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Anyone on xolair/omalizumab in uk for CIU?

Posted , 8 users are following.

amey793
amey793

Hi everyone, been suffering with CIU for nearly 3 years now, the hives always affect my upper chest arms neck & ears & usually occur in the middle of the night but can be anytime of day or night. Every medication I have tried has worked at first but then stopped working after a period of a few weeks-months at a push. I'm currently taking ciclosporin which I've been on for 1 year 3 months now, I'm in 4 x fexofenadine a day, montelukast & doxepin (although I struggle to function the next day after taking this & have 2 young kids).

Anyway, montelukast worked for 3 months & has now stopped & im at the end of my tether & actually feel a bit demented with the lack of sleep.. So I'm wondering if omalizumab might be the way to go.. Has anyone been given it in uk? If so did it happen same day as appointment? Did you have to wait? Good results?

I am seeing the dermatologist tomorrow, I see one at Sheffield & have been told before that dr sabroe is an expert in CIU at Sheffield & im surprised they haven't reffered me to see her in clinic, I will ask about this tomorrow.

Thanks in advance

0 likes, 35 replies

35 Replies

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  • hanneke54158
    hanneke54158 amey793

    Posted

    I'm in Norfolk and have been suffering for 21 months ... Only difference I seem to have is that the Urticaria has made me allergic to anti histamine!! After a long battle to prove this, I had my first shots of omalizumab today ... So I will keep you posted!
    • amey793
      amey793 hanneke54158

      Posted

      I really hope it works for you! Did they start it soon after you discussed it? I'm worried I might have to wait a long time x
    • cindyf389
      cindyf389 amey793

      Posted

      I hope it works this time around. I'm at my end of this fight. It's been a total of 9 yrs sad

      2 being severe . Getting the injection does not take long. I had to have it shipped from a different city, and appts booked through a different country. But they are efficient as long as you can pay for it.

    • hanneke54158
      hanneke54158 amey793

      Posted

      Once they decided it was my only option I just had to do a four week give monitoring (ticking on a sheet how severe they are in certain scale brackets) and then when i went back they booked me in ...

      Might be too early to tell but this morning is the best morning I've had for an awfully long time. Coincidence or injection?!

  • desmond01416
    desmond01416 amey793

    Posted

    You need to have quite a high score on the quality of life measures before they will consider Xolair. My advice would be to not downplay the harm this is doing your life. It might be an uphill struggle to try Xolair, but with two children I think it would be worth pushing hard to try it. I feel for you being on Doxepin with two children. That made the first 18-months with our only daughter very very hard and not at all the enjoyable experience it should be. I always felt it was kind of risky looking after them on it because my reaction times would be so slooow. I reversed my car into a pole in a car park one morning after Doxepin!
    • amey793
      amey793 desmond01416

      Posted

      I am like a zombie on it & like you am scared I'm not fit enough to look after kids, I worry that I won't wake up in the night for the kids. I think I will emphasise the effect it's having on my mental well being like you say & hope that I can try the treatment. I filled in the weekly score thing a while back & scored over what the NICE guidelines state is enough to be considered for it. I have come to the point where if one more person asks me if I've changed my washing powder or might be allergic to oranges, peanuts... The air.. I might spontaneously combust 🙈! I think it's very difficult for someone who hasn't suffered with it to realise how debilitating it actually is. Thanks for the reply x
    • cindyf389
      cindyf389 amey793

      Posted

      I completely understand you. I have 3 children of my own and getting up everyday is a struggle. . Especially when you are drugged on so many different medications.

      I feel bad for my children and boyfriend. I don't know where I would be if it went for their support.

      Xo

  • cindyf389
    cindyf389 amey793

    Posted

    Hi Amey

    I have had a severe case of CIU for over 2 yrs.

    I was on Omalizumab for 8 months in 2015 and it only had an effect for about 4 months.

    I am now on next to no medication because my body has become resilient to it all. I dont sleep unless I have Atarax ( For the drowsiness and to lighten up the puritus a bit) and Ativan for anxiety. It seems to shut my mind down enough to allow some peace of mind. I have an appt in April to discuss the injection again but they want to double up my dose and with the cost of the xolair it's just not possible. My quality of life is noto very good and my ability to concentrate is nil. This condition is extremely difficult to work with. I have talked to several people who have great success with Omalizumab unfortunately I am not one of them .

    I wish you the best of luck

    • amey793
      amey793 cindyf389

      Posted

      I'm sorry it hasn't worked for you sad it's an incredibly difficult thing to live with. It's a shame a lot comes down to cost. I find it reassuring that other people have the same resistance to medications, whenever anything works I never get excited anymore because I know it will be short lived!! I shall report back tomorrow. Thank you for your reply x
    • irishcree
      irishcree amey793

      Posted

      Continued .....

      I have scene dozens of doctors, one at a time and in groups. Tried numerous treatments and more medications than I ever imagined taking in a lifetime. One thing I do know is in spite of all this weirdness I am healthy. Today I am in good spirits and think it could be worse. Tomorrow I may not have the strength to get out of bed and be cranky as hell. I fell down the stairs a few weeks ago, my eyes were swelled and I wasn't being careful. As my husband drove me to the hospital I was mad. After six stitches I saw how close the cut was to eyelid I was just relieved I didn't lose my eye when I fell into the glass cabinet. The one thing I have learned is it could always be worse, we need to be kind to ourselves, and it won't always be this way.

  • irishcree
    irishcree amey793

    Posted

    Hello to all my fellow CIU sufferers. I am a 54 year old woman in Canada. I had my first out break CIU almost six years ago. Since then my symptoms are constantly evolving. As of now I have an allergic reaction to water. rain, snow, my own perspiration, stress, my flight or fight emotion and any clothing which is not cotton. The latest change is toothpaste, ketchup, anything at all spicy causes my lips to swell and a rash around my mouth in spite of having no allergies. The times I need to have blood tests done or receive an injection are cause to make the injection spot swell and become super hot. I need to use ice packs to bring down the swelling. Even putting on my wedding ring makes my finger swell. I never removed my ring for twenty six years and one day I

    could no longer wear it.

  • wendy62425
    wendy62425 amey793

    Posted

    Good Morning Amey and everyone

    it is so sad to hear so many suffer from this very difficult disease.  I have posted before to share my journey with this.  I am 64 and live in Virginia USA.  I have had CIU three times in my life the first two outbreaks were controllable with Claritan and or Allergra Montelukast and lasted about two years each time and just went away on its own with no breakouts decades apart.  This time probably due to my age has been severe.  It started June 2014 tried past medications and many more but did not work so the doctor put in for the Xolair injections for me.......they worked beautifully by the next day of injection I was Hive Free!!  It lasted a couple of weeks then the hives were back again..we tried a few more months until the doctor said to stop as the Xolair was not working for me😟.  I was then put on cyclosporine slowly bumping me up then doctor added prednisone with a very slow taper.  I have been on both for several months and am down to 100mg Cyclosporine and 5 mg of Prednisone.  I have been hive free for over 5 months now being able to live a normal life...such a blessing!  The hope is to very slowly go off both meds and hopefully go into remission.  I will keep you all posted.  Amey concerning the Xolair injections...it did not work for me but it DOES work for many..I hope it will for you...think positive and try not to stress...easier said than done I know.  I think my CIU has been brought on by stress and anxiety affecting my immune system.  I am starting to take L-Glutamine and will see if I can add Quercetin both naturally helps urticaria.  I would love to treat this disease naturally.  

    I wish you the best Amey.....please keep us all posted on the Xolair.

    best regards

    wendy🌷

    • rose00110
      rose00110 wendy62425

      Posted

      I am happy i found this forum I felt I was the only one but i see now many suffer with this and it's a shame that it has to be this way.  This is almost unbearable at time.  Having hope that you found an answer and finding out it doesnt work i've been dissapointed many times.  I don't put my hopes up anymoe it's been 3 years no and still no answer.   

      Now that you are hive free can you eat anything you want ?

    • wendy62425
      wendy62425 rose00110

      Posted

      Hi Rose

      please talk to your immunologist about the Cyclsporine and Prednisone VERY SLOW taper...It has taken me a year to go down on meds the way my awesome doctor instructed me.  Praise the Lord I am still hive free.  I am able to eat normally.  But always good to eat fresh foods vegetables..meats.  Cut  back on coffee and chocolate 😟 I have one cup a day.  Drink lots of water and I take L-glutamine each day with a probiotic.  Urticaria is a horrible disease...such a blessing I found my doctor. I wish you well...hope this works for you......Xolair works for some as well......but not me.

      hope this helps!

      wendy

      Wendy

    • rose00110
      rose00110 wendy62425

      Posted

      Thank you for your reply. Depending on what she says i will mention that to her hopeffully i can get some relief.  So there is tests tio show that it is actually urticaria ?  

       

    • wendy62425
      wendy62425 rose00110

      Posted

      Hi Rose

      i don't think there are any tests to determine Urticaria. There is a biopsy to determine if hive is vasculitis urticaria.  Usually a doctor can tell by examining hives....symptoms.  If more than six weeks suffering with hives they call it Chronic Urticaria.

    • rose00110
      rose00110 wendy62425

      Posted

      It startes 3 yrs ago for me with rashes only no hives.  The hoves only started  a couple mnths ago but is getting worse. Thanks for the info
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