Chronic Urticaria and angioedema, every single day for the last year and a half

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Hi, I have been suffering from spontaneous chronic urticaria and angioedema every day for the last year and a half. I have tried treating it with different antihistamines with different dosage, with steroids, and now I have started the Xolair (Omalizumab) treatment. Next week I will have my 4th jab.

So far I have had no relief whatsoever and I am madly scared this treatment won't work either. I have been very patient so far, thinking that this treatment would miraculously make it disappear, but now that I can't see any improvement my mental health has been deteriorating drastically.

I don't get enough quality sleep at night, as I spend most of the time scratching. I can't walk, or even stand up for long, as my feet, ankles, legs and knees swell and itch like crazy after a short time. Because of this I can't even do basic housekeeping without suffering for it afterwards.

I can't wear normal clothes, not even a pair of socks or a bra, because the pressure on my skin will make the urticaria much worse.

I have been following a low histamine for over a year, and if I indulge myself and eat even a bit of chocolate the consequences are quite severe (it's not food related allergy, because I have tried even fasting for 4 days, and eaten rice only for 4 weeks).

I can't even shave my legs, because it irritates my skin even more. Most days my face is also monstrously swollen, and I am extremely self conscious about it.

This problem has destroyed both my social and private life, and since I can't even go for a walk I have gained so much weight! I feel I can't bear more, I feel hysterical and powerless.

The only good thing in all this is that I have a job that allows me to work from home. If this had not been the case I can't bear to think of the consequences.

Is there anyone else here who has experienced the same? If you have had Xolair treatment, did it work? If it did how long did it take? I really need to know if there is someone out there that gets what I'm going through.

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1 Reply

  • Posted

    Speak to your GP about an alternative. Its best to take a weaker medication for a longer period, than to take a strong medication for a shorter period.

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