Autoimmune urticaria: Chronic urticaria-My of my rope..

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At the end of my rope. 

I started getting hives in November for 2016. I thought, "whatever it will go away eventually." After having it for about a month, I went to the doctor. They didn't really do much. I still had it, went back. They put me on prednisone for about a week. It only started to really impact after the end of the week. After i went off, they came right back. I went back and said im still miserable. I went on several different allergy meds. All three tiers. The only one i found worked at all, fexofedine, and i used the highest dose on that. Still was miserable. Went back. Put me on a 2 week prednisone dose. They referred me to a dermatologist. Dermatologist took skin graph, confirmed it was hives. I was so angry because i thought we were going to figure out the cause not that they were hives, i knew they were hives! In this time I had a swollen lip that lasted a couple days and puffy face. A couple weeks later puffy eyes. After that i had them refer me to the only allergist in my state (i live in USA) The allergist put me on several medications and the high dose of fexofedine. It worked! For a couple weeks anyways.. Than my hives came back and full blown. All over my body.. itchy, burning.. so miserable. i cant sleep i have full time job and i am taking 3 online college classes... I am so overwhelmed and upset at this point. I went back to allergist. He said lets see if we can get you on xolair shots. But my insurance would have to buy and deal because the allergist doesn't. And i cant find any specialty pharmacy that will ship to Vermont that my insurance will deal with... Except one and my allergist is horrible, they are not on top of it, and its been three days they and they have not sent my information to that specialty pharmacy for them to proceed to see if they can send it or not.. (i will cover that in a minute!) In the mean time they essentially tell me to sit tight. So i do.. Miserable.. all the time.. Using ice packs at night so i can numb my skin. Using cream i got from the dermatologist that helps with the itch a bit, triamcinolone acetonide cream .1%. Using sleep aids. Using the high dose of fexofedine, Benedryl, and the two medications (one is allergy related one is dietary related, both from allergist). Even on this.. I get hives... Sometimes i scratch till my skin bleeds. Than one day i wake up. My lips are so swollen i can hardly talk, and my face is so swollen, my body burns and itches.. I had to call into to work, my first time calling in for this.. I called my allergist and they prescribed me methylprednisolone. It worked!! And i've been on that since. When i dont take it my hives come back. Currently im on a low dose. 

My allergist sent my pharmacy the wrong dose, quanitity and thougth they sent it in on a different date than they did... (like i said, they dont have it together at all, clearly) One nurse said to me i can be on the steroid one more week, than i go off because they dont want me on steroid long term. And we will "see how it goes..." My blood boils, i am so fed up with being miserable and the allergist acting like they dont care at all.... (Oh and another nurse said the quanitity for my pills was supposed to be 90 pills, 4mg, taking 4mg on even days and 8 on uneven days. WHILE the perscription bottle i got says and had... 10 pills... and it said "Take ten pills orally daily." MAN DID THEY GET THAT WRONG LOL And i verified with pharmisist that what they were sent was incorrect, it was. So now i am hoping the allerigst will fix it tomorrow so i can have my steroids back! 

Anyways i need help. 

Ideas?

I'm at the end of my rope... I just got through a major depression. And im glad because this is something that it making me go crazy and this is the exact thing that would put me over the edge. 

I have had bloodwork.

I have a bad thyroid. 

My bloodwork results were not horrible, but a concern enough to repeat the bloodwork months later (which is this month i will be taking my bloodwork again!) 

I am on no other medications other than the ones said here. 

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9 Replies

  • Posted

    You should find out what food/chemical your allergic to, with help of your allrgist. Then aviod that thing like its poison.
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    • Posted

      Thanks for the reply!

      Unfortunately, this is internal, my body working against itself. Blood work and my Allergist-immunologist confirms that it is internal, therefore an auto immune issue. 

      It is not the environment or something i eat or use on myself that causes it. I WISH this was the case and than i could get allergy testing, etc. It is not the case. 

      It can go away in a day or in 20 years, no one knows why people get it chronic hives from autoimmune issues. But they are just really unlucky people lol 

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    • Posted

      An autoimmune issue is also triggered by infections or even drugs/medications/chemicals. 

      It can't be just an internal auto reaction by itself. 

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  • Posted

    Hi theresareigna

    Obviously something your ingesting or are in contact with is causing the hives.....have you changed your diet recently or had a meal out that may have caused it or detergent... or using shower or bath products you recently bought or new makeup?...i can undestand you want the steroids because they take it all away, but long term steroid use will bring its own problems..its hard to get off them without bad side effects.......i do feel for you..best wishes...

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    • Posted

      Thank you for your time to reply!

      Unfortunately, like i was telling rocky, it is not environment, product or food related. It is my body working against itself, its internal- an autoimmune issue. So other than figuring out why my body is working against itself, which is usually next to impossible in most cases as it can be so many different things, its management. 

      I too had assumed it was environment or food related. But was reassured by he allergist and by bloodwork it is not. I wish that it was, so that i could just avoid it. Easy! 

      I agree and i told my allergist that i understand long term steroid effects. But they aren't giving me any other ideas to do after the steroids, which is what ticks me off. They just want me to remain in the same hell i've been dealing with. And i dont expect anyone to understand, unless they have been through it! 

      Also, I told my Dr. i should have some steroids on hand for when i get a swollen face, lips, eyes, etc. again so that i can bring down the swelling. 

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  • Posted

    Also you say it is autoimmune uticaria...have you had the appropriate blood tests to confirm this?...reason being you do not mention blood tests in your discussion.....
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    • Posted

      I would give the results but its at my Dr office, and i cant remember the numbers. I was tested for for things in relation to my  body working against itself. Which is why i have to get retested so soon.
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    • Posted

      Hi theresreigna

      The tests are usualy ESR, ANA and CRP

      tests

      Erythrocyte Sedimentation Rate blood test

      Anti-Nucleic Antibody blood test

      C-Reactive Protein blood test ...these are blood tests usually carried out for inflammation in the body....i.e Rheumatoid Arthritis, Polymyalgia Rheumatica, Lupus to name but a few... a dsDNA test is carried out for a definitive Lupus diagnosis.....

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  • Posted

    My mother had a similar problem for many years, she had to take an anti histamine called seldane. I don't know if it is still on the market. You could ask your allergist if there is one like it. It helped her and after many years of being on it the hives went away. Also, Prednisone can make your face puffy. I have been on it for 10 years now and I get puffy face when I go above 10 mg per day. I don't know what happened, but in her case it stopped one day and she no longer needed Seldane. I wish you luck with it.

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