hives and xolair

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I have had two shots of xolair and the first set seemed to work but this second set i have huge hives on my legs and am very itchy.. I see some ppl who take xolair are helped immediately and some it takes a longer time... For those of you who have had xolair and it didnt work right away , how long did it take.. I dont want to take this shot with all the side effects if i have no hope it will work.. I had hives in my 40 when pregnant they left never came back for 29 years now they are back with a vengance..

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  • Posted

    Hi Jana;  I just had my third set of injections about an hour ago!  My first set of injections did not show much sign of improvement at all.  My second set DID.  I had only one bad breakout the past month and it was just this week-end before getting my next set of injections.  I have no ill effects from the injections.  I am totally pumped about them and so thankful to have finally found something that works.  I would encourage you to at least give it two months of injections to see if it works for you!  Best of luck!  

    Donal 

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  • Posted

    I have had 2 courses of xolair shots and can say that both times i have reacted the same. The first month hardly any symptoms and the more i was having the less effective they were becoming. I suffer a lot with painful swellings affecting my hands and feet the most. I have delayed pressure urticaria and spontaneous chronic urticaria and had this for over 8yrs. I have tried so many meds ranging from methotrexate, cyclosporin, capstone, etc etc. None have worked. Noticed that my condition got worse about 6 yrs ago when I had a back operation think it was trauma to my body that started it off worse. Has something happened to make yours worse? It could probably be something mental as well as physical.
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    • Posted

      Hi Ayda I have been wracking my brain and the only thing different is we moved from arizona to alabama and I am hoping and praying it is not Alabama as we love living here.. I think I have stress the same as lot of people but nothing everyday .. something to think about tho.. thank you Jana
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    • Posted

      Hi Jana.

      It is said that Moving is a stressful time even if you feel there were no big problems at the time. It's a change obviously not as obvious as other stressful moments ie grieving, losing your job, etc. This condition is definately complicated to treat and I feel it is trial an error. What works for one person doesn't work for another. If I didn't have a positive mind and a glimmer of hope this condition can bring you to some dark places. Sometimes for a split second I think I'm 'normal' then I am bought back to reality. I dream of wearing heels and any clothes of my choosing and go anywhere without worrying about having this crap take over my life. Wishing myself and everyone a solution and hoping we all get back to Normal before this stupid condition took over our lives.

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    • Posted

      I am just so frustrated it is the not knowing why they came back and just will not go away.. and taking so many antihistamines give me very bad gastritis so i have to watch when i take them..I hear you about clothes as sometimes i am ok others i get so warm i start to break out like crazy.. I am thankful i do not work as i would have been fired.. and when the angioedema comes on and my face is so swollen it is awful.. these are the times i add prednisone.. I m afraid to travel so i guess i will let the dr order the epi pen.. this is not a cheap condition thats for sure.. I feel for everyone who has them..  I do remember now i started itching like crazy about two years before i got these.. I have tried gabapentin it used to work but then stopped so it seems i am trying something new everyday.
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  • Posted

    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.

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    • Posted

      Hi Desmond,

       Ihave tried some of the drugs you mentioned and the xolair i have had is a sample as the company has not approved me yet so I may not be able to continue if they dont as the shot is 2400.00 and no way can i afford that once a month.. But my allergist is hopeful they will approve it so they are giving me the samples for now.. I do need to make an appt with a dermatologist so will be speaking with her about what you have said about  the UVB treatment.  Thank you so much for all of your information, I hate we all have this but on the other hand i dont feel so alone now..

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  • Posted

    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.

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  • Posted

    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 .

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  • Posted

    Yes, I think probiotics and prebiotics (raw leek, onion etc...) help. You can buy powdered arrowroot to add to porridge. I just add a teaspoon or two and mix in with coconut oil, nuts and lots of fresh berries.
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