Chronic idiopathic urticaria

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I'm a 24 year old female, in March of 2015 after a week of having a cold I woke up feeling better from the cold but covered in hives. I have quite a few allergies but didn't come in contact with any of them that I could think of. I took Benadryl, sure they would go away. After three days of the hives spreading and getting worse I went to the doctor, they gave me a handful of medication including prednisone as well as a kenelog shot. A few days later the hives went down, as soon as I got off the steroids however, they all returned. Over the next five months I tried montelukast, ranitidine, multiple doses of prednisone, hydroxizine, allertec, tons of Benadryl, Claritin and many others I can't even remember the names of. Over that time I had multiple doctor visits that consisted of telling me I should have used an epi pen it was so bad and my face was so deformed with swelling, I was prescribed epi pens and on several occasions was given Benadryl shots, kenelog shots and another shot I don't remember the name of. After many doctor visits and trying different medications to no avail, I finally got the hives to offer a little relief, after getting off an extended dose of prednisone and staying up on hydroxizine four times a day, Flonase two times a day, ranitidine four times a day and allertec four times a day. Finally I saw a specialist who recommended xolair after I tested positive to an autologous serum test. I am four months into shots and I have been able to cut back on some of the medication but when I have worse days I have to bump it back up. If I fail to take my medicine for a few days the hives, itching, facial deformation, facial, lip and mouth swelling all return. My Doctor said I should be feeling better by now with xolair and so I've scheduled an appointment with him next week. I'm feeling frustrated and discouraged that it's been almost a year of this. Any help is appreciated, what has worked for you?

Also I will try to add pictures later, I don't have any on this phone. Thanks!

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  • Posted

    Hi Hayley, sorry to hear you are suffering. It sounds really bad! I have had very similar since September so I'm 4months in. Unlike you I don't have any allergies and the hives/swelling came on rapidly completely out of the blue. My prediction is they were brought on by stress and my immune system struggling to cope. I had relief from prednisone but have read and been advised by doctor that they aren't the best for you. I paid privately to see an immunologist and had allergy testing which ruled those out. I was basically told I have chronic spontaneous ulticaria, can't say what causes it, but that it will resolve itself but they can't say how long that will take. I was prescribed Fexofenadine X 4 daily which hit it under control but still had flare ups with the swelling. While I saw specialist he told me about a chemical called Salicylate, naturally in a lot of fruit and veg, but also in artificial colours and preservatives, and beauty products. You can be sensative to this and as soon as I set eyes on the list of foods etc I knew that there were some that caused reactions in me. So got Christmas out of the way and started to test the diet, it has made a big difference to me and I have reduced to one tablet a day sometimes 2 depending on what I eat. Everyone's different so this may not help you at all (or you may have already tried it!) but worth mentioning. I couldn't believe how many things Salicylates are in and it has certainly seemed to help reduce my hives and particularly the swelling. Hope you find some relief soon. Lots of people on here mention diet playing a big role. Take care.
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    • Posted

      Thank you for the helpful reply. I generally eat healthy and I'm very active, because of my oral allergy syndrome I notice some of the lists of fruit I'm allergic to because of that allergy. However Like you said when I saw the list I immediately noticed a few that cause me to have bad reactions, especially chili flakes, chili oil, cayenne pepper. Thank you for sharing, I will definitely try tweaking my diet!
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  • Posted

    I had angioedema/hives on my arms. It would come and go daily, even with daily doses of cetirizine. I started taking Quecertin and luteolin daily. Flavinods that calm mast cells so they dont release histamine. I get the odd very small patch but Im pretty pleased with the results. If I come off them I slowly get more hive attacks. I found Dr theoharide's youtube videos and he sells this combo as NeuroProtek.
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  • Posted

    Hi Haley

    You've gone a long time with CIU and must be feeling absolutely horrible.  My trigger was 'leaky gut syndrome' and once I had started on using L-Glutamine powder, high density probiotics, strong multivits tablets and being careful what I ate (I can give you further details if you want). My specialist (I'm in the UK) put me on cyclosporine which is an immune suppressant for 6 months, plus doxepin which is an anti-depressant with antihistamine (I am reducing the mgs now to come off it), fexofenedine 180mg mornings and loretedine in the evening. Worked for me.  I know the cyclosporine worked for me plus the leaky gut regine was what worked.  Everyone, like you said is different, but the leaky gut is worth you looking into.  A friend of mine from this site has been on a lengthy prednisone treatment plus cyclosporine and she has had some relief and is now reducing the medication - we both hope it works for her.  Goodluck

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