,

    Just wondering if anyone out there seems to have developed joint pain and rash patches on the skin that could be psoriatic arthritis as a side effect of Pembro (Keytruda)?  I've been on Pembro for almost 4.5 years now for my stage 4 melanoma.  Last year I developed a rash patch on my scalp that itches and burns and joint pain that has never really gone away over the past year.  I'm worried that if I continue on the drug, that the joint pain and arthritis will only get worse and will not be reversible.  Thoughts?

    Have any of you been on Pembro (Keytruda) for this length of time and what are your doctors recommendations for length of remaining on treatment?  What are your side effects this far out?

    Have any of you come off Pembro (Keytruda) and the cancer has returned?

    Thank you so much and all my best,  Laurie

     

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  • Replies
      Casitas1
      Participant
      Hi Laurie, I have autoimmune arthritis due to Pembro. Minus the rash it’s pretty brutal all joints affected and worse in legs. Getting an infusion of Remicade as we speak. Made it through 13 bags before we decided to stop infusions due to inflammation and NED. Been post treatment for 4 months. Dr. said we probly did two bags to many. I can’t imagine 4.5 years! You are amazing! Best,Paul

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      Casitas1
      Participant
      Hi Laurie, I have autoimmune arthritis due to Pembro. Minus the rash it’s pretty brutal all joints affected and worse in legs. Getting an infusion of Remicade as we speak. Made it through 13 bags before we decided to stop infusions due to inflammation and NED. Been post treatment for 4 months. Dr. said we probly did two bags to many. I can’t imagine 4.5 years! You are amazing! Best,Paul

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      Casitas1
      Participant
      Hi Laurie, I have autoimmune arthritis due to Pembro. Minus the rash it’s pretty brutal all joints affected and worse in legs. Getting an infusion of Remicade as we speak. Made it through 13 bags before we decided to stop infusions due to inflammation and NED. Been post treatment for 4 months. Dr. said we probly did two bags to many. I can’t imagine 4.5 years! You are amazing! Best,Paul

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      cancersnewnormal
      Participant

      Wow Laurie…  you have been on Keytruda for a long time! Happy that it seems to be working quite well for you, but sorry about the joint pain and rash. I was on Pembro from Oct 2014 until July 2016, when I stopped infusions due to mild pancreatitis and inflammatory arthritis. "Jubes" also has joint issues from the immunotherapy. My pancreatic enzyme levels returned to normal after stopping infusions, but the joint pain continues. I'm now seeing a rheumatologist, who has me on 500 mg of Sulfasalazine 3 times per day. It took about 5 weeks to kick in, but has been SO MUCH BETTER. I got to the point that sleeping and basic life became a challange. With the sulfasalazine, I'm back to riding my bicycle and living like a normal person again! Are your scans NED? Or are you in the "stable" category?

      An email exchange with one of my former oncologists lead to the discussion of "when to stop" infusions. He mentioned that this is still an uncertain and hot topic of discussion at conferences. However, he also stated that there are doctors now thinking along the lines of 6 months after a patient shows stability or NED. The thought is that this could prevent some of the (ever mounting numbers) long term side effects showing up, and the patient's ability to get back on a regular infusion schedule, should any change of disease status reoccur.

      Thus far, my team of docs and I are hoping that this inflammatory arthritis will be temporary, and we will be able to eliminate the need for Sulfasalazine at some point in the near future. My last Pembro infusion was July 5, 2016….. and so far… (knock on wood)… my body CT's and brain MRI's have come back clean.

      There is another somewhat recent post here on the forum regarding inflammatory joint pain. An article with some interesting information. If you dig a few pages into the forum here, it shouldn't be too difficult to find again. Additionally… I came across this pub med paper when researching the issue for my own troubles: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5051426/

      You can probably remain on Pembro, but get some treatment for the joint pain as well…… something to discuss with your oncologist. 

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        cancersnewnormal
        Participant

        I found the article posted previously here on the forum…. Page 4… thank you to Debwray! Here is the link: http://www.futuremedicine.com/doi/full/10.2217/imt-2016-0117?src=recsys

         

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        debwray
        Participant

        Hi… If you follow the link above then there are articles referenced on psoriatic arthritis and nivo..try from number 15 etc. Article is Jan 2017 so refs are pretty up to date.

        Good luck

        Deb

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        debwray
        Participant

        Hi… If you follow the link above then there are articles referenced on psoriatic arthritis and nivo..try from number 15 etc. Article is Jan 2017 so refs are pretty up to date.

        Good luck

        Deb

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        debwray
        Participant

        Hi… If you follow the link above then there are articles referenced on psoriatic arthritis and nivo..try from number 15 etc. Article is Jan 2017 so refs are pretty up to date.

        Good luck

        Deb

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        cancersnewnormal
        Participant

        I found the article posted previously here on the forum…. Page 4… thank you to Debwray! Here is the link: http://www.futuremedicine.com/doi/full/10.2217/imt-2016-0117?src=recsys

         

        Loading spinner
        cancersnewnormal
        Participant

        I found the article posted previously here on the forum…. Page 4… thank you to Debwray! Here is the link: http://www.futuremedicine.com/doi/full/10.2217/imt-2016-0117?src=recsys

         

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        sweetaugust
        Participant

        Thanks Niki!  I appreciate the articles.  I've been stable since December 2013. And I keep hearing that lots of doctors are thinking 6 months after being stable is a good amount.  So I talked to my doctors about it and they just don't want to take chances because the drug is so new.  And I had been told a couple years ago that if I came off the drug, that the melanoma should never grow back…as the body had been re-trained.  So I mentioned that a few months ago to my doctors, that if I came off isn't my body re-trained and I should be fine…and they said it's just too soon to tell.  I just don't want to go too far and just let the side effects mount up until I am then forced into taking more drugs to counter the effects.  

        Thank you so much for the help.  Have a great night,

        Laurie

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        cancersnewnormal
        Participant

        I don't blame you for questioning coming off the meds. While I don't want to die from melanoma, I don't want an autoimmune disease caused by the drugs to kill or mame me either!

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        sweetaugust
        Participant

        Exactly how I feel Niki!!!  Exactly!  :)

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        sweetaugust
        Participant

        Exactly how I feel Niki!!!  Exactly!  :)

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        sweetaugust
        Participant

        Exactly how I feel Niki!!!  Exactly!  :)

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        cancersnewnormal
        Participant

        I don't blame you for questioning coming off the meds. While I don't want to die from melanoma, I don't want an autoimmune disease caused by the drugs to kill or mame me either!

        Loading spinner
        cancersnewnormal
        Participant

        I don't blame you for questioning coming off the meds. While I don't want to die from melanoma, I don't want an autoimmune disease caused by the drugs to kill or mame me either!

        Loading spinner
        sweetaugust
        Participant

        Thanks Niki!  I appreciate the articles.  I've been stable since December 2013. And I keep hearing that lots of doctors are thinking 6 months after being stable is a good amount.  So I talked to my doctors about it and they just don't want to take chances because the drug is so new.  And I had been told a couple years ago that if I came off the drug, that the melanoma should never grow back…as the body had been re-trained.  So I mentioned that a few months ago to my doctors, that if I came off isn't my body re-trained and I should be fine…and they said it's just too soon to tell.  I just don't want to go too far and just let the side effects mount up until I am then forced into taking more drugs to counter the effects.  

        Thank you so much for the help.  Have a great night,

        Laurie

        Loading spinner
        sweetaugust
        Participant

        Thanks Niki!  I appreciate the articles.  I've been stable since December 2013. And I keep hearing that lots of doctors are thinking 6 months after being stable is a good amount.  So I talked to my doctors about it and they just don't want to take chances because the drug is so new.  And I had been told a couple years ago that if I came off the drug, that the melanoma should never grow back…as the body had been re-trained.  So I mentioned that a few months ago to my doctors, that if I came off isn't my body re-trained and I should be fine…and they said it's just too soon to tell.  I just don't want to go too far and just let the side effects mount up until I am then forced into taking more drugs to counter the effects.  

        Thank you so much for the help.  Have a great night,

        Laurie

        Loading spinner
      cancersnewnormal
      Participant

      Wow Laurie…  you have been on Keytruda for a long time! Happy that it seems to be working quite well for you, but sorry about the joint pain and rash. I was on Pembro from Oct 2014 until July 2016, when I stopped infusions due to mild pancreatitis and inflammatory arthritis. "Jubes" also has joint issues from the immunotherapy. My pancreatic enzyme levels returned to normal after stopping infusions, but the joint pain continues. I'm now seeing a rheumatologist, who has me on 500 mg of Sulfasalazine 3 times per day. It took about 5 weeks to kick in, but has been SO MUCH BETTER. I got to the point that sleeping and basic life became a challange. With the sulfasalazine, I'm back to riding my bicycle and living like a normal person again! Are your scans NED? Or are you in the "stable" category?

      An email exchange with one of my former oncologists lead to the discussion of "when to stop" infusions. He mentioned that this is still an uncertain and hot topic of discussion at conferences. However, he also stated that there are doctors now thinking along the lines of 6 months after a patient shows stability or NED. The thought is that this could prevent some of the (ever mounting numbers) long term side effects showing up, and the patient's ability to get back on a regular infusion schedule, should any change of disease status reoccur.

      Thus far, my team of docs and I are hoping that this inflammatory arthritis will be temporary, and we will be able to eliminate the need for Sulfasalazine at some point in the near future. My last Pembro infusion was July 5, 2016….. and so far… (knock on wood)… my body CT's and brain MRI's have come back clean.

      There is another somewhat recent post here on the forum regarding inflammatory joint pain. An article with some interesting information. If you dig a few pages into the forum here, it shouldn't be too difficult to find again. Additionally… I came across this pub med paper when researching the issue for my own troubles: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5051426/

      You can probably remain on Pembro, but get some treatment for the joint pain as well…… something to discuss with your oncologist. 

      Loading spinner
      cancersnewnormal
      Participant

      Wow Laurie…  you have been on Keytruda for a long time! Happy that it seems to be working quite well for you, but sorry about the joint pain and rash. I was on Pembro from Oct 2014 until July 2016, when I stopped infusions due to mild pancreatitis and inflammatory arthritis. "Jubes" also has joint issues from the immunotherapy. My pancreatic enzyme levels returned to normal after stopping infusions, but the joint pain continues. I'm now seeing a rheumatologist, who has me on 500 mg of Sulfasalazine 3 times per day. It took about 5 weeks to kick in, but has been SO MUCH BETTER. I got to the point that sleeping and basic life became a challange. With the sulfasalazine, I'm back to riding my bicycle and living like a normal person again! Are your scans NED? Or are you in the "stable" category?

      An email exchange with one of my former oncologists lead to the discussion of "when to stop" infusions. He mentioned that this is still an uncertain and hot topic of discussion at conferences. However, he also stated that there are doctors now thinking along the lines of 6 months after a patient shows stability or NED. The thought is that this could prevent some of the (ever mounting numbers) long term side effects showing up, and the patient's ability to get back on a regular infusion schedule, should any change of disease status reoccur.

      Thus far, my team of docs and I are hoping that this inflammatory arthritis will be temporary, and we will be able to eliminate the need for Sulfasalazine at some point in the near future. My last Pembro infusion was July 5, 2016….. and so far… (knock on wood)… my body CT's and brain MRI's have come back clean.

      There is another somewhat recent post here on the forum regarding inflammatory joint pain. An article with some interesting information. If you dig a few pages into the forum here, it shouldn't be too difficult to find again. Additionally… I came across this pub med paper when researching the issue for my own troubles: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5051426/

      You can probably remain on Pembro, but get some treatment for the joint pain as well…… something to discuss with your oncologist. 

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      Twhite00000
      Participant

      I know this is an older post, I hope you are doing well.  I think IA or PsA are under reported side effects of Keytruda and other immunotherapies.  I was only able to remain on Keytruda for less than 3 months before excruciating neck pain and then all joints, and muscle weakness.  I had to go on high dose prednisone for two months then it took another 6 months to wean off.   Now three years later I have psoriasis in my ears it is like an itch you cannot scratch but luckily it comes and goes, and my knees are weak and painful and the prednisone increased my weight A LOT, and I still have not been able to lose weight, I am likely the fattest stage 4 cancer patient in history LOL.   So, yes I believe join pain and muscle pain are caused by Keytruda but for many the alternative is worse.  My story is not all bad though, my PET scan back in Nov '18 came back NED, and I am off all treatment and just need regular scans for observation.

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