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I've been battling ICU for 4 years.

Posted , 2 users are following.

Eminor12
Eminor12

Hi, I am Emily. I have been battling ICU for 4 years, and I am going into my 12 month of treatment. I turned to Xolair after multiple treatments failed. For anyone battling severe hives, redness, itching and pain I understand how you feel. I just came across this site. I am happy to be among individuals who are dealing with my same issue. Life has been hard living 24 hours a day with ICU but I know remission is out there for all of us. Keep your heads up. smile 

1 like, 5 replies

5 Replies

  • Eminor12
    Eminor12

    Posted

    I'm battling Idopathic Chronic Urticaria. Aka ICU
  • wendy62425
    wendy62425 Eminor12

    Posted

    Hello...is the Xolair working for you?  Unfortunately did not work for me....only the first couple of weeks.

    wendy

    • Eminor12
      Eminor12 wendy62425

      Posted

      It's been hit or miss. I'm going into my first year, and it still comes back... I am going into another year of treatment. I still have issues when I eat or drink certain things and I have skin reactions to heat. I'm sorry to hear yours does not work. Have you thought of any other options? I am taking allergy pills 2 times a day as well.
    • wendy62425
      wendy62425 Eminor12

      Posted

      Hello Eminor12

      I am currently on cyclosporine and slow taper of prednisone down to 8mg this week since Xolair did not work as it should have.  I have been hive free for several weeks which has been a blessing.  If I remain hive free on 5 mg of prednisone and can go off it then I will slowly taper off the cyclosporine.   My case was very severe and doctors had no choice but to medicate this way.  I just pray for remission as we all hope for.  I am not taking any antihistamine.  I just hope for a cure of this terrible disease...there is so much suffering......and not enough help. Keep us posted.

      take good care

      Wendy

  • mh96526
    mh96526 Eminor12

    Posted

    PLEASE READ - THIS WORKED FOR ME

    Please try taking 1 antihistamine (like Zyrtec) AND 1 antacid daily. I had severe hives for two years following my hysterectomy. Sometimes my feet would swell so much that I had no arch and my skin would split. My hives were caused by pressure, stress, heat, you name it. Once I started taking both the antihistamine and the antacid together every morning, I stopped having hives after a couple of weeks.

    From what I understand, those individuals with chronic urticaria need to block both the h1 histamines and the h2 histamines. H1 histamines are blocked by the allergy type of antihistamine and h2 histamines are blocked by antacids.

    I took that combination for 9 years with great success. Zero issues with hives. Now, I don't have to take either.

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