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Arthritis after multiple immunotherapy treatments
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Arthritis after multiple immunotherapy treatments

› Forums › General Melanoma Community › Arthritis after multiple immunotherapy treatments

  • Post
    • January 29, 2016 at 7:13 am
    MaryD
    Participant

      I am fortunate to be long term Stage IV survivor (7 years since last recurrence) and over a period of 8 years, did multiple treatments (INF, vaccine trial, Ipi, pulsed IL-2).

      While I'm certainly not getting any younger (61), I've really noticed more joint pain and osteoarthritis in my feet and hands.    A lot of this seemed to come on  after the pulsed IL-2 treatment but it may well be the result of cumulative treatments over time.  

      I was wondering if anyone else has experienced this after doing multiple immunotherapy treatments.  

      Thank you,

      Mary

    Viewing 5 reply threads
    • Replies
        • January 29, 2016 at 5:31 pm
        Scooby123
        Participant

          Hi MaryD

          first of all I would like to say congrats for 7 years Ned. Did you have any arthuritus before treatments started. I have oestoarthritus for 20 years am 48 years old. I am stage 4 liver ,lungs  tumours had ippi treatment and my arthuritus has been a bit more painful since completing treatment but also winter does not help either. The reason I asked if you have it before  then  it could have just got worse over time not been awful but hope you do not mind me saying could it be we are not getting any younger. Speak to your GP and see what they say differnt meds might help . 

          Good luck take care

          scooby123❤️

            • January 31, 2016 at 10:52 pm
            MaryD
            Participant

              No ,  I had no joint pain or obvious arthritis before treatments but my Mom did have Heberdon's nodes on her fingers so I could certainly have inherited those. 

              It was interesting – during the pulsed IL-2, I noticed the skin on my hands suddenly looked shriveled – like they aged 20 years!   It eventuallly improved after treatment but asked one of my physicians, Dr. Jeffrey Weber about it.    I thought it might be dehydration but he said it was due to inflammation – and that it can last a long time. 

              No doubt the arthritis is due to a confluence of factors – inheritance, treatments, normal aging etc.

              But, as we know too well, way better than the alternative!

              Mary

               

              • February 6, 2016 at 2:57 pm
              mms7angels1
              Participant

                Hi Mary

                You go girl, awesome woman you are. I'm 57, in last 8 years have also had INF, IL-2, radiation to lungs, arm, brain and the last 6 months on Nivo. My arthritis in my AC joints, hands, feet, knees is worse in the last 6 months. It shows on scans, mris, and pain relievers don't help. I try to walk a couple of miles every day, take epsom salt baths and pay attention to the shoes I wear as I need support for the mid-sole in addition my high arches. Started Osteo Bi-flex (glucosamin and chondroitin) supplements to see if that may help. BTW, Dr. Weber is a great guy. I've been under the care of Dr. Sharfman at JHU and he's been so great to me and for me.  

                I wish you all the best Mary, keep on living!

                Maureen

                • February 6, 2016 at 2:57 pm
                mms7angels1
                Participant

                  Hi Mary

                  You go girl, awesome woman you are. I'm 57, in last 8 years have also had INF, IL-2, radiation to lungs, arm, brain and the last 6 months on Nivo. My arthritis in my AC joints, hands, feet, knees is worse in the last 6 months. It shows on scans, mris, and pain relievers don't help. I try to walk a couple of miles every day, take epsom salt baths and pay attention to the shoes I wear as I need support for the mid-sole in addition my high arches. Started Osteo Bi-flex (glucosamin and chondroitin) supplements to see if that may help. BTW, Dr. Weber is a great guy. I've been under the care of Dr. Sharfman at JHU and he's been so great to me and for me.  

                  I wish you all the best Mary, keep on living!

                  Maureen

                  • February 6, 2016 at 2:57 pm
                  mms7angels1
                  Participant

                    Hi Mary

                    You go girl, awesome woman you are. I'm 57, in last 8 years have also had INF, IL-2, radiation to lungs, arm, brain and the last 6 months on Nivo. My arthritis in my AC joints, hands, feet, knees is worse in the last 6 months. It shows on scans, mris, and pain relievers don't help. I try to walk a couple of miles every day, take epsom salt baths and pay attention to the shoes I wear as I need support for the mid-sole in addition my high arches. Started Osteo Bi-flex (glucosamin and chondroitin) supplements to see if that may help. BTW, Dr. Weber is a great guy. I've been under the care of Dr. Sharfman at JHU and he's been so great to me and for me.  

                    I wish you all the best Mary, keep on living!

                    Maureen

                    • January 31, 2016 at 10:52 pm
                    MaryD
                    Participant

                      No ,  I had no joint pain or obvious arthritis before treatments but my Mom did have Heberdon's nodes on her fingers so I could certainly have inherited those. 

                      It was interesting – during the pulsed IL-2, I noticed the skin on my hands suddenly looked shriveled – like they aged 20 years!   It eventuallly improved after treatment but asked one of my physicians, Dr. Jeffrey Weber about it.    I thought it might be dehydration but he said it was due to inflammation – and that it can last a long time. 

                      No doubt the arthritis is due to a confluence of factors – inheritance, treatments, normal aging etc.

                      But, as we know too well, way better than the alternative!

                      Mary

                       

                      • January 31, 2016 at 10:52 pm
                      MaryD
                      Participant

                        No ,  I had no joint pain or obvious arthritis before treatments but my Mom did have Heberdon's nodes on her fingers so I could certainly have inherited those. 

                        It was interesting – during the pulsed IL-2, I noticed the skin on my hands suddenly looked shriveled – like they aged 20 years!   It eventuallly improved after treatment but asked one of my physicians, Dr. Jeffrey Weber about it.    I thought it might be dehydration but he said it was due to inflammation – and that it can last a long time. 

                        No doubt the arthritis is due to a confluence of factors – inheritance, treatments, normal aging etc.

                        But, as we know too well, way better than the alternative!

                        Mary

                         

                      • January 29, 2016 at 5:31 pm
                      Scooby123
                      Participant

                        Hi MaryD

                        first of all I would like to say congrats for 7 years Ned. Did you have any arthuritus before treatments started. I have oestoarthritus for 20 years am 48 years old. I am stage 4 liver ,lungs  tumours had ippi treatment and my arthuritus has been a bit more painful since completing treatment but also winter does not help either. The reason I asked if you have it before  then  it could have just got worse over time not been awful but hope you do not mind me saying could it be we are not getting any younger. Speak to your GP and see what they say differnt meds might help . 

                        Good luck take care

                        scooby123❤️

                        • January 29, 2016 at 5:31 pm
                        Scooby123
                        Participant

                          Hi MaryD

                          first of all I would like to say congrats for 7 years Ned. Did you have any arthuritus before treatments started. I have oestoarthritus for 20 years am 48 years old. I am stage 4 liver ,lungs  tumours had ippi treatment and my arthuritus has been a bit more painful since completing treatment but also winter does not help either. The reason I asked if you have it before  then  it could have just got worse over time not been awful but hope you do not mind me saying could it be we are not getting any younger. Speak to your GP and see what they say differnt meds might help . 

                          Good luck take care

                          scooby123❤️

                          • January 31, 2016 at 9:56 pm
                          Bubbles
                          Participant

                            Hi Mary,

                            Lots of folks experience arthralgias while on various immunotherapies. Jubes (a commentor on this forum) dealt with rather extreme problems (you can search for her comments).  While I do think the effects of all immunotherapies are cummulative (something researchers contradicted that at first…but are coming around to it more and more) meaning…at first the side effects (whatever they may be) are mild…but worsen as we take more of the med.  However, for most, the side effects, including arthralgias, improve over time off the medication.  Treatment is generally as expected for arthritis/arthralgias…whatever the cause.

                            Here's a link to an article about folks who developed arthritis on anti-PD1:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/11/arthritis-associated-with-anti-pd1.html

                            Here's a link to researchers discussing side effects and their management generally….including arthralgias:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/09/side-effects-and-how-to-manage-them-in.html

                            And as the other commentor noted…congrats on 7 years without recurrence!  No small thing indeed.  And…it is true….none of us are getting any younger…but it sure beats the alternative.  Talk to your doc about your symptoms and past history.  Hopefully you can find some relief.  Celeste

                             

                              • January 31, 2016 at 11:05 pm
                              MaryD
                              Participant

                                Thanks for the feedback Celeste – yes, to be sure , it is way better than the alternative!   I suspect it is a combination of all the factors coming together.   Taking NSAIDs with minimal success and will be having mid foot fusion in the near future.   

                                The very bright side of my journey is that I can give hope to others fighting this disease – there are more and more long term survivors out there 🙂

                                Mary

                                • January 31, 2016 at 11:05 pm
                                MaryD
                                Participant

                                  Thanks for the feedback Celeste – yes, to be sure , it is way better than the alternative!   I suspect it is a combination of all the factors coming together.   Taking NSAIDs with minimal success and will be having mid foot fusion in the near future.   

                                  The very bright side of my journey is that I can give hope to others fighting this disease – there are more and more long term survivors out there 🙂

                                  Mary

                                  • January 31, 2016 at 11:05 pm
                                  MaryD
                                  Participant

                                    Thanks for the feedback Celeste – yes, to be sure , it is way better than the alternative!   I suspect it is a combination of all the factors coming together.   Taking NSAIDs with minimal success and will be having mid foot fusion in the near future.   

                                    The very bright side of my journey is that I can give hope to others fighting this disease – there are more and more long term survivors out there 🙂

                                    Mary

                                  • January 31, 2016 at 9:56 pm
                                  Bubbles
                                  Participant

                                    Hi Mary,

                                    Lots of folks experience arthralgias while on various immunotherapies. Jubes (a commentor on this forum) dealt with rather extreme problems (you can search for her comments).  While I do think the effects of all immunotherapies are cummulative (something researchers contradicted that at first…but are coming around to it more and more) meaning…at first the side effects (whatever they may be) are mild…but worsen as we take more of the med.  However, for most, the side effects, including arthralgias, improve over time off the medication.  Treatment is generally as expected for arthritis/arthralgias…whatever the cause.

                                    Here's a link to an article about folks who developed arthritis on anti-PD1:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/11/arthritis-associated-with-anti-pd1.html

                                    Here's a link to researchers discussing side effects and their management generally….including arthralgias:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/09/side-effects-and-how-to-manage-them-in.html

                                    And as the other commentor noted…congrats on 7 years without recurrence!  No small thing indeed.  And…it is true….none of us are getting any younger…but it sure beats the alternative.  Talk to your doc about your symptoms and past history.  Hopefully you can find some relief.  Celeste

                                     

                                    • January 31, 2016 at 9:56 pm
                                    Bubbles
                                    Participant

                                      Hi Mary,

                                      Lots of folks experience arthralgias while on various immunotherapies. Jubes (a commentor on this forum) dealt with rather extreme problems (you can search for her comments).  While I do think the effects of all immunotherapies are cummulative (something researchers contradicted that at first…but are coming around to it more and more) meaning…at first the side effects (whatever they may be) are mild…but worsen as we take more of the med.  However, for most, the side effects, including arthralgias, improve over time off the medication.  Treatment is generally as expected for arthritis/arthralgias…whatever the cause.

                                      Here's a link to an article about folks who developed arthritis on anti-PD1:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/11/arthritis-associated-with-anti-pd1.html

                                      Here's a link to researchers discussing side effects and their management generally….including arthralgias:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/09/side-effects-and-how-to-manage-them-in.html

                                      And as the other commentor noted…congrats on 7 years without recurrence!  No small thing indeed.  And…it is true….none of us are getting any younger…but it sure beats the alternative.  Talk to your doc about your symptoms and past history.  Hopefully you can find some relief.  Celeste

                                       

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