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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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  • amey793
    amey793

    Posted

    Well I went to dermatologist today... I have been referred on to dr sabroe to discuss omalizumab.. In the mean time they've increased my ciclosporin (I've been on this dose before but been brought down) so now on 150mg in am & 100mg pm.

    I'm going to watch this programme that everyone's on about!! X

    • wendy62425
      wendy62425 amey793

      Posted

      Hi Amey

      i heard from a dear friend that Dr, Sabroe is a very good doctor. I went up to 100mg of cyclosporine in the morning and 100 at night and am on a slow taper of prednisone and have been on 5mg of prednisone for several weeks...just went down a couple weeks ago to 100 mg cyclosporine and am still hive free. Slowly trying to go off meds..doctor is hoping for remission....I pray!

      best,

      Wendy

  • amey793
    amey793

    Posted

    Well. Another horrendous night, I've not had 1 full nights sleep in 2 weeks now & I feel terrible. Got a migraine this morning. 😞
    • wendy62425
      wendy62425 amey793

      Posted

      Oh Amey

      I am so sorry to hear that....I get my migraines too and I cannot imagine having both at the same time...I just commented that to my husband the other day when I had head issues due to weather changes....could not imagine suffering with hives with it!!

      Amey, adding the prednisone very slow taper to the cyclosporine made the difference!! I cannot remember what mg they started me on ( wasn't too high) then went down 1 mg less each week until I got down to 5 mg and I have been on that for several weeks.  I have been hive free for 5+months!! I am currently down to 100mg cyclosporine.  Not sure if I will go down to 4mg prednisone first or go down to 50 mg cyclosporine next.  Please ask your doctor about this.  It was the ONLY thing that worked for me Amey for quality of life....sounds like that is what you need.  Then if all goes well try natural ways after.  If I already mentioned L-glutamine and Quercetin....Google those for chronic urticaria and healthy clean eating.

      keep me posted.......feel better!

      Best,

      wendy

    • desmond01416
      desmond01416 wendy62425

      Posted

      Wendy, are you taking something like calcium to mitigate the effects on your bones of long-term low-dose steroid use?
    • wendy62425
      wendy62425 desmond01416

      Posted

      Hi Desmond

      i just found out that I have osteopenia after DEXA scan and I did lose some bone loss.  Sure wish doctors would recommend such things like calcium.  I have Citracal with calcium citrate that I will take more faithfully!  I think the doctors focus on getting us hive free for quality of live but they need to warn us about our bones etc.  thank you for asking about that!  I also need to excersize more!

      wendy

    • wendy62425
      wendy62425

      Posted

      Hi Amey

      How are you?  Were you able to see Dr. Sabroe months ago?  Was she able to help you?  If so what did she recommend.  Just checking in to see how you are.i hope you are well.

      Wendy

  • irishcree
    irishcree amey793

    Posted

    Hello Amey

    What about UVB Light Therapy. I have been going twice a week for almost four years.It starts at 12 second sessions and gradually increase. It is covered by our health care in Canada.

  • irishcree
    irishcree amey793

    Posted

    It helps me...when I have stopped the treatments I am itchy the minute I start moving around in the morning. I see a group of doctors including the main doctor who handles my case every four months. They have asked me all sorts of questions, do I eat a lot of maraschino cherries, or blue cheese. They take photos of my fingernails. One doctor manages how I am reacting to meds, side effects etc. Anyway at one these meetings a doctor suggested UVB light therapy as a shot in the dark and it definitely does help. In regards to bone loss from prednisone I take 10mg. ALENDRONATE daily. It is a bone metabolism regulator.
    • wendy62425
      wendy62425 irishcree

      Posted

      Hello Irishcree

      looks like it's been 6 months from posting.  How are you doing with the hives..hopefully they are gone. Are you still doing the UVB light therapy also are you still in the Prednisone?

      hope all is well.  Please keep us posted.

      wendy

  • irishcree
    irishcree amey793

    Posted

    I have been told not to eat foods that are high in histamines.....aged cheese, yogurt, sauerkraut, processed meats, anything pickled are a few. Google high histamine foods. I don't know how much or if it is helping at all, but I try anything at this point
  • matasha2007
    matasha2007 amey793

    Posted

    I am not in the UK but i have been on xolair for 1 year now. When i started the injections i wasnt experiencing an outbreak. But, for the past 6 months and 30 additional pounds from the prednisone, this has been my worst outbreak yet. And, i have been dealing with CIU for almost 13 years.
  • rose00110
    rose00110 amey793

    Posted

    Ive been suffering from this for almost 3 yrs also but with no diagnose yet very hard to live with specially when you have to work.  Some days i feel like im going to have a nervous breakdown.  Like you anything i take works for a few days that's it my itching is always worse at night.  Seems like the more i work on it it's getting worse.  Im going to see a immunologist hopeing for a diagnosis.

    • hanneke54158
      hanneke54158 rose00110

      Posted

      Seven weeks ago I had my last Xolair injection of a 6 month course ... and without jinxing it, so far the hives haven't returned! They cleared up after the first injection and I've had a blissful 7 months but with the daily fear of their return!! Each time I feel an itch I panic ...

      I can't take anti histamine (allergic to this) so I'm really hoping they don't return as I had them every day for two years. I apparently have chronic spontaneous Urticaria with no known cause ...

    • wendy62425
      wendy62425 hanneke54158

      Posted

      Hello Hanneke

      so happy to hear that the Xolair has worked for you even from the beginning!  That is great!  Please keep all of us posted.

      Have a great day!

      Wendy

    • rose00110
      rose00110 wendy62425

      Posted

      Im hoping for something like that would be so great can you eat anything you want though or do you still have to watch
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