Pressure Urticaria Hives (rash)/Vitiligo

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    • September 17, 2017 at 6:35 am
    Sharon93065
    Participant

      I had Dermatologist visit  yesterday.  Followup from several months ago when i went to get a topical steroid cream for the rashes/hives I was getting.  I had taken a photo of my naked chubby body that showed how my entire side i slept in was broke out.  I would wake up at 1:30am totally covered in hives on the side of my body that my slept on.  My nightgown was 60%cotton, 40% polyester.  I went thru a period where the elastic in my underwear, anything not pure cotton when make me break out, mostly in the middle of the night.  So he gave me the diagnosis of pressure urticaria hives. I  Ihad other rashes also.  Thanks for the advise from others in this forum i was using Aveena cream for ezcema which has colodial oatmeal in it, aloe vera, you name it I was using it.  My scalp itched terribly.  I started with a benadryl, which knocked me out, then went to allegra, which was my salvation.  If i forgot to take one in the am, watch  out at 1:30am.  Trouble is, it was a 24 hr dosage and i think that was not good fo rmy liver.  So i bought the 12 hour. But haven't been able to try it out yet. My liver panel numbers went way up and i didn't get to have my 4th Opdivo/Yervoy and i cannot get the Opdivo Maintenance until that improves. I have drug induced Hepatitis D.  It was improving then started to rise again so i am now back up to 100mg a day of Prednisone and of course NO RASHES and can wear all the polyester and elastic I want, no itching.  Monday i go in to see what the latest Petscan that i just had shows.  I am nervous.  I am so tired all the time, insomia, and  just don't feel good. It also looks like i have white spots on the back of my hand Vitaligo.  I was upset when I first saw it.  Someone else on the forum said his oncologist said that means the immunotherapy was working.  My dermatologist agreed and explained how the treatment was working on melanin on our skin, I can't remember everything he said.  

      Question please.  How long does the Opdivo/Yervoy keep working in our bodies until we can get he Opdivo Maintenance and Target Therapy?  

       

       

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        • September 17, 2017 at 8:53 am
        ed williams
        Participant

          Hi Sharon, Vitiligo is linked with positive response, I will try to find a link to Dr. Weber talking about this topic for you. The answer to your second question is every melanoma patient is different, more Ipi isn't always necessary and those who have to stop early do to IRAE's can have long durable responses. If you go to the 31.00 min mark you will find Weber talking about vitiligo https://m.youtube.com/watch?v=ysbSCeqJpq0   Second link is from 2016 but still holds true today https://m.youtube.com/watch?v=VCOAk7i9kmU  Best wishes!!! Ed

          • September 17, 2017 at 9:22 am
          Bubbles
          Participant

            Hi Sharon,

            Sorry you are not feeling well and dealing with the liver issues.  Yervoy is the bad boy of side effects, so once you are on the nivo alone phase, most folks have a decrease in side effects.  How long this works….the million dollar question.  But, the ratties who started all these immunotherapies are showing that responses can be very durable…meaning our t cells/immune systems learn and remember their lessons!!!  I am 4 years post nivo treatment alone and remain NED.  As far as vitiligo…not loving mine either…but…I like LIVING and it is a good prognostic sign.  Here is some info, data, strange pics, and lots of additional links if you are interested:    http://chaoticallypreciselifeloveandmelanoma.blogspot.co.uk/search?q=vitiligo  

            I wish you well.  Celeste

             

              • September 17, 2017 at 3:58 pm
              Sharon93065
              Participant

                Dear Ed and Celeste, you came thru for me again.  I read it all.  And feel more positive. Waiting for my 2:30pm appt tomrrow first Petscan results since starting treatment.  

                 

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