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Relief for itching and rash?

Forums General Melanoma Community Relief for itching and rash?

  • Post
    buffcody
    Participant

      I'm 10 weeks out from my last ipi infusion but my itching and rash has reached their height (I hope) the last week or so.  My doctor's office has recommended Sarna, though they also earlier had recommended an over the counter cream containing cortisone.  I wonder if any of you have had similar long term side effects after ipi and if you found some other over the counter product that gave more relief. Or prescribed?  I'm trusting that still experiencing these kind of side effects after 10 weeks eans that my immune system is still actively f

      I'm 10 weeks out from my last ipi infusion but my itching and rash has reached their height (I hope) the last week or so.  My doctor's office has recommended Sarna, though they also earlier had recommended an over the counter cream containing cortisone.  I wonder if any of you have had similar long term side effects after ipi and if you found some other over the counter product that gave more relief. Or prescribed?  I'm trusting that still experiencing these kind of side effects after 10 weeks eans that my immune system is still actively fighting the melanoma not just giving me problems.  Next set of scans in two weeks.

    Viewing 5 reply threads
    • Replies
        kylez
        Participant

          I've been having to manage skin outbreaks since IL-2 and throgh IPI. I've settled on Desonide cream, 0.05% (prescription). It is a low-potency corticosteroid cream. If I didn't use it, over time my fingers and calves would gradually become weeping, bloody messes and I wouldn't be sleeping from the itching.

          Previoiusly had used Protopic which is not coritcosteroid but insurance-wise is $$$ for me ($160/tube). It also controlled my skin outbreaks. I had also used Fluocinide but it's a very high potency corticosteroid and Desonide is enough.

          Hope this helps, Kyle

          kylez
          Participant

            I've been having to manage skin outbreaks since IL-2 and throgh IPI. I've settled on Desonide cream, 0.05% (prescription). It is a low-potency corticosteroid cream. If I didn't use it, over time my fingers and calves would gradually become weeping, bloody messes and I wouldn't be sleeping from the itching.

            Previoiusly had used Protopic which is not coritcosteroid but insurance-wise is $$$ for me ($160/tube). It also controlled my skin outbreaks. I had also used Fluocinide but it's a very high potency corticosteroid and Desonide is enough.

            Hope this helps, Kyle

              kylez
              Participant
                dunno why my reply posted as anon…
                –Kyle
                kylez
                Participant
                  dunno why my reply posted as anon…
                  –Kyle
                  kylez
                  Participant
                    dunno why my reply posted as anon…
                    –Kyle
                    buffcody
                    Participant

                      Thanks, Kyle.  I emailed my oncologist with pictures today and he told me to see my dermatologist.  The latter did not believe that a medicine (Yervoy) I had stopped taking 10 weeks ago could possibly be causing the symptoms.  I tried to explain how ipi works but I don't know if he was really listening.  I pointed out to him red blood blotches that come for a week, disappear, then come back in exactly the same spots.  He told me every time that I took that line that they were bruises. (From what, say I!).   He finally decided that all the "rashes" were caused by my itching and gave me a prescription for a corticosteroid cream called Triamcinolone.  I will start using it tonight but must admit I am not very confident.  I am more and more convinced that we who are the almost pioneers in ipi know a whole lot more than most doctors about all aspects.

                      kylez
                      Participant

                        Triamcinolone is a treatment for eczema among other things, as are the ointments I have used (desonide, protopic, etc.)

                        In my case my symptoms seem to be somewhere between eczema and psoriasis (both of which are immune overreactions attacking the skin.) Since IPI targets the immune system, skin affects seem plausible — as the Yervoy web site says, 2 of the 4 most common side effects are itching and rash.

                        My issues wth eczema, mostly on my fingers, began in 2006, 4 years prior to any melanoma treatment. With IL-2 in 2010, it started coming up much more spontaneously on my legs too. I called them my IL-2 legs. For me it starts as itchy bumps. If I jam my finger nail into them I get relief for about 5 seconds — not a good idea. My skin shreds pretty easily with even mild itching, if untreated these areas get bigger and start becoming more like partially open weeping sores. It continued with Yervoy. Now I keep all of those areas very well under control with ointment, like whack-a-mole pretty much daily since 2010. The ointment is like magic, sealing the areas up again. I try not to overuse it.

                         

                        kylez
                        Participant

                          Triamcinolone is a treatment for eczema among other things, as are the ointments I have used (desonide, protopic, etc.)

                          In my case my symptoms seem to be somewhere between eczema and psoriasis (both of which are immune overreactions attacking the skin.) Since IPI targets the immune system, skin affects seem plausible — as the Yervoy web site says, 2 of the 4 most common side effects are itching and rash.

                          My issues wth eczema, mostly on my fingers, began in 2006, 4 years prior to any melanoma treatment. With IL-2 in 2010, it started coming up much more spontaneously on my legs too. I called them my IL-2 legs. For me it starts as itchy bumps. If I jam my finger nail into them I get relief for about 5 seconds — not a good idea. My skin shreds pretty easily with even mild itching, if untreated these areas get bigger and start becoming more like partially open weeping sores. It continued with Yervoy. Now I keep all of those areas very well under control with ointment, like whack-a-mole pretty much daily since 2010. The ointment is like magic, sealing the areas up again. I try not to overuse it.

                           

                          kylez
                          Participant
                            If the steroid cream helps you (by tamping down the local immune response in the skin) you could perhaps look into otber eczema-specific practices for reducing inflammation. I’ll be curious whichever way it goes for you, buffcody.

                            I realized my reply was more about Il-2 seemingly intensifying my eczema long term, rather than about IPI, which is your issue.

                            With IPI, for the first couple of weeks the itching and eczema seemed ti subside and thought I’d lost the IL-2 legs. But they returned. I also got a big blister bubble on my face which I havent seen before or since. And some of my scar tissue whitened. The eczema was back at least as strong fairly shortly.

                            kylez
                            Participant
                              If the steroid cream helps you (by tamping down the local immune response in the skin) you could perhaps look into otber eczema-specific practices for reducing inflammation. I’ll be curious whichever way it goes for you, buffcody.

                              I realized my reply was more about Il-2 seemingly intensifying my eczema long term, rather than about IPI, which is your issue.

                              With IPI, for the first couple of weeks the itching and eczema seemed ti subside and thought I’d lost the IL-2 legs. But they returned. I also got a big blister bubble on my face which I havent seen before or since. And some of my scar tissue whitened. The eczema was back at least as strong fairly shortly.

                              kylez
                              Participant
                                If the steroid cream helps you (by tamping down the local immune response in the skin) you could perhaps look into otber eczema-specific practices for reducing inflammation. I’ll be curious whichever way it goes for you, buffcody.

                                I realized my reply was more about Il-2 seemingly intensifying my eczema long term, rather than about IPI, which is your issue.

                                With IPI, for the first couple of weeks the itching and eczema seemed ti subside and thought I’d lost the IL-2 legs. But they returned. I also got a big blister bubble on my face which I havent seen before or since. And some of my scar tissue whitened. The eczema was back at least as strong fairly shortly.

                                kylez
                                Participant

                                  Triamcinolone is a treatment for eczema among other things, as are the ointments I have used (desonide, protopic, etc.)

                                  In my case my symptoms seem to be somewhere between eczema and psoriasis (both of which are immune overreactions attacking the skin.) Since IPI targets the immune system, skin affects seem plausible — as the Yervoy web site says, 2 of the 4 most common side effects are itching and rash.

                                  My issues wth eczema, mostly on my fingers, began in 2006, 4 years prior to any melanoma treatment. With IL-2 in 2010, it started coming up much more spontaneously on my legs too. I called them my IL-2 legs. For me it starts as itchy bumps. If I jam my finger nail into them I get relief for about 5 seconds — not a good idea. My skin shreds pretty easily with even mild itching, if untreated these areas get bigger and start becoming more like partially open weeping sores. It continued with Yervoy. Now I keep all of those areas very well under control with ointment, like whack-a-mole pretty much daily since 2010. The ointment is like magic, sealing the areas up again. I try not to overuse it.

                                   

                                  buffcody
                                  Participant

                                    Thanks, Kyle.  I emailed my oncologist with pictures today and he told me to see my dermatologist.  The latter did not believe that a medicine (Yervoy) I had stopped taking 10 weeks ago could possibly be causing the symptoms.  I tried to explain how ipi works but I don't know if he was really listening.  I pointed out to him red blood blotches that come for a week, disappear, then come back in exactly the same spots.  He told me every time that I took that line that they were bruises. (From what, say I!).   He finally decided that all the "rashes" were caused by my itching and gave me a prescription for a corticosteroid cream called Triamcinolone.  I will start using it tonight but must admit I am not very confident.  I am more and more convinced that we who are the almost pioneers in ipi know a whole lot more than most doctors about all aspects.

                                    buffcody
                                    Participant

                                      Thanks, Kyle.  I emailed my oncologist with pictures today and he told me to see my dermatologist.  The latter did not believe that a medicine (Yervoy) I had stopped taking 10 weeks ago could possibly be causing the symptoms.  I tried to explain how ipi works but I don't know if he was really listening.  I pointed out to him red blood blotches that come for a week, disappear, then come back in exactly the same spots.  He told me every time that I took that line that they were bruises. (From what, say I!).   He finally decided that all the "rashes" were caused by my itching and gave me a prescription for a corticosteroid cream called Triamcinolone.  I will start using it tonight but must admit I am not very confident.  I am more and more convinced that we who are the almost pioneers in ipi know a whole lot more than most doctors about all aspects.

                                    kylez
                                    Participant

                                      I've been having to manage skin outbreaks since IL-2 and throgh IPI. I've settled on Desonide cream, 0.05% (prescription). It is a low-potency corticosteroid cream. If I didn't use it, over time my fingers and calves would gradually become weeping, bloody messes and I wouldn't be sleeping from the itching.

                                      Previoiusly had used Protopic which is not coritcosteroid but insurance-wise is $$$ for me ($160/tube). It also controlled my skin outbreaks. I had also used Fluocinide but it's a very high potency corticosteroid and Desonide is enough.

                                      Hope this helps, Kyle

                                      audgator
                                      Participant

                                        Itching was my only side effect from ipi and not as bad as some have posted about here.  It continued to varying degrees right on into my PD1 trial. Now it may be getting worse prior to each maintenance treatment but I may not have enough data to say that for sure.  Anyway, on ipi I was using a LOT of otc hydrocortizone. My derm gave me a Rx  but that turned out to be weaker than the otc according to my pharm so I didn't fill it.  The relief from hydrocortizone only lasted about 3 hours & there were precautions on the label about how often to apply so I started using plain moisturizing cream. That worked just as well  and using store brands saved a lot of $$$.  I eventually settled on a generic version of Gold Bond.  At my last onc appt she sugested Aveeno or Eucerin. She also recommended using a moisturizing soap like Dove in a warm, not steaming hot, shower, pat drying and then apply the lotion. I am trying the Aveeno and feel better but then, it has always ebbed and flowed so we will see.    Dan

                                        audgator
                                        Participant

                                          Itching was my only side effect from ipi and not as bad as some have posted about here.  It continued to varying degrees right on into my PD1 trial. Now it may be getting worse prior to each maintenance treatment but I may not have enough data to say that for sure.  Anyway, on ipi I was using a LOT of otc hydrocortizone. My derm gave me a Rx  but that turned out to be weaker than the otc according to my pharm so I didn't fill it.  The relief from hydrocortizone only lasted about 3 hours & there were precautions on the label about how often to apply so I started using plain moisturizing cream. That worked just as well  and using store brands saved a lot of $$$.  I eventually settled on a generic version of Gold Bond.  At my last onc appt she sugested Aveeno or Eucerin. She also recommended using a moisturizing soap like Dove in a warm, not steaming hot, shower, pat drying and then apply the lotion. I am trying the Aveeno and feel better but then, it has always ebbed and flowed so we will see.    Dan

                                          audgator
                                          Participant

                                            Itching was my only side effect from ipi and not as bad as some have posted about here.  It continued to varying degrees right on into my PD1 trial. Now it may be getting worse prior to each maintenance treatment but I may not have enough data to say that for sure.  Anyway, on ipi I was using a LOT of otc hydrocortizone. My derm gave me a Rx  but that turned out to be weaker than the otc according to my pharm so I didn't fill it.  The relief from hydrocortizone only lasted about 3 hours & there were precautions on the label about how often to apply so I started using plain moisturizing cream. That worked just as well  and using store brands saved a lot of $$$.  I eventually settled on a generic version of Gold Bond.  At my last onc appt she sugested Aveeno or Eucerin. She also recommended using a moisturizing soap like Dove in a warm, not steaming hot, shower, pat drying and then apply the lotion. I am trying the Aveeno and feel better but then, it has always ebbed and flowed so we will see.    Dan

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