hives and xolair

Donal 

I think Ayda makes some good points. I had always had Asthma, which worsened with age. It got much worse, going from mild/moderate to moderate with severe attacks after my mother died in my early twenties.

I didn't know what it was as the time, but Urticaria came on after being knocked over by a serious Winter Flu after an intensely busy period of my life, working part-time in Manchester while commuting to study as a mature student full-time in York. After a couple of years of that, my body started to slowly breakdown. In hindsight, it started with random little infections that I should have recognised as the beginning of exhaustion. Constant sore throats and sinus infections, stomach upsets (one severe gastric infection that did me in for 6-months), fungal infections (Tinea, Athlete's foot etc...), worsening asthma and chest infections.

Eventually, after setting myself up for a fall, that Winter Flu knocked me down. That was after completing one extremely demanding project in the Autumn and Winter after a whole Summer of commuting with work. After a month or so, I had recovered from the Flu enough to go outside for a walk on a bright crisp cold February day. After walking by the river for half and hour I began to get intensely itchy, especially on my hands and whole head area. My wife noticed that I was covered in what looked like kettle burn or severe nettle rash on my extremities, face, ears, neck and so on. At the time, we put it down to food allergy as I had eaten a pastry with nuts in it. After allergy testing came back with very high IgE levels and multiple allergies. 

After a few months of severe Urticaria and insomnia 5 nights of the week, I was at my wits end. Doxepin helped initially. For the first two years we put it down to environmental and food allergies, not helped by being referred to an immunologist who was only a trainee. His incorrect diagnoses led to me receiving poor treatment for a number of years before we eventually paid to consult a really good immunologist privately. Then I started to receive appropriate treatment with high-dosage antihistamines (didn't work), Ciclosporin (worked but knocked me over with fatigue), Mycophenolate (worked but nearly killed me by suppressing my immune system so much I caught multiple serious infections. 

Finally, I did find a treatment regime that worked for me. That is Gabapentin for the itch (for neuropathic itch, rash itch, insomnia, anxiety, stress), menthol gel (for itch), UVB (helps down-regulate the immune response), regular meditation (mindfulness-based stress reduction MBSR), diet (giving up alcohol, caffeine, replaced factory/processed food with food all home made from raw ingredients), psychotherapy (for grief, trauma, illness management) and staying warm with most of skin covered and out of the cold (gave up running, swimming for indoor exercise in colder 6 months of year. It's been a long 5-years of suffering. But with all of the above, my cold urticaria and night-time pruritus and insomnia has finally settled down.

I would try Xolair if I could afford it. I am considering trying Dapsone or Sulfasalazine if it re-occurs later in the winter or if it spikes again when UVB treatment stops. Immunosuppresants just made me too ill to consider trying Methotrexate.

Physical and psychological trauma were both major factors in my case, and the two reinforced each other getting me into a nasty vicious cylce. And I suspect there are others with Urticaria that are similar.

Hi,

Narrowband UVB treatment is a light radiation with ultra-violet rays. Under the care of a specialist dermatologist, you attend a clinic a couple of times a week and receive a steadily and slowly increasing exposure to this light, standing up in a big machine. 

Once you get past the first month or so, when the dosage isn't high enough to help, things can get better. You tan over time and even get very mildly pink afterward and get slightly dry skin (but Eucerin or Aveeno sorts it). But the redness settles down by the next day and for me and others has a good effect in sorting out Urticaria or Psoriasis symptoms. It down regulates the mast cells, decreases the rash and itching and does other helpful things.

You can't get this treatment for ever. But it is a very useful intervention to have, like steroids I suppose, but less harmful.

Zolair worked for me right away but after 6 months i'm starting to have yeast infections one after another that is the only side effect i'm having so far .