Chronic Hives-negative blood work

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Hey everyone,

Hoping to find some help. I started getting hives about 2-3 months ago. Before getting them I got sick. Then I would get 1 on my upper arm about once a week. It would last 3-4 days and fade. The next week another one would pop up. The third one I got ended up blistering so that's when I went to a dermatologist. He did 2 skin biopsies and blood work. Both skin biopsies said it was an allergic reaction. The blood test came back negative for autoimmune diseases and my thyroid was fine. I dis find out I'm allergic to wheat, however, it the number barely makes it allergic. The dermatologist eventually told me there was nothing he could do or tell me and told me to take antihistamines. They seem to have gotten worse. Some weeks I get one and other weeks, like this week, I got 7. They are all on my upper arms. Maybe once or twice I had 1 on my foot and 1 on my belly. The only thing high on my blood test was my C Reative Protein. The allergist I seen said she couldn't do anything because the dermatologist did all the blood work and the allergic reaction to wheat is so small she doesn't think it would cause hives. I can't figure it out. An no one else can either.....its frustrating to say the least.

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  • Posted

    Hi I have had hives now for seven months and have had every blood test you can think of.. no one knows why.. but my hives cause angioedema at times which has landed me in the er .. I never have just one or two i have them all over my legs or all over my entire body.. antihistamines did nothing , prednisone did but you cant take that all the time so now i am taking a xolair shot which is for asthma which they found also works for hives.. I still have to continue my antihistamines until we see if after six shots this stops them.. I have had 4.. so I take benedryl at night and sometimes either allegra or claritin in the morning .. I do not take as many antihistamines as i was cause even the shot is cutting them down.. hopefully yours will just stay at a few.. I did go gluten free for a while and they seemed to go away.. then i started eating gluten again and here they came again.. So i am trying really hard to stick to gluten free again and see if that helps.. they cant do any allergy testing until i am hives free for three to six weeks with no antihistamines at all.. I will say three drs told me i may never find a reason as most do not ..   good luck i hope you find out why it is very frustrating ..
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    • Posted

      Same here they told me six months but i’m going on 9 th month now i think i will be on it for awhile still. Besides the shots i take 4 antihistamine every night so i know i’m not cured. 
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    • Posted

      I first got the hives three years ago after my first flu shot but did not make the connection. The itching was all over but no rash so doc thought I was crazy. The second year, second flu shot - hives were big white bumps and itching. The third year, third flu shot - hives broke out head to foot and were vicious with a couple of blood blisters and red bumps and swaths of red here and there and horrible itching sometimes feels like picking with fine needles when it starts. It's been hell. I have to take so many meds to keep them down. Does not even stop them completely. No idea how I'm going to get rid of the mercury. I looked online and picked up cilantro and some other foods they say. Waiting to hear what my doctor says.

       

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  • Posted

    Well I’ve been diagnosed with chronic autoimmune hives. Been almost 2 years now. Matter of fact I was doing pretty good just itching a lot and last night got raised hives on hands and feet! It’s fustrating to say the least! I take Benadryl almost everyday, and about every 3-6 months I get a steroid shot. Helps keep it u see control. I changed my diet to gluten free which helped a lot! I can tell you alcohol definitely triggers it for me . So try to keep that to a dull roar lol... I see a autoimmune immunologist at U of M hospital and she’s did a lot to help me but unfortunately it is chronic and comes when it wants! But besides all the meds.. from every allergy pill known Benadryl and steroids help me the most. Good luck to you! 
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  • Posted

    Don’t suffer a long time like i did ask your doc to go see a immunologist. Nobody could figure out what i had either i had all the blood test under the sun  i ended up having to get the zolair shot and now I am 90 percent better. 
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    • Posted

      Hi Rose 

      How many xolair shots have you gotten?? I have had four and i still get hives.. I was told to continue my antihistamines , did you do that also.. thanks Jana

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    • Posted

      Hey Jana94738,

      I've been getting Xolaire shots (9 or 10 now) since May 2017, and I don't think it's doing a darn thing. I also take Plaquenil, doxepin, hydroxyzine, ranitidine, certrizine and levocertrizine, allegra and montelukast, and prednisone. My allergist said that while I'm still on the prednisone taper, I should continue to take Xolaire. I am in the drug maker's $5 co-pay program so the drugs are affordable. My body is doing everything it can to break out in hives and as far as I can tell, I can get hives immediately or delayed from multiple products (food, preservatives, additives, and fragrances). We think, it started from taking daily and as needed aspirin for cardiac protection and pain relief (it worked well for my aches and pains) for years. I stopped it months ago, but once the body starts down this allergic path, it's difficult to stop. I hope this year is better; I plan to keep the prednisone side effects down through diet and exercise.

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    • Posted

      This is frustrating not know what is causing them .. I am like you it seems my body just wants to break out in hives.. I hope this year is a better one for all of us with this problem..I think you are correct in saying once we go down this path it is tough to stop.. do any of you have an epi  pen?? I may be going on vacation in april and I am scared of not having one cause last year i ended up in er when i got them on the road for no apparent reason..
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    • Posted

      For me my first injection made a big diffrence.  I’m on my 11 th one plus i take 4 antihistamine every night and I still get bad itching on my sides and under my chest i have trouble wearing a bra. It’s been much worse lately because i ate to much junk during the holliday but i‘m telling you it is a very difficult problem to live with. I’m thankful its not as bad as before but it could be better. I wish you all the luck. Keep trying until you find something that will work for you. 
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    • Posted

      Hi yes I have several Epi pens. If ever needed pray not, 1 pen will only work for 10-15 mins so my Dr makes me carry 2 at a time. I travel a lot and where I live it’s very secluded. So always have to in my purse, 2 in the House... 
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    • Posted

      wow i thought they lasted longer than that.. we are going on a trip in april and lots of empty land with nothing around so if it only lasts 15 mins that is not good and kinda scarey.. did your insurance pay for them that is another thing they are riduculously expensive and only have a shelf life of one year..

       

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    • Posted

      Yes you need with travel. I actually have 6 pens all over house , purse, etc.. the traveling we do and living in the outskirts she said no one I could be without one! Never have had to use thank GOD! Yes my ins paid for them. I had a copay oF 10$ a piece I have BCBS but you can always check with your provider. Since my Dr wrote IT IS A LIFE SAVING MEASUREMENT for me they covered it no prob. Good luck to you! 
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    • Posted

      Hopefully you researched the need for an Epipen w/Xolair online. I cut & pasted the following from an Expert physician response, Dennis K. Ledford, MD, FAAAAI, on The AMERICAN ACADEMY of Allergy Asthma & Immunology website.

      “Patients should remain in the physician’s office/medical clinic for at least 30 minutes after receiving an injection, but longer waits are reasonable, as directed by the physician. Some physicians might request that patients considered at increased risk of a serious systemic reaction outside of the office/medical clinic carry injectable epinephrine. These patients should be instructed in the use of epinephrine to treat a systemic reaction that occurs after they have left the physician’s office or other location where the injection was given. The risks and benefits of continuing allergen immunotherapy in patients who have had a severe systemic reaction should be carefully considered.”

      “Summary Statement 36: Several large studies demonstrate that life-threatening anaphylactic reactions after the first 30 minutes are rare. Delayed and biphasic immunotherapy-induced systemic reactions can occur outside of a supervised medical facility. Thus patients should be educated regarding the possible signs and symptoms of systemic reactions and to contact their health care professional or seek emergency medical attention, as indicated. The decision to prescribe epinephrine autoinjectors to patients receiving allergen immunotherapy is up to the physician’s discretion and is based on a number of considerations. C At the onset of immunotherapy, patients should be counseled on the possibility of immediate and delayed systemic reactions during risk communication; an action plan for such an event should be discussed. In the event of a delayed systemic reaction, the patient should be counseled on appropriate treatment based on their symptoms. They should be instructed to contact their health care professional or seek emergency medical attention, as indicated. After a delayed systemic reaction, the physician should evaluate the risks and benefits of continuing immunotherapy; consider some treatment modifications, such as a longer wait period; or both. The length of the longer wait time will depend on the clinical history of the delayed systemic reaction. Physicians might also want to consider prescribing an epinephrine autoinjector to treat such future reactions”.

      The task force report in 2007 was a result of reports of anaphylaxis and limited experience at the time. I think the delayed reactions, the greater risk of anaphylaxis in subjects with persistent asthma and the limited experience with omalizumab at the time lead to cautious recommendations. However, the report in 2007 provides latitude for physician judgment (Cox L, Platts-Mills TAE, Finegold I et al. American Academy of Allergy, Asthma and Immunology/American College of Allergy, Asthma and Immunology Joint Task Force Report on omalizumab-associated anaphylaxis. J Allergy Clin Immunol 2007;120:1373-77):

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    • Posted

      yes i have read all the information about the anaphylaxis and in fact have had it before the xolair shots.. my last allergist would not let me have an epi pen as he said i have high blood pressure.. which is controlled and i have quit going to him .. Now my new allergist said i should have one.. But i have not gotten one yet..  Do you use one??
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    • Posted

      Hi again,

      I've never used an Epipen for any reason, and chronic urticaria is not considered life-threatening. It's used in the rare instance of anaphylaxis or trouble breathing particularly in an asthmatic patients status post treatment with Xolair. It's a safety/emergency drug only, and it requires the person to go to an ED or call 911 immediately after use.

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