MRF-Logo2019-Horizontal-RGB
Long term side effects of Ipi/Yervoy…possible Lupus
REGISTER
The information on this site is not intended or implied to be a substitute for professional medical advice, diagnosis or treatment. Content within the patient forum is user-generated and has not been reviewed by medical professionals. Other sections of the Melanoma Research Foundation website include information that has been reviewed by medical professionals as appropriate. All medical decisions should be made in consultation with your doctor or other qualified medical professional.

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?

    Viewing 8 reply threads
    • 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.  🙁

                                                                Viewing 8 reply threads
                                                                • You must be logged in to reply to this topic.
                                                                About the MRF Patient Forum

                                                                The MRF Patient Forum is the oldest and largest online community of people affected by melanoma. It is designed to provide peer support and information to caregivers, patients, family and friends. There is no better place to discuss different parts of your journey with this cancer and find the friends and support resources to make that journey more bearable.

                                                                The information on the forum is open and accessible to everyone. To add a new topic or to post a reply, you must be a registered user. Please note that you will be able to post both topics and replies anonymously even though you are logged in. All posts must abide by MRF posting policies.

                                                                Popular Topics