Long term side effects of Ipi/Yervoy…possible Lupus
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Long term side effects of Ipi/Yervoy…possible Lupus

› Forums › General Melanoma Community › Long term side effects of Ipi/Yervoy…possible Lupus

  • Post
    • December 30, 2014 at 12:27 pm
    Sfern5
    Participant

    My last yervoy treatment was about11 months ago.  About a month ago I developed joint pain, fatigue, and a rash on my wrist that itches and presents like a disc shaped lupus rash.  I believe the ipi my have caused drug induced lupus.  Has anyone else out there developed this sort of reaction?  Any chance it will calm down or go away?

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  • Replies
      • December 30, 2014 at 4:23 pm
      Mat
      Participant

      Don't know the answer to your question, but have you discussed with your onc doing a course of prednisone?

      • December 30, 2014 at 4:23 pm
      Mat
      Participant

      Don't know the answer to your question, but have you discussed with your onc doing a course of prednisone?

        • December 31, 2014 at 2:04 pm
        Sfern5
        Participant

        He's out all week, but talking to his office.  I will see my GP in a day or two and see what his thoughts are.  I actually have been using prednisone for the rash and muscle pain.  Helps some but I never sleep when I take it.  Thanks for the input. I feel kind of helpless.

        • December 31, 2014 at 2:04 pm
        Sfern5
        Participant

        He's out all week, but talking to his office.  I will see my GP in a day or two and see what his thoughts are.  I actually have been using prednisone for the rash and muscle pain.  Helps some but I never sleep when I take it.  Thanks for the input. I feel kind of helpless.

        • December 31, 2014 at 2:04 pm
        Sfern5
        Participant

        He's out all week, but talking to his office.  I will see my GP in a day or two and see what his thoughts are.  I actually have been using prednisone for the rash and muscle pain.  Helps some but I never sleep when I take it.  Thanks for the input. I feel kind of helpless.

      • December 30, 2014 at 4:23 pm
      Mat
      Participant

      Don't know the answer to your question, but have you discussed with your onc doing a course of prednisone?

      • December 31, 2014 at 3:48 am
      Janner
      Participant

      I really haven't seen anyone post about getting Lupus after Yervoy.  I have, however, seen people with melanoma develop auto immune diseases (including Lupus) as well as others who already had auto immune disease develop melanoma.  (Not all had systemic treatment of any type).  There seems to be a higher risk of developing melanoma with auto immune issues.  In fact, one drug that treats Lupus has been implicated with a high risk of developing melanoma.  I had a friend on that drug for Lupus who did develop melanoma.  Since Yervoy does affect the auto immune system, I don't think it's a complete stretch to think messing with the immune system might have other followup issues although it may not be related to specifically the treatment.  Not sure you'd get anyone to admit that direct correlation.  It could be that the same hiccup in your immune system that let a melanoma grow also allowed you to develop Lupus.  Just my thoughts.

      • December 31, 2014 at 3:48 am
      Janner
      Participant

      I really haven't seen anyone post about getting Lupus after Yervoy.  I have, however, seen people with melanoma develop auto immune diseases (including Lupus) as well as others who already had auto immune disease develop melanoma.  (Not all had systemic treatment of any type).  There seems to be a higher risk of developing melanoma with auto immune issues.  In fact, one drug that treats Lupus has been implicated with a high risk of developing melanoma.  I had a friend on that drug for Lupus who did develop melanoma.  Since Yervoy does affect the auto immune system, I don't think it's a complete stretch to think messing with the immune system might have other followup issues although it may not be related to specifically the treatment.  Not sure you'd get anyone to admit that direct correlation.  It could be that the same hiccup in your immune system that let a melanoma grow also allowed you to develop Lupus.  Just my thoughts.

        • December 31, 2014 at 2:08 pm
        Sfern5
        Participant

        It's funny, when you start yervoy they warn you over and over about the risk of it causing new auto immune disorders and now they seem surprised that I appear to be developing one.  I did not know that about the correlation of melanoma with autoimmune diseases.  Thanks for the info!

        • December 31, 2014 at 2:08 pm
        Sfern5
        Participant

        It's funny, when you start yervoy they warn you over and over about the risk of it causing new auto immune disorders and now they seem surprised that I appear to be developing one.  I did not know that about the correlation of melanoma with autoimmune diseases.  Thanks for the info!

        • December 31, 2014 at 4:18 pm
        JC
        Participant

        sorry to hear this, especially after your profile says you were stage I, less than 1mm, 16 years ago. . certainly did not expect this

        • December 31, 2014 at 4:18 pm
        JC
        Participant

        sorry to hear this, especially after your profile says you were stage I, less than 1mm, 16 years ago. . certainly did not expect this

        • December 31, 2014 at 10:26 pm
        Sfern5
        Participant

        Thanks.  I was, but two years ago I was diagnosed with a six cm met blocking my entire right lung.  Zelboraf saved my life.  I have had no reoccurance in my lung or other organs, but I have had three subcutaneous tumors removed from my ribcage that appear to have been seeded from a lung biopsy drainage tube.  Those are why we proceeded to the yervoy.  I'm lucky to be here at all.  Just wishing I felt a little better right now.  On the whole I'm doing great!

        • December 31, 2014 at 10:26 pm
        Sfern5
        Participant

        Thanks.  I was, but two years ago I was diagnosed with a six cm met blocking my entire right lung.  Zelboraf saved my life.  I have had no reoccurance in my lung or other organs, but I have had three subcutaneous tumors removed from my ribcage that appear to have been seeded from a lung biopsy drainage tube.  Those are why we proceeded to the yervoy.  I'm lucky to be here at all.  Just wishing I felt a little better right now.  On the whole I'm doing great!

        • December 31, 2014 at 10:26 pm
        Sfern5
        Participant

        Thanks.  I was, but two years ago I was diagnosed with a six cm met blocking my entire right lung.  Zelboraf saved my life.  I have had no reoccurance in my lung or other organs, but I have had three subcutaneous tumors removed from my ribcage that appear to have been seeded from a lung biopsy drainage tube.  Those are why we proceeded to the yervoy.  I'm lucky to be here at all.  Just wishing I felt a little better right now.  On the whole I'm doing great!

        • December 31, 2014 at 10:26 pm
        Sfern5
        Participant

        Thanks.  I was, but two years ago I was diagnosed with a six cm met blocking my entire right lung.  Zelboraf saved my life.  I have had no reoccurance in my lung or other organs, but I have had three subcutaneous tumors removed from my ribcage that appear to have been seeded from a lung biopsy drainage tube.  Those are why we proceeded to the yervoy.  I'm lucky to be here at all.  Just wishing I felt a little better right now.  On the whole I'm doing great!

        • December 31, 2014 at 10:26 pm
        Sfern5
        Participant

        Thanks.  I was, but two years ago I was diagnosed with a six cm met blocking my entire right lung.  Zelboraf saved my life.  I have had no reoccurance in my lung or other organs, but I have had three subcutaneous tumors removed from my ribcage that appear to have been seeded from a lung biopsy drainage tube.  Those are why we proceeded to the yervoy.  I'm lucky to be here at all.  Just wishing I felt a little better right now.  On the whole I'm doing great!

        • December 31, 2014 at 10:26 pm
        Sfern5
        Participant

        Thanks.  I was, but two years ago I was diagnosed with a six cm met blocking my entire right lung.  Zelboraf saved my life.  I have had no reoccurance in my lung or other organs, but I have had three subcutaneous tumors removed from my ribcage that appear to have been seeded from a lung biopsy drainage tube.  Those are why we proceeded to the yervoy.  I'm lucky to be here at all.  Just wishing I felt a little better right now.  On the whole I'm doing great!

        • December 31, 2014 at 4:18 pm
        JC
        Participant

        sorry to hear this, especially after your profile says you were stage I, less than 1mm, 16 years ago. . certainly did not expect this

        • December 31, 2014 at 2:08 pm
        Sfern5
        Participant

        It's funny, when you start yervoy they warn you over and over about the risk of it causing new auto immune disorders and now they seem surprised that I appear to be developing one.  I did not know that about the correlation of melanoma with autoimmune diseases.  Thanks for the info!

      • December 31, 2014 at 3:48 am
      Janner
      Participant

      I really haven't seen anyone post about getting Lupus after Yervoy.  I have, however, seen people with melanoma develop auto immune diseases (including Lupus) as well as others who already had auto immune disease develop melanoma.  (Not all had systemic treatment of any type).  There seems to be a higher risk of developing melanoma with auto immune issues.  In fact, one drug that treats Lupus has been implicated with a high risk of developing melanoma.  I had a friend on that drug for Lupus who did develop melanoma.  Since Yervoy does affect the auto immune system, I don't think it's a complete stretch to think messing with the immune system might have other followup issues although it may not be related to specifically the treatment.  Not sure you'd get anyone to admit that direct correlation.  It could be that the same hiccup in your immune system that let a melanoma grow also allowed you to develop Lupus.  Just my thoughts.

      • January 7, 2015 at 4:01 pm
      Sfern5
      Participant

      Well, blood work was positive.  With that and my symptoms, I have now been diagnosed with lupus.  I sure hope the ipi is doing something to hold off the melanoma.  That would make the lupus worth it, I guess.  🙁

      • January 7, 2015 at 4:01 pm
      Sfern5
      Participant

      Well, blood work was positive.  With that and my symptoms, I have now been diagnosed with lupus.  I sure hope the ipi is doing something to hold off the melanoma.  That would make the lupus worth it, I guess.  🙁

        • January 7, 2015 at 9:39 pm
        DZnDef
        Participant

        Well that's certainly a drag!  Wow!  Like dealing with cancer isn't bad enough?!  Very sorry for this additional burden on your health.  But yes, let's hope that this means the cancer is all taken care of.  It's the least your immune system could do for you before going on the attack against your healthy cells.

        • January 7, 2015 at 9:39 pm
        DZnDef
        Participant

        Well that's certainly a drag!  Wow!  Like dealing with cancer isn't bad enough?!  Very sorry for this additional burden on your health.  But yes, let's hope that this means the cancer is all taken care of.  It's the least your immune system could do for you before going on the attack against your healthy cells.

        • January 14, 2015 at 3:51 am
        Sfern5
        Participant

        Thanks, Maggie!  It is a drag, but I'm taking prednisone and have the symptoms under control for the moment.  Certainly could be much worse.   And my lungs have been clear of mets for two years!  So, I'm done complaining.

        • January 14, 2015 at 3:51 am
        Sfern5
        Participant

        Thanks, Maggie!  It is a drag, but I'm taking prednisone and have the symptoms under control for the moment.  Certainly could be much worse.   And my lungs have been clear of mets for two years!  So, I'm done complaining.

        • January 14, 2015 at 3:51 am
        Sfern5
        Participant

        Thanks, Maggie!  It is a drag, but I'm taking prednisone and have the symptoms under control for the moment.  Certainly could be much worse.   And my lungs have been clear of mets for two years!  So, I'm done complaining.

        • January 7, 2015 at 9:39 pm
        DZnDef
        Participant

        Well that's certainly a drag!  Wow!  Like dealing with cancer isn't bad enough?!  Very sorry for this additional burden on your health.  But yes, let's hope that this means the cancer is all taken care of.  It's the least your immune system could do for you before going on the attack against your healthy cells.

      • January 7, 2015 at 4:01 pm
      Sfern5
      Participant

      Well, blood work was positive.  With that and my symptoms, I have now been diagnosed with lupus.  I sure hope the ipi is doing something to hold off the melanoma.  That would make the lupus worth it, I guess.  🙁

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