Discussions By Condition: I cannot get a diagnosis.

chronic urticaria(hives) & angioedema

Posted In: I cannot get a diagnosis. 21 Replies
  • Posted By: Anonymous
  • August 15, 2007
  • 07:16 PM

I have been getting the hives now for about 3 months, and my lip has also been swelling. Went to an allergist and he did an allergy test and a blood serum test, his conclusion was that my body is producing an antibody that is causing the hives and angioedema...so basically I am allergic to myself and there is nothing he can do about it. I take 2 zyrtec a day and a nexium, but it does not help, I have gone through rounds of taking predisone and it clears it up, but as soon as it is out of my system, the hives and swelling are back. I need help because this is absolutley driving me insane, should I get a second opinion, should I see a dermatologist instead of an allergist? I stay upset about it...praying, crying, and I know the crying doesn't help it but I can't help it. How can a person be allergic to their own body? Any suggestions would be helpful. I have stopped drinking cokes, cheese, lunchmeats because I read where these foods make your body make histamine, I will try anything to get rid of this.

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21 Replies:

  • Yes- I was allergic to my own histamines and to my own hormones!My problem is history!Please, please, please, try NAET, at naet.comand if you don't find anyone near by, at least try Bioset.This technique eliminates allergies - and it is permanent.There are many message boards in which people discuss how even eczema and warts clear out from the skin after doing several NAET treatments.NAET is a very new technique based on Oriental Medicine and Chiro, Nutritional Principles...if you want to know more email me rustyangel3000 at hotmail dot comBest.
    Eatafruit78 960 Replies
    • August 16, 2007
    • 05:57 PM
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  • Hi I suffer from from both of these diseases. I take randiditine and reactine in the morning and benadryl in the evenings. Unfortunately for people like us there is absolutely no cure for either disease only prevention for the hives but that doesn't always work. I find that when things get really bad none of my pills will work. My doctor told me don't have hot showers or baths as doing so aggrevates the hives and (I know from personal experience that it does) angioedema makes my upper lips swell and sometimes my mouth and my ears and eyelids. But I was told that basically I have to wait it out and the swelling usually goes down. But if it gets really bad and I have trouble breathing I bee line it for my local hospital. I don't risk it. I have learned not to panic when my lip swells but I do constantly monitor myself just in case. By keeping a mirror handy. With chronic hives they will happen for a period of time and then they may stop. I had a little over 2 years of dealing with them and then none for almost 2 years and since may this yr there back again. I had trouble with the past with hives and angiodema and a doctor that I know finally diagnosed me in july. As having both angioedema and chronic hives. So now I know whats happening to me. Some times both these diseases fustrate me and make me cry too. But please remember you are not alone and that I too know exactly what you are going through. My doctor told me that I would not die from angiodema but I don't quite believe him what if everything swells ( I had anaphalyxis reaction to a drug once and within a couple of minutes my face and mouth swelled up like a balloon I've been petrified ever sense. oh and before I forget. no we are not allergic to our own bodies. Our bodies make histimine and it binds sometimes for no apparent reason.
    Anonymous 42789 Replies
    • September 1, 2008
    • 06:21 AM
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  • I too suffer from chronic angioedema and hives.I have had hives since I was one month old. It is in my baby book. My mother had no idea that it would lead to this though. I have suffered from chronic hives that would come only twice a year. Every Spring and every fall and before every attack, I would have an severe upset stomach.. As I went to college, they hives cam e more often and more frequently. By the spring of 96..I started having my first angioedema attack. It started with my lip swelling and my back hurting. And now they come and go starting in February through till the first freeze(usually November). I just went to an urgent care to get an epi shot because I had left my epi pen at home. The attack lasted for over and hour. That is the first time it has last more than 15-30 minutes from start to finish. I take 1-4 zrytec a day, with 300mg of Zantac, Pulmocort turbo inhaler, flonase, doxcycline(for rosecea)then singulair at night with 2-6 benadrly (depending on how the day was) and rounds of steroids in between.This condition is only getting worse and it is robbing of me of doing things. I have more attacks when I go outside, so I stay in the house. I have put on a lot of weight and I am on steroids...It has taken over my life and I only work part time because of it and I was trying to become a photographer and I can't do that.....if you constantly have to reschedule because your sick no one will go to you....And there is no cure only control...that seems like a decent idea to me.
    Anonymous 42789 Replies
    • September 7, 2008
    • 10:50 PM
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  • I have the same symptoms as most of you...First began with my lips, then over time after every new reaction I'd get a new symptom. After almost 2 yrs of reactions, I am now to having swelling of the lips, gums, tongue, larynx, digestive tract (stomac very much included), my eye lids started swelling this past weekend (Dec 13, 2008) and I am pretty sure my brain is as well, because whenever I react I am a total space cadet and my brain feels tight!Anyhow, my reactions seem to be timed with my menses. I've been tracking everything and for the past year it's like clockwork. Also, I would have begun having these attacks only a few months after quitting a new birth control pill (I had been on Allesse for over 14 years and I was still getting heavy cramps, so I switched to Tricyclen Low). I had been on the new pill for about 4 months before the first reaction began in January '07. I quit the pill in Jul-Aug '07 when thinking it might be the cause... I went from Aug '07 to Sept. 08 without a reaction and since this past September I've been reacting every month like clockwork, adding new symptoms every time. My indigestion has increased dramatically over time... I've always had stomac issues... I'm supposedly celiac as well... Been on the gluten free diet for over 7 years now...Anyhow, I've had allergy testing twice and have had all the blood tests looking for all the obvious causes of these symptoms... all clear! All negative...So, like all of you, my docs say, you have Idiopathic Angioedem and you may have to live with it for the rest of your life...I'm sorry, but I know enough to know that that is not a diagnosis, but a description of the symptoms... I am not settling for this.I've been strong about this and I am not stopping until we find the cause and deal with it properly.I know for a fact that my stomac is a trigger... You may probably figure this one out too...I am also seeing a Naturopath, and we both agree that my digestion seems to be the key here and maybe hormones as well (too much estrogen... maybe). Anyhow, I am on a gentle diet a Chinese healing diet (heating and cooling foods - look it up). I am also taking a homeopathic anti-inflamatory for my stomac. I've just started this regime, and had a reaction a week into it, so it doesn't mean that this didn't work... I just need more healing to see if the stomac is the problem. My uncle, an MD, think it might be the gut as well...Anyhow, I felt the need to share this and hopefully I can encourage you to eat better and look further into this... don't accept "Chronic angioedem and Chronic Hives". I'm sorry that isn't good enough and it is not a diagnosis, sounds more like the docs are lazy. Be active with your health. Let's find out what's wrong with us! Oh, I should calm down, my brain is swelling....CheersJP
    Anonymous 42789 Replies
    • December 15, 2008
    • 09:30 PM
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  • 12/17/09 I was just looking up something else and ran across this page. ... I had angioneurotic edema on my lips a LOT when I was young - and frequently had hives also. . .I am not saying this is what you need, but it certain took care of my reactions. . that is, I went on something for my "NERVES" (which, as you know, are horrible when you are itching and stinging and swelling - looking so goofy) My last semester in nursing school was incredibly stressful and every night my rash came out on my legs from the knees down at about 9 p.m. I tried everything and so did the doc, with no help. . .finally he gave me a little blue pill. . I was too stressed to even look it up, but I took it . it made me so sleepy that I could only take it at bedtime but in no time I was free from this irritating problem. . maybe some Xanax or something would help to just take it a couple of weeks. If nothing else, it may put you in a more relaxed frame of mind - which we all know that nervousness and stress do just make it all worse!! good luck//tdr
    Anonymous 42789 Replies
    • December 17, 2008
    • 10:09 PM
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  • For those of you who have H.A.E.(hereditary angioedema,of which there are three types)you shouldn't expect any relief with steroids,antihistamines,or epinephrine,but the rest of you need to carry an Epi-pen(autoinjectable epinephrine) with you at all times in case your attacks involve your larynx or soft palate in your upper airway.In acquired angioedema,non-histaminergic, orH.A.E. types 1&2 tranexamic acid or epsilon-aminocaproic acid may be beneficial.
    richard wayne2b 1232 Replies
    • December 26, 2008
    • 01:33 PM
    • 0
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  • I forgot to say that cetirizine is prescribed for allergic angioedema& to avoid A.C.E. inhibitors(such as Vasotec)for those of you with drug-induced angioedema.
    richard wayne2b 1232 Replies
    • December 26, 2008
    • 01:43 PM
    • 0
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  • I had hives for 9 months and it was related to the depo privera shot. Not sure if you are male or female but this may help anyone out there. Several years later I had become a NAET practioner and have seen many different cases that worked well for them it is financially exhausting though but may help?
    Anonymous 42789 Replies
    • January 19, 2009
    • 07:52 PM
    • 0
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  • Hello everyone, I am usually not a blogger but I found this site because I am researching chronic hives. It all started last October 2008..I woke up one day with a swollen lip and hives all over my body. After freaking out, I called my doctor and he perscribed a one week steroid pack, Medrol, which worked at first. My hives disappeared. After taking the Medrol for the week, my hives came back..I saw an allergist,(tests were negative) rheumatologist,(test were negative for autoimmune disease) gastroenterologist (i had an endoscopy-still waiting on the results),dermatologist(biopsy came back positive for hives) Now I have a scar from the biopsy to confirm what I already know. It's ridiculous. My general physician told me to stick with the rheumatologist. Now, I am a guinea pig.. She has put me on Prednisone, Atarax, (which helped with the swelling and itching). But both gave me temporary relief. She then suggested Plaquenil and Colichine. I freaked out because these meds used for arthritis and malaria,which I DONT have. (but help to reduce swelling,which was her logic) She really wanted to help me get over my symptoms. Getting rid of symptoms does rid the problem, but adds to it. This has been a frustrating ordeal trying to figure out why the hives won't disappear. I never had hives before let alone all over my body and with severe itching and swelling. I tried acupuncture, naturopathic, and chiropractor.(which are holistic measures but very expensive to keep up). I've been on Prednisone and Atarax since last November. It never hit me that I may be allergic to the prednisone because when the hives came back they came back twice as much as twice as itchy. I read that allergic reactions to prednisone include mood changes, skin problems, swelling of the ankles, hands and feet, and HIVES!!!,bingo. My feet were so swollen one time I had to buy a pair of shoes one whole size up. Yesterday, it came to me like a ton of bricks, when I read that chronic hives are related to Depo-Provera. Going back before October 2008. I had my final Depo Shot in Sept 2008 when my GYN suggested I try the NuvaRing and wanted me off the Depo Provera. I was on Depo for one year by that time. My body is reacting to the effect of Depo that is still ravaging my system. I tried the DepoShot because it was an easy alternative to taking a pill every day. My biggest relief has been Atarax (for itching,but the strength wears away so I have to double and triple my doses at times). Benadryl and Zyrtec, which are histamine blockers,were not effective at all. Hives are cause by your body releasing histamine into your cells causing the redness and itchiness. The allergist suggested Zantac and Singulair, which are used for stomach issues like acid reflux and seasonal allergies, but block histamine production. Those didnt work. Basically, my body is off balance, between The Depo, all the drugs that I've taken, my liver, adrenals, stomach, and my skin are all affected. I'm slowly healing. It's been the worst 8 months. I'd say, listen to your body, and don't be afraid to tell your doctor, NO, if he or she offers drugs that doesn't makes no sense to take. (especially if these drugs cause more problems) The easy fix meds,are not always the way to go. There is always a better alternative. Always go the safest and healthier way. Eat better, drink lots of water to flush toxins out, and research all your meds before taking them. I hope my testimony helps.
    Anonymous 42789 Replies Flag this Response
  • Hey guys,I started getting uticaria when I was 15 and in high school. They did the battery of allergy tests, tested me for RA, Lupus, and all sorts of disease with everything coming back negative. They gave me about 10 different creams to try, and if anything, they either did nothing or made it worse. Eventually they put me on prednisone, which cleared it up. I've also had to go in to get shots of some kind of corticosteroid a couple times, once because it was bad, another time because I had a modeling job the next day and it wasn't bad yet but I knew it wouldn't be cleared up in a day either. After a couple years of this, and always having to fight to get prednisone because NO ONE wants to put a kid on that for a "simple little rash" (that if left untreated would start as dry cracking skin at the corners of my mouth, and ultimately exploid into what looked like a 2nd degree blistering burn across 75% of my face including under my eyes), my mom noticed I only got it when I was really stressed out (cheerleading try outs, kept up all night by stupid neighbors prior to ACT test, huge fights w/ my dad, etc.).For a couple years, exercise helped me manage my stress and I didn't get a single breakout of hives. A couple years later, I was in a car accident and ultimately put on long-acting pain meds. A couple of them (which I figured out after reading online) can cause that reaction, and one in particular, long-acting oxymorphone (Opana ER) made me get that at least once a week for 3 months. Prophylactic Benadryl also helped when I started feeling a bit itchy. I've got some uticaria under my eyes as I write this, unfortunately. :( Anywho, my heart goes out to you guys, who get it set off for various reasons as I do (and worse). I noticed that drinking a lot of water and managing stressed helped me A LOT with the management of mine. If I catch it early, I can get rid of it w/ just 1-3 10mg prednisone if I'm lucky. I've not been permitted to exercise for a couple years since my car accident, and it's definitely contributed to the frequency of it. If you've never tried exercise and filtering the crap out of your body with a lot of H2O, I highly encourage it. Also, keep a journal to help you make note of your flare ups. There could be some types of foods (like spicy ones), certain places (which could indicate actual allergies), or stressors that set off your flare ups. Hope this was at least marginally helpful. =/~KR
    misskr 17 Replies Flag this Response
  • HI - I am a 34 years old male and I too have been getting both diseases on and off for around 3 years. I get really bad hives from time to time and at least 7 times over the last 3 years had my lipshttp://kona.kontera.com/javascript/lib/imgs/grey_loader.gif swollen. One time I got hit by a ball and my lips and face swelled so bad that I was not recognizable. I have been taken benedryl & claraton over the last 3 years on and off. 2 days ago I woke up one morning and my lips were swollen. I started taking benedryl and it stubbornly did not want to go away. I took a total of 11 benedryls and nothing helped. I barely was able to talk. We called the doctor and he gave me a cordizone shot as well as some prednisone. It went down in 2 hours. I do not like the prednisone cause I think I get some side effects from it. I did notice that my lips always swell around 5am - not sure if thats a clue to anything. I also think that food coloring is the trigger for me. The night before my lips swelled, I had some candy and m & ms. I am stopping completely to eat junk food.I was wondering if anyone knows of a specialist (price does not matter) on this in the metro NY area. I have a great doctor now but would like to know if there is a specialist in the area so that I can review my options.Any info at all will be appreicated
    edrosenberg 2 Replies
    • September 13, 2009
    • 06:32 AM
    • 0
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  • I have been getting the hives now for about 3 months, and my lip has also been swelling. Went to an allergist and he did an allergy test and a blood serum test, his conclusion was that my body is producing an antibody that is causing the hives and angioedema...so basically I am allergic to myself and there is nothing he can do about it. I take 2 zyrtec a day and a nexium, but it does not help, I have gone through rounds of taking predisone and it clears it up, but as soon as it is out of my system, the hives and swelling are back. I need help because this is absolutley driving me insane, should I get a second opinion, should I see a dermatologist instead of an allergist? I stay upset about it...praying, crying, and I know the crying doesn't help it but I can't help it. How can a person be allergic to their own body? Any suggestions would be helpful. I have stopped drinking cokes, cheese, lunchmeats because I read where these foods make your body make histamine, I will try anything to get rid of this.HI - You posted this awhile ago. Did you get any responses? I have what you have. I do not think a dermatologist will help you. If anything these cremes making it worse
    edrosenberg 2 Replies
    • September 13, 2009
    • 06:39 AM
    • 0
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  • HiI have also been suffering from Chronic Urticaria and Angiodema for the last 18 months. I was told wrongly by my doctor and when referred by the hospital that I had an intollerance to salicylates (which naturally occur in a lot of foods- especially fruit), I tried to cut out all the food which may been high in salicylates, but this did not help.After missing being late a few times for the the depo-provera injection and then stopping taking it completely I have realised that it must be an ellergey to an ingrediant which is used in the deop provera injection.It was the worst 18 months of my life and I hope this can help anyone who may be experiencing the pain/confusion that I went through whilst not knowing what was causing this allergy.
    Anonymous 42789 Replies
    • November 23, 2009
    • 08:02 PM
    • 0
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  • [I have gone through the same thing. Lips, tounge, feet, eyes, it is so depressing. However, my dermatologist prescribed Allegra and it works wonders.
    Anonymous 42789 Replies Flag this Response
  • I am a 24yo female. ive had urticaria and angioedema with joint pain everytime i get a viral infection since i was a child. the incidences are getting farther apart but strionger in intensity includint hospitalization for iv steroids, pain meds. Ive seen a rheumatologist/allergist @ Vanderbilt with no results. neg/ RA, lupus.... I am going to MAYO nextmonth for some answers. i get severe angioedema, urticaria, itching, and severe joint pain. My father has RA so they think its autoimmune. I sympathize with everyone on here. I am hoping for answeres more than "idiopathic"...
    Anonymous 42789 Replies Flag this Response
  • I have been getting the hives now for about 3 months, and my lip has also been swelling. Went to an allergist and he did an allergy test and a blood serum test, his conclusion was that my body is producing an antibody that is causing the hives and angioedema...so basically I am allergic to myself and there is nothing he can do about it. I take 2 zyrtec a day and a nexium, but it does not help, I have gone through rounds of taking predisone and it clears it up, but as soon as it is out of my system, the hives and swelling are back. I need help because this is absolutley driving me insane, should I get a second opinion, should I see a dermatologist instead of an allergist? I stay upset about it...praying, crying, and I know the crying doesn't help it but I can't help it. How can a person be allergic to their own body? Any suggestions would be helpful. I have stopped drinking cokes, cheese, lunchmeats because I read where these foods make your body make histamine, I will try anything to get rid of this.A country doctor told me to take 1 zyrtec a day and ZanTac twice a day. I did this for several months and it really helped. I have had a little problem on and off for over three years, but I can handle a little swelling in the lip every couple of weeks, but no hives and the swelling lasts for shorter periods. I take a couple Benedryl at the first sign of swelling.. Be patient, it could take up to a few years to be completely free.....I know....
    Anonymous 42789 Replies
    • February 18, 2011
    • 11:14 PM
    • 0
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  • hello, i two suffer with the same swelling and hives. it started for me after i had my daughter 4 yrs ago, went to my dr. and told me i had allergies and sent me to see a allergist. after seeing him i tested possative to everything. he just told me to do allergy shots. not happy with his answers or understanding how someone could go from having no allergies to being allergic to everything, i went else where. finale i went to see an androcanoligist, who finaly gave me some answers, which you all know really are not answers. so now im on 2 180mg allegras, 2 20mg pepcids, 2 10mg zyrtecs, every day. and still have reactions. i feel like my body is just attacking it self all the time. it has affected my job and my life. i do hair and when i have a bad episode i am unable to work which means i have to cancelle my appt. no pay that day!!!! hoping they will find some meds hat do work. so i can get my life back. my dr. did tell me about this drug they are testing with that they use to treat severe asma cases that they have had possitive ressults with treating chronic urticaria & angioedema with no side effects. just waiting for the FDA to approve it . good luck to every one who suffers and god bless.
    Anonymous 42789 Replies Flag this Response
  • Yea I know how you feel, I been having to dealw ith this for a while now and let me tell you it's not pretty.But I learned to deal with it and live with it just like everything else.What I do advice that you do is to always make sure you are eating healthy staying healthy deining lots of water.That's what I do and it's been helping me so far :)Another great thing that I use is this great producthttp://bit.ly/lLml30I been suing it for a couple of months now and the results are fantastic, you should give it a try.
    Kick2011 2 Replies Flag this Response
  • Yea you could always try some medicine, but sometimes medicine makes it worse so I wouldn't advice it for the long run.Most of the time they have side-effects and those side effects have some too.So just know what you are getting into.You should try this great natural product that I been using for a while.It has stopped my urticaria problem and now I feel great.http://bit.ly/lLml30Try it out
    Kick20 1 Replies Flag this Response
  • Hi everyone I come across is blog when I was looking for some help with my problems I to have this horribly thing mine this Urticaria and Angioedema and I feel like it is taking over my life I have it every day upon all night scratching its starting to take its toll on me now at first it was a month here and there For the first 2 years now i have it 8 years and I am lucky if I get two or three days break from it can anyone help...
    Anonymous 1 Replies Flag this Response
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