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Does the Ipi cause a “welt-like” rash?

Forums General Melanoma Community Does the Ipi cause a “welt-like” rash?

  • Post
    Gracie
    Participant

       On Dec. 15th, I received my 5th dose, 1st of maintenance, of Ipi or placibo with minimal if any side effects up to this point. On Dec. 23 I woke up with a rash behind my ears.  I stopped using any lotion or perfume and within three days, had a raised, welt- like rash around my neck and shoulders. I use hydrocortizone cream with little relief.  It has not changed in 10 days.  It itches if I touch it.  I can't think of anything that could have caused the rash.  I have appt. with Oncologist on Wed the 5th.

       On Dec. 15th, I received my 5th dose, 1st of maintenance, of Ipi or placibo with minimal if any side effects up to this point. On Dec. 23 I woke up with a rash behind my ears.  I stopped using any lotion or perfume and within three days, had a raised, welt- like rash around my neck and shoulders. I use hydrocortizone cream with little relief.  It has not changed in 10 days.  It itches if I touch it.  I can't think of anything that could have caused the rash.  I have appt. with Oncologist on Wed the 5th. Has anyone experienced small welts in the form of a rash due to Ipi treatment?  Is it unusual to have rash around neck and shoulders? 

      Gracie, 3b

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    • Replies
        Jerry from Cape Cod
        Participant

          Hi Gracie

          It's possible, but I haven't run across it.  Others may have.  I suggest that you contact your trial nurse or doctor as soon as possible to discuss the welts and the best treatment.

          Jerry from Cape Cod.
          Stage IV, IPI week 100 TODAY !!!!

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          Jerry from Cape Cod
          Participant

            Hi Gracie

            It's possible, but I haven't run across it.  Others may have.  I suggest that you contact your trial nurse or doctor as soon as possible to discuss the welts and the best treatment.

            Jerry from Cape Cod.
            Stage IV, IPI week 100 TODAY !!!!

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            ChrisB
            Participant

              I had a very bad rash on the shoulder area  while doing a clinical trial of MDX-010 (Ipilimumab) and/or a vaccine in which placebo could have also been administered back in 2005.  ……I still don' t know for sure what I received because the trial was blinded and they haven't disclosed the info.

              I had to have an IV of steroids and a followup prescription to keep in under control.

              When I had a repeat of the trial in 2008 I used Bag Balm for itch relief which worked quite well however the rash wasn't nearly as bad.

               

              Best wishes that you get some relief soon.

              Chris

               

              PS: If you're interested in trying it….Bag Balm can be found at your local pharmacy in a green can with a cow head and flowers on the lid.  if you can't find it ask the pharmacist to point you in the right direction.

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              ChrisB
              Participant

                I had a very bad rash on the shoulder area  while doing a clinical trial of MDX-010 (Ipilimumab) and/or a vaccine in which placebo could have also been administered back in 2005.  ……I still don' t know for sure what I received because the trial was blinded and they haven't disclosed the info.

                I had to have an IV of steroids and a followup prescription to keep in under control.

                When I had a repeat of the trial in 2008 I used Bag Balm for itch relief which worked quite well however the rash wasn't nearly as bad.

                 

                Best wishes that you get some relief soon.

                Chris

                 

                PS: If you're interested in trying it….Bag Balm can be found at your local pharmacy in a green can with a cow head and flowers on the lid.  if you can't find it ask the pharmacist to point you in the right direction.

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                Gracie
                Participant

                  This is Gracie.  I thought I would share results of Dr. appt. regarding rash.  I saw my trial study team, including oncologist and viral doc.  They were about ready to biopsy a patch of rash off neck when I mentioned I had had a sore throat over the holidays. They concluded that my immune system was overacting to virus due to possible ipi infusion which triggered histamines which caused rash on skin.  I was prescribed topical cream with steroids and Zyrtec twice a day for 2 weeks.  The rash had spread on cheeks before it started to subside.  Zyrtec wipes me out so I quit using it but the cream is good.  I would love to know that I am getting the ipi.  Maybe?  Thank you to those who responded.

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                  Gracie
                  Participant

                    This is Gracie.  I thought I would share results of Dr. appt. regarding rash.  I saw my trial study team, including oncologist and viral doc.  They were about ready to biopsy a patch of rash off neck when I mentioned I had had a sore throat over the holidays. They concluded that my immune system was overacting to virus due to possible ipi infusion which triggered histamines which caused rash on skin.  I was prescribed topical cream with steroids and Zyrtec twice a day for 2 weeks.  The rash had spread on cheeks before it started to subside.  Zyrtec wipes me out so I quit using it but the cream is good.  I would love to know that I am getting the ipi.  Maybe?  Thank you to those who responded.

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                      Jim in Denver
                      Participant

                        Hi Gracie,

                        Ipi related rashes can occur in various locations, usually between top of the head and soles of the feet :)  Seriously, my own experience is a ferocious rash after my 4th infusion on arms, torso, thighs and calves (front and back).  Nasty itch as well.  I think your study team is suggesting that your symptoms are consistent with and immune response from Ipi, and that is certainly what I think based on what you have written.  Generally speaking, it is considered a positive indicator to have side effects from Ipi (including gastrointestinal issues, vitiligo, and others) because they indicate that the immune system has been "unleashed" by the Ipi.  My Docs recommended CeraVe cream, which has helped me.  Living in a dry climate, like Utah and Colorado, means your skin is very dry to begin with, but stay away from most lotions, and try Benadryl instead of Zyrtec. 

                        Best Wishes,

                        Jim

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                        Jim in Denver
                        Participant

                          Hi Gracie,

                          Ipi related rashes can occur in various locations, usually between top of the head and soles of the feet :)  Seriously, my own experience is a ferocious rash after my 4th infusion on arms, torso, thighs and calves (front and back).  Nasty itch as well.  I think your study team is suggesting that your symptoms are consistent with and immune response from Ipi, and that is certainly what I think based on what you have written.  Generally speaking, it is considered a positive indicator to have side effects from Ipi (including gastrointestinal issues, vitiligo, and others) because they indicate that the immune system has been "unleashed" by the Ipi.  My Docs recommended CeraVe cream, which has helped me.  Living in a dry climate, like Utah and Colorado, means your skin is very dry to begin with, but stay away from most lotions, and try Benadryl instead of Zyrtec. 

                          Best Wishes,

                          Jim

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                        JenC
                        Participant

                          My husband just started ipi last week and just yesterday got a blister like rash on his shoulder.  I recalled this posting and reviewed your replies, and am somewhat relieved.  However, upon reviewing the clinical trial paperwork I saw a note about toxic epidermal necrolysis and started worrying.  I am waiting to hear back from the oncologist but in the meantime I am somewhat freaking out.  I hope that they can evaluate the rash asap – but I was wondering if anyone here had input.  His rash is not so much a welt, but it looks like a blister with some fluid in it and there is peeling skin around this.  It is near some subq tumors but not immediately on them.  Thanks in advance.

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                          JenC
                          Participant

                            My husband just started ipi last week and just yesterday got a blister like rash on his shoulder.  I recalled this posting and reviewed your replies, and am somewhat relieved.  However, upon reviewing the clinical trial paperwork I saw a note about toxic epidermal necrolysis and started worrying.  I am waiting to hear back from the oncologist but in the meantime I am somewhat freaking out.  I hope that they can evaluate the rash asap – but I was wondering if anyone here had input.  His rash is not so much a welt, but it looks like a blister with some fluid in it and there is peeling skin around this.  It is near some subq tumors but not immediately on them.  Thanks in advance.

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