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I was told the only option at this point is Xolair...

Posted , 4 users are following.

frankie116
frankie116

Are there any forum users currently on Xolair?  I was told today that this is my only option.  I was very surprised since I have had the hives since Thanksgiving (somewhat new).  For the last 8-9 weeks I have been on Prendisone as everytime I try to go off, I get a huge flare up.  Currently I am on 3mg which keeps them somewhat in check.  In addition, I am on Ranitidine (Zantac) in the morning and evening, Levocetirizine (AM), Hydroxyzine 100mg in PM and singular in the PM.  I do not think this is due to food although I notice some swelling and exascerbation when I drink wine-maybe the sulfites??.  I am of course going for a second opinion at Mt Sinai in NYC.  I also have MS (relapsing remitting) so I have an autoimmune disease.  My MS doctor does not correlate this with the hives.  If anyone has experience with Xolair or has had any other success with anything else, please share.

0 likes, 4 replies

4 Replies

  • kathy13404
    kathy13404 frankie116

    Posted

    I have had CIU since 1/5/14. I tried the same regime you have gone through plus more. I started Xolair in 11/08/15. The day after the shot, hives were gone. I failed to get my December shot. Hives came back 12/18/15. I took my next shot 1/8/16 and have been hive free since the day after. It is a godsend but when do you stop, that is the question that my doctor can't answer and I haven't found anyone else that can answer that either. Good Luck!
    • frankie116
      frankie116 kathy13404

      Posted

      Hi Kathy,

      Thanks for the reply. The Xolair was just approved by my insurance so it looks as if possibly next week I could start my first dose.

      I am looking forward to stopping the steroids I have niw been on wayyyy too long.

  • haley42039
    haley42039 frankie116

    Posted

    Hi I'm sorry to hear your struggle and I know this is a very very frustrating, miserable diagnosis. I'm going to basically repost my earlier post just to make sure you see it. I am currently about to get my fifth dose of xolair. I had a follow up two weeks ago because xolair is not working for me, I'm going to continue to take it, along with my daily dose in hopes it will work. Mostly because I'm praying it will magically start working, however, they said it SHOULD be working by now. So here is my story and I hope it helps!

    I'm a 24 year old female, in March of 2015 after a week of having a cold I woke up feeling better from the cold but covered in hives. I have quite a few allergies but didn't come in contact with any of them that I could think of. I took Benadryl, sure they would go away. After three days of the hives spreading and getting worse I went to the doctor, they gave me a handful of medication including prednisone as well as a kenelog shot. A few days later the hives went down, as soon as I got off the steroids however, they all returned. Over the next five months I tried montelukast, ranitidine, multiple doses of prednisone, hydroxizine, allertec, tons of Benadryl, Claritin and many others I can't even remember the names of. Over that time I had multiple doctor visits that consisted of telling me I should have used an epi pen it was so bad and my face was so deformed with swelling, I was prescribed epi pens and on several occasions was given Benadryl shots, kenelog shots and another shot I don't remember the name of. After many doctor visits and trying different medications to no avail, I finally got the hives to offer a little relief, after getting off an extended dose of prednisone and staying up on hydroxizine four times a day, Flonase two times a day, ranitidine four times a day and allertec four times a day. Finally I saw a specialist who recommended xolair after I tested positive to an autologous serum test. I am four months into shots and I have been able to cut back on some of the medication but when I have worse days I have to bump it back up. If I fail to take my medicine for a few days the hives, itching, facial deformation, facial, lip and mouth swelling all return. My Doctor said I should be feeling better by now with xolair and so I've scheduled an appointment with him next week. I'm feeling frustrated and discouraged that it's been almost a year of this.

    Although my vitamin D levels (I live in Alaska) and my thyroid levels tested fine, my doctor added vitamin D along with my other medications that are as follows:

    Xolair shots 300 mg?(I believe) once a month

    Vitamin D once daily

    Ranitidine 150 mg twice, two times daily

    Hydroxizine every eight hours as needed

    Allertec two times daily

    Claritin two times daily

    No noticed difference and if anything my hives have been worse the last month. Wish I had some cure to tell you! Hopes this helps at all.

    Also I'm sure your doc told you, xolair is ridiculously expensive but their are grants that will helps pay. If you want or need more info feel free to ask!

    Good luck!

    • frankie116
      frankie116 haley42039

      Posted

      Haley,

      Thank you for sharing. Symptoms and story are very similar. I too am on most of the meds you listed including singular and xysol. I have mot heard of the kenelog shot but I am slated to go on xolair as soon as it is delivered to the dr office. I have been unable to go off the steroids since Nov 29, everytime i go off, I have horrible hives with facial deformation and I usually wind up in the ER.

      Praying the xolair works...I will send an update in 2 weeks. Have you had a ANATiter blood test? Was it positive?

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