1. Community
  2. Skin and nails
  3. Urticarial Rash

Hives for 8 months Allergist wants to give me Xoliar injection and I don’t know what to do.

Posted , 8 users are following.

lauren04259
lauren04259

My Ige blood level is 745 and normal is between 0-100 and Allergist thinks that’s causing my hives and food allergies I keep getting every couple months to something new. Endocrinologist I have for Hashimoto’s and Hypothyroid thinks it’s from Hashimoto’s. Not sure if I should get Xoliar though I’m very worried about having a reaction to it because my doctor told me you can have an anaphylactic reaction at any time during treatment and I have anxiety in general before the hives so this is making me way worse with having this be said to me. Has anyone ever got Xoliar and been ok what was your experience and also should I do this I just don’t know what to do need advice? 

0 likes, 22 replies

22 Replies

Next
  • lauren04259
    lauren04259

    Posted

    Also taking steroids and have gained 15 pounds on them and the doctor gave me Cyclosporine til I was able to get Xoliar. Has Cyclosporine worked for anyone? And I take Benadryl every 4-6 hours and Zyrtec twice a day. 
    • wendy62425
      wendy62425 lauren04259

      Posted

      Hi Lauren

      when Xolair did not work for me as well as so many other meds....I went to a specialist and was put on Cyclosporine going up slowly 25mg, 50 mg, 100 mg at that time hives were better but was still breaking out then doctor upped to150mg and decided at add Prednisone...that combination worked for me.....hive free.  She had me slowly go up on Prednisone when hives stopped I stayed on that dosage for weeks along with the Cyclosporine. I was on those meds for awhile then slowly started to bring me down off the Cyclosporine took several months as the key is to go down slowly so the body can adjust.  After I was off the Cyclosporine my doctor started having me ever so slowly go down on the Prednisone 1 mg at a time for a couple of weeks before going down...takes months but important to remain hive free.  I am currently on very low dose of 4 mg along with an Allegra in the morning and one at night.  I was actually down to 1mg Prednisone every other day without Allegra but had a relapse with some stress in my live and that triggered an outbreak.  So I'm slowly going down again and hoping to go into remission.  Xolair worked with first months injections then did not work as it should the next several months so doctor stopped them and referred to specialist at Hopkins here in the state.  She is the only doctor that her treatment works to be hive free and quality of life.  So Cyclosporine and Prednisone was the way to go and hoping one day to be off all meds.  I hope this helps...our bodies are all different so reacts differently to different meds.

      wendy

  • jana94738
    jana94738 lauren04259

    Posted

    HI Lauren

     I have been taking the xolair shot for over a year now.. about the only reaction i have gotten is my arthritus is worse and at times i seem to swell up more.. I do occassionally still get a few hives even with the shot but one benedryl and they are gone.. I also carry an epi pen always just in case .. I did have angioedema before the shot and ended up in er with my throat closing so now i am prepared just in case.. I would rather deal with the few side effects I personally am having than those full blown hives every single day all over my body.. Good luck to you in whatever you decide to do.. This is not a fun disease to deal with or whatever they call it.. it is horrible and messes with your everyday life..

  • michelle07282
    michelle07282 lauren04259

    Posted

    Hi Lauren,

    I have just literally finished a 6 month treatment plan and had my last injection a week ago. I absolutely sympathise with you as I was exactly the same. I also suffer from anxiety.  Every time I have the injection they keep me in for two hours for observation. I usually sit in the waiting room after reading a book.  They give me one injection in each arm. I have been told it’s extremely rare for anaphylactic to kick in but it’s a risk they do make you aware of. Also my hives cause my face and lips to swell so in theory I can go into anaphylactic shock if it goes down my throat. They say if it’s going to react it will be within those two hours of you sitting there. I know it’s boring sitting about but worth it. Just take things to keep you occupied. I have to say my hives have disappeared so far, but I still get swelling in places which is uncomfortable. But I’m so happy to see my skin back again as I was an extreme case where from head to toes I was covered in bright red hives that I didn’t have much Norma skin. Unfortunately I was left like that for nearly a year with no diagnosis which made me so depressed. So from my experience xolair was a blessing. It’s natural to feel scared as we hear the word anaphylactic. But honestly I have been fine and they have made a huge impact on my life that I feel so much happier with life. 

    • always_somethin
      always_somethin michelle07282

      Posted

      YES YES YES! all of this!

      there was a del taco right by my allerigsts office... so... id stop there, grab a giant beverage and some breakfast burritos for after my appointment (i always had my appointment in the morning for convenience)... brought a book (im a librarian so... reading is my favorite) and also made sure my phone was fully charged so i could candy crush it up! after a few visits i didnt even need to wait the full two hours... just hung out for about an hour and a half or so.

      DO IT! hives are no fun. even if it doesnt work for you, at least you know you tried it! and that feels good all in itself.

  • always_somethin
    always_somethin lauren04259

    Posted

    TAKE THE XOLAIR!!!!!!

    i had zero negative reactions. the shot is subcutaneous so you dont even feel it. The worry for anaphylaxis is not needed. Afterall, your hives could get so bad you go into anaphylaxis, technically... so...

    try the xolair.

    I have solar urticaria and i did xolair. i would do it all over again and again.

    Anything to make me not hive out!

    • jana94738
      jana94738 always_somethin

      Posted

      HI 

      I have taken xolair for over a year and all of a sudden it is not working.. I am getting hives everyday tho not as bad but still I had none for a long time.. has this happened to anyone else who takes xolair.. ??

    • always_somethin
      always_somethin jana94738

      Posted

      hi there! sometimes (especially at the year mark) our bodies like to get used to xolair. i had my dosage more frequently (every 3 weeks instead of 4) and it helped!
    • jana94738
      jana94738 always_somethin

      Posted

      I wish i could have mine more often but it has to be 29 days apart or the insurance wont pay and at the price they charge i could never afford it .. it is over 5000.00
    • always_somethin
      always_somethin jana94738

      Posted

      My insurance doesn’t pay for all of it, there is a company that helps pays for it!!! I pay $5 for the shots! Look into it! Genentech patient assistance card!
    • jana94738
      jana94738 always_somethin

      Posted

      I know about that it is only if my insurance would not pay and they will pay.. but for every 29 days.. I need to ask my allergist if they will pay if she asks for it earlier
  • Bohrsmodel
    Bohrsmodel lauren04259

    Posted

    Try Chinese medicine. It worked wonderfully well for my nephew. You can read about his experience on my post in this forum. Good luck.
    • jana94738
      jana94738 Bohrsmodel

      Posted

      no chinese dr around here.. and i cant find your post about it.. where is it located.. thank you so much
    • SailingDreams
      SailingDreams Bohrsmodel

      Posted

      Saying "Try Chinese Medicine" isn't very helpful. There are thousands of Chinese herbs and many types of treatments. And like Jana94738 said, it's also very difficult to find Bohrsmodel's past post. I wish folks could either post a link or be more specific. 😦

Back to top
Next

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.