Going crazy

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Been Dx with chronic hives. Have had for 3 months non stop! After a million tests, and meds, bendryl is the only thing that helps. Steroids knock it down but have had to many for now. I've noticed if I eat or drink foods with gluten it flares up the itching all over face, mouth, etc. when I stay gluten free it actually tends to be better. Negative for h pyhlori, allergy test on skin was negative. It's like being allergic to yourself!!! Glad to join the group I don't feel so alone now!

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  • Posted

    Wish they would do more tesearch and we would'nt suffer so much I feel your pain im going crazy myself but me it's not in my face but everywhere else and i feel like i would have to live in a bubble ive had this for 3 yrs and this year is the worse looking for answers but there does'nt seem to be any. Hang in there you might be one of the lucky ones and it will go away stay positive i'm sure we will have a end to this terrible desease.

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  • Posted

    What type of tests did you get done ?
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    • Posted

      I've had blood tests done, hpylori, thyroid, allergy skin tests and allergy blood work. Thyroid antibodies elevated but still functioning. Immuniglobins are severally low, and CU Index low positive. So call it chronic urticaria due to autoimmune. Being followed by the University of Michigan hospital. They say could last up to 10 years! Have good days and bad days. For 1 good day, I get 2 bad it seems. Completely has interrupted my entire life.

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    • Posted

      R u on meds for it though when you say ten years do you mean with rash and hives.  Can you eat normal or do you have to watch everything you eat yeah it sure does change your life 
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    • Posted

      They say it can last 6 weeks to 10 yrs with hives, rash, or just being very itchy. Will come and go.. stress, illness, over heating or extreme cold will bring it back on. Yes I was on steroids last 3 months, on and off. Have had max dose of those for 3 months so have to only use in emergency. I take bendryl 1-3x a day depending on how bad I am. For H1 and Pepcid 1-2x day H2, they have added Zyrtec to replace bendryl if I was getting to sleepy. Don't care for it, some say it works for them. I use the bendryl.

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    • Posted

      I also try to eat gluten free right now. I've noticed if I eat it I flare up. They say that's common.

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    • Posted

      Yes it is im allergic to practicaaly all food i can't eat wheat dairy sugar tomato products some fruits so it makes it really difficult to go eat at restaurants that is one of the nice things my hubby and i used to do we still go once in awhile but its not the same 

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    • Posted

      Yes I understand! I've had all kinds of problems with foods I never did before. So it's definitely hard to eat. one minute I'm fine with something, next I'm not! It's like I'm allergic to myself! And yes it does hinder on all aspects of my life now. Discouragingsad

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  • Posted

    I feel for you .......

    Having just one little patch on my forearm to spreading everywhere daily for 10 months of Chronic Urticaria and Angiodema.....fingers crossed it's under control

    With

    720mg Fexofenadine

    300mg Ranitidine

    100 mg Dapsone

    Montelukast

    Also taking levothyroxine for my underactive Thyroid which I thought was the cause of it to start with

    Seems I'll never know......back to the immunologist in December for a check up ....

    Don't know what'll happen if I come off them hoping that it's abated only time will tell .....good luck and wishes to you though 🙄

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  • Posted

    get your thyroid checked as well (not the basic thyroid blood test, but the other one, I can't remember the name) since I've started taking meds for my thyroid the situation seems to have gotten better, it's not completely gone but it has improved.

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    • Posted

      Yes I have its ur thyroid anitbodie test. Which is elevated and they said I'm possible going into Hasimotos. So they are keeping an eye on it! And I've lost 20 lbs in 8wks sad

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