Diagnosed with CIU but every antihistamine isn’t working??

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Hi all, so long story short i have had CIU for 4 years now. I was only diagnosed two months ago and was prescribed fexofenadine that does nothing even when i up the dosage, same with every other non drowsy antihistamine. Its driving me crazy and I get them every day walking to and from work, and then at work if im outside or too active (i work at a nursery so almost impossible to control) and everytime i come out the shower too. i feel like i cant do any exercise or go outside. i struggle to even have the heating on in the house incase i get them. They appear all over my body and its intensely itchy red hives. The doctors wont do anything at the moment because its not deemed serious during the pandemic (which i can understand) but its affecting my daily life. What can i do? is there even anything i can do?

Thank you!

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  • Posted

    I've lived with chronic idiopathic urticaria for approximately 11 years now -- I take 2 antihistamines daily (cetirizine in the AM, loratadine in the PM). This is my baseline (environmental allergies). I have had periods of hives that were intense for months, then completely went away for a few years, and I have no idea why. When I'm in the midst of a flare, the only thing that has helped me (note: not always), is getting on a regimen of pepcid (famotidine, usually 10 or 20 mg) daily, with benadryl (diphenhydramine) as I can tolerate it. The rationale is that pepcid blocks histamine-2, while traditional antihistamines target H1. With CIU, at least for me, it's rare that just taking a dose or two of these medications will take care of it right away. It takes a few days of staying on these meds to start to notice any changes. I have also had a little bit of luck with topical benadryl and hydrocortisone (separate topical meds) applied right to the hives, especially when I'm not in a situation where I can take sustained oral benadryl, though this can get annoying!

    I have recently started reading more about a person's ability to metabolize histamine, where some people have a reduced capacity for metabolizing (certain enzyme deficiencies can contribute to this). There are also some folks who follow a low/lower histamine diet, though this isn't necessarily mainstream/western medicine. There are many online resources describing a low histamine diet (maybe there might be some triggers there??) as certain foods contribute to high histamine levels, some encourage the release of histamine, some are low. This might be a consideration for you, though the most frustrating part of CIU is the 'I' (idiopathic) which may still lead to an unknown cause (after these 11 years, I still have no great cause, just something autoimmune related).

    I hope you can find a workable solution to your hives -- I know how frustrating this can be.

    Hang in there!

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