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530191 tn?1214162811

Autoimmune urticaria anyone?

Looking to make friends with others who have autoimmune urticaria and share stories, symptoms, food for thought, etc. Anyone game?
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Avatar universal
Does anyone here  with AU experience burning scalp with hair loss?
Helpful - 1
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Avatar universal
YSI
My story began in my mid 50's. I initially believed I had a skin infection being recurrently passed on to me (most photos on the internet that matched my skin were of staph infections.) Over time I realized my trigger was cold, applied directly to my skin.  Every morning at work for 30 yrs I would buy a plastic bottle of pop from the food kiosk (plus a donut lol) and, hands full, take it back to work cradled against my bare upper inner forearm. I did this for many years with no ill effects.  Then all suddenly changed. I would begin to feel a very light tingling only in that spot, which turned into a light urge to itch.  Scratching smooth skin with no visual clues would instantly cause a million tiny bumps to ripple under the skin from elbow to wrist, and then, with insane itching and more scratching, emerge, erupt, weep, dry, scab over, and eventually disappear with no scarring or visual evidence-this process took 6-8 wks each time-if it was summer I would be wearing long sleeves at work to hide the ugly skin.  After this occurred 3 times on my left forearm, I switched arms once without thinking and it then occurred on my right forearm. I had a patch on my right calf where I had clenched a plastic gallon of milk for a moment.  I had a tiny patch on my upper inner right breast, again from momentarily balancing a cold bottle, while wearing a v-neck top.  Once the penny dropped, I avoided placing cold items on my bare skin. I 'forgot about it. When recently I was having an upper leg issue, my mother hauled out an ice pack from the freezer. The onset is never instantaneous so it took a bit to realize reoccurence on my upper left leg was not part of my injury but was yet another manifestation  of cold urcticaria. Quite honestly as a lifelong lover of swimming I am afraid to get in a cold water pool.  Hot showers are my joy, now.
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2 Comments
Delayed contact chronic urticaria usually follows an injury or infection. It turns on the immune system which then goes into overdrive and doesn't know when to stop. The result is inflammation that appears wherever contact happens. If you haven't talked to an immunologist, you should. Xolair may be a choice that works for you. It has for my wife for these past few years. She is on minimal dose now and takes one injection between 3 and 4 times per year. Hope this helps.
YSI
Thanks, injury/infection has been the story of my life. Swimmers ear/lots of penicillin in childhood. UTI/Bactrim every year for 10yrs from age 20-30-stopped getting them when I passed grit. I became positive on the TB puncture test in my 40's-exposure presumed to be the very nice Vietnamese man who emptied my wastebasket each night and we chatted. I caught measles from the MMR-massive lymph nodes on top/back of skull, behind ear, and under chin. I developed large white hives on back of upper arms and tiny blood blisters on calves when taking Bactrim for URI (long after the 20's UTI's.) Lymph node popped out on my neck when I broke my little toe/sprained ankle-go figure! Large soft grape-sized lymph node popped out at base of right buttock following bus accident where I landed on left hip and then bounced skull off the floor of the bus. I have many old fillings in teeth-dentist has offered to replace but never suggested they SHOULD be replaced? I am leery of modern meds given how many problems I have with reactions to meds including OTC meds.

With the popped out lymph nodes I usually make a comment that the turkey is done lol.
Avatar universal
My girlfriend is on a chat site specifically for this. She finds it helpful. If you search on line I’m sure you’ll find it.
Helpful - 0
Avatar universal
You may have ideopathic hives.  I have had them for 33 years.  First a doctor treated with hydroxizine and tagament.   That worked for 10 years.  Then he added doxepin.  Eventually that stopped working. I now take 2 cyclosporine daily with 4 of medrol every other day.  Medrol dose packs are used for exacerbations, but they are less and less since I started cyclosporine.   There is also a new medication based on a humanized mouse anti-body that works for a lot of people with asthma and chronic hives and angioedema.  (xolair....they company helps pay the cost, just apply....but it did not work for me, in fact it made things worse, but everyone else in the d0c's office had complete success.)  I feel for you.  You have to find a very good allergist who keeps up with the very latest approaches.   I hope this helps you.   FIND a doctor who HEARS you and who is willing to do what you need.   They are out there.
Helpful - 0
2 Comments
I’ve been with chronic hives since 2005! The combination Zyrtec and xantac in the mornings seems to help keep them at bay on most days. Seasonally I have to take 2 of each in the morning.  I was so excited about Xolair when I heard about the success people were having. I tried it on 2 seperate occasions and it did nothing at all. I’ve since found out I’m allergic to eggs (which I ate daily) high sensitivity to nightshades, my eggs were usually drowned with ketchup. Since I’ve elimimated the eggs I’m much better but I was also diagnosed being allergic to red dye 40. But after every elimination diet this past year I just don’t have it in me to do another one right now.

I want to know when someone is going to figure out how to cure this because if I hear no cure and no cause 1 more time I may really snap!

My best to everyone dealing with this. Knowing I’m not alone helps me so much when family/boyfriend thinks I’m nuts. I hope anyone else out there learns they are not crazy and they are not alone!
Hi Faith and Judith, I am the husband of a woman who has suffered from delayed pressure urticaria for more than six years. Finding a good immunologist was the first step in trying to come to terms with the condition. Second was doing our own research, looking at journal articles on autoimmune diseases and treatments. My wife was put on Xolair for the first time about five years ago. She now gets an injection about once every four months and has seen a decline in hives to the point that she lives a fairly normal life. The research in autoimmune diseases is progressing. Scientists are beginning to identify the key receptors on T-cells that trigger these negative responses with the immune system attacking healthy cells. Blocking the receptors and discovering the proteins and associated genes that set off autoimmune responses is not too far away. So hang in there if you can with whatever works best for you. I watched my wife suffer for several years before we finally got a handle on this disabling condition. Now we travel and when she goes in the ocean the pressure from the tide no longer causes massive angioedema. And when she puts on normal clothes she doesn't pay the price of disfiguring hives that remain for 24 to 48 hours causing her incredible pain. One thing to consider with Xolair is the dose. If a low dose is not working talk to your immunologist about upping the dose amount. That may prove to be the difference and more effective than low dose treatments with increased frequency. And make sure you have an epipen.
Avatar universal
I've been dealing with this my entire life. I'm 24 years old. I've been to numerous doctors who can't tell me anything. I am unable to find the help that I need. I've been scanned from head to toe and nothing has been found. Hundreds  (literally) of tests ran through out my life. I am to this day still looking for someone to help me. I can't work because I never know when it'll happen, nobody thinks I'm telling the truth until I started having my mom and sister or whoever is around me to start recording the incidents. Sometimes my veins in my arms would turn purple, I'd break out in hives just swollen all over throat tightens and I pass out. This is the worst thing I've ever had to deal with not knowing what to do and what is causing this. Medical expenses are off the charts. Trying to receive ssdi is a joke because this is all unheard of. The body aches, the arthritis, all the drowsy medication, needle pricks I just can't do it anymore!!!!
Helpful - 0
Avatar universal
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Helpful - 0
Avatar universal
I am diagnosed HIV positive and not in need to start treatment yet. This was 8 months ago. Since the past two weeks I have been getting severe urticaria. In waves of 2 days yes one day no. Could this be due to my overactive immune system?
Helpful - 0
Avatar universal
I have autoimmune hives for about 5 years.  When I first started getting them with no relief from anything.  I tried all types of combinations of allergy medicines as well as higher dose allergy medications.  I don't know if any of you have noticed them getting worse with allergy medication but that's what happens for me.  Also, heat, ibuprofen, that time of the month all made them worse.  Then my doctor prescribed cyclosporin which worked well and kept my hives at a manageable level (exercise or heat still caused breakouts) but with daily life they were manageable.  However, immune suppressants such as cyclosporin are not good for you long term.  About a year ago I was started on a new drug Xolair and let me tell you it is amazing.  I go in once a month and get a shot in both arms and I have absolutely no hives no matter the temperature, what I eat, or what I do.  However, it is not a cure because I missed one shot and at about the 6 week point I again got miserable hives but as long as I go get my shots once a month I'm hive free.  If you are suffering consider talking to your immunologist/allergist about if you would qualify to take Xolair.  
Helpful - 0
Avatar universal
I have the urticaria or allergy or hives for two years now.  I have tried all kinds of medication, cream even be very careful what not to eat, and found that I am allergy to everything I eat.  Lately, I have read of the use of baking soda.
Believe it or not the main cause of urticaria is the imbalance of acid-alkaline in our body.  I am now free of urticaria.  I add 1/4 tsp of baking soda into a glass of water, stir well and drink it.  The taste is awful.  You can make a few attempts to drink it.  But, you must take a glass daily.  You will be amaze with the result within a few days.  As for your itch and swelling, add a few drops of water on to a tea spoon of baking soda, make a paste and apply to the area that affected.  The swelling will go down and the itch will stop.  Give it a try and you got nothing to lose!
Helpful - 0
Avatar universal
I have the urticaria or allergy or hives for two years now.  I have tried all kinds of medication, cream even be very careful what not to eat, and found that I am allergy to everything I eat.  Lately, I have read of the use of baking soda.
Believe it or not the main cause of urticaria is the imbalance or acid-alkaline in our body.  I am now free of urticaria.  I add 1/4 tsp of baking soda into a glass of water, stir well and drink it.  The taste is awful.  You can make a few attempts to drink it.  But, you must take a glass daily.  You will be amaze with the result within a few days.  As for you itchy and swelling, add a few drops of water on to a tea spoon of baking soda, make a paste and apply to the area that affected.  The swelling will go down and the itchy will stop.  Give it a try and you go nothing to lose!
Helpful - 0
Avatar universal
Zolair shots work for me. I suffer since 1996 with hives.
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535822 tn?1443976780
I also get times when the welts break out , itching  and burning, I had the first bout when I had big dental work done and assumes It was from the meds ,anesthetics they used..Its back again after taking 5 days of Bactrim that made me feel horribly sick.So check out any meds you are taking especially any with sulphur in them ..
Helpful - 0
Avatar universal
Please do not kill yourself!! Your post broke my heart </3 As of about a week ago I started breaking out in itchy red hives. I have just realized what they were by doing research online ( I thought it was mosquito bites or poison ivy) On top of this I have chronic pain and insomnia..so take it from a lady that is always suffering..life is too good to stop living. I plan to try Zyrtec and am also taking benadryl and prednisone with hopes the hives will subside. We are all in this together and dealing with the same issues sweety..I am here if you need a friend. I will let you know if the zyrtec works and if so you better try some and stop all this ending your life nonsense..my prayers are with you and everyone else dealing with it.
Helpful - 0
Avatar universal
I have had bouts of chronic urticaria since age 8.....I am now 56 years old. that first time (age 8)....it lasted for 3 months.  My parents thought it was an allergic reaction to "something"?? Then it just went away.  My next experience was at age 17.....and it lasted 6 months.  The time after that at age 28 it lasted 9 months. At age 37 it lasted a full year. When I turned 45 I woke up with that oh so familiar itching & burning witH welts everywhere....and I thought I AM NOT GOING THROUGH THIS AGAIN. I checked out several sites on line and found zantac/zyrtec taken together would work.  It was wonderful that finally I found a "cure". Worked beautifully.  when I tried to stop taking these meds....it came back like gangbusters.  So I continued to take them for over a year and finally it was in "remission",  Now here I am at age 56....and yes....they came "back" 2 weeks ago.  UGH!! My H1 H2 blocker combo of zyrtec/zantac isn't working too well this time.  Now to find something else !!
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13116921 tn?1428616525
DebMatt,

I too suffer from Chronic Urticaria. It is very depressing indeed! I have tried lots of medications, and have had it for 7 years now. I am only 28 years old. Im going to Hawaii tomorrow, and I am broken out in hives from stress, and now I'm stressed even more because I know the heat will make it worse. People loo at me like I'm a monster some times, or point it out to me! Like I didn't notice! Please do not end your life, I am hoping they find the ultimate cure. We are all going through this together! Stay strong.
Helpful - 0
Avatar universal
I have been suffering from Chronic Hives off and on for ten years now, been on prednisone e Doxepine Xyzal, Zyrtec, Clariton as well as many more, Been from Dr to Dr to Dr , They al think I am NUTS, It is so debilitating, And I hope neither of my Daughters get this some Day, I Am Cconsidering SUICIDE, How Very Sad the Medical Community Cannot help us, and Blame us Because they Cant find an answer!! I have a 4month old Grandaughter, and Would Love to  see her Grow Up!! But, Sadly I cannot take this anymore, So I am getting my affairs in Order, and I am strongly leaning toward Ending my Life. I wish all my fellow suffers A cure to this horrible Disease!!
Helpful - 0
Avatar universal
I have been suffering from CIU and angiodemia for 4 years now but only diagnosed for 2. Shortly after I was diagnosed with epilepsy. I'm on fenofexodine and citrezen for the hives but my consultant is talking about immune suppression. Has anyone had any luck with this?
Helpful - 0
Avatar universal
I suffer chronic hives.  I weened down to 1 Zyrtec every 3 days.  At 9:00pm on the third day, like clockwork, I get a breakout.  I suffer with all of you.  I have been going to a Naturopath.  PREDNISONE IS THE ENEMY, I understand it works when your on it but the moment you go off the hives return with a vengence.  While I do believe CANDIDA overgrowth is the main culprit, which is a symptom of autoimmune disease, but no one here has talked about MERCURY.  Google Candida, Mercury, Hives and Prednisone...

The hives are caused by the Autoimmune Disease, not the other way around.  Also if you have any sort of Fungal Infection, i.e, jock itch, athletes foot thats a dead ringer for Candida Overgrowth.  First its a bacterial takeover of the gut, that leads us to Gastrointestinal docs who put us on meds that cause fermentation from our generally bad diets and lifestyles.  The Fermenting that happens in the gut creates a perfect place for Yeast to grow.  We feed Yeast with sugar and yeast, which is in just about everything.  After awhile the Yeast turns into a Fungus and thats when the real problems begin.  The Fungus then penetrates the stomach wall and gets into your bloodstream.  Your immune system begins to get overwhelmed and confused and begins attacking you.  

The pharmaceutical companies are profiting off of your illness.  Notice, almost every post mentions Prednisone or some other so called miracle cure.  Dont forget the connection to mercury... if you have Amalgam fillings... get tested.  You will not rid your body of Candida Overgrowth if you have Mercury poisoning.  I suffer with you and this information wouldve been gold for me 10 years ago.  God bless you all.
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Avatar universal
I would also like add I feel amazing in the sun but suicidle when there is humidity.  The cold is soothing but if I step into heat it's horrible. Everything from clothing to my glasses on my face causes a breakout. The face is a brand new issue that I never had. I am coverec in tattoo an ironicly never had a hive in s the area of one during getting then or after. Needles from ftom the dr are not a problem either nor is getting a massage. But brush my skin the wrong way and it's game on!
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Avatar universal
Finding this post is bitter sweet. It drives me mad that there are do many of out there suffering with hives and doctors still cannot get it right! Reading all of your stories (or most) makes me feel less like the only one. My friends think im nuts when I won't go out because I itch and my mother tonight it was all im my head until i finally stood practically naked in front of her during an outbreak. Needless to say she now believes me.

I am a 40 year old woman and My first outbreak was in 2005 and I saw a dermatologist who told me I was allergic to myself and gave me meds to take before bed. No help but then shortly went away. They came very rare and randomly after that. Then a little more often but never stayed around that long. This went on for a handful of years.

About 2 years ago I finally decided to see a GI about bloating issues that I got tired of trying to fight it on my own. He diagnosed me with hashimotos. He checked my blood a few more times and when my levels were the same back to back he then said I had Graves' disease.

I then saw an Endo for months who was treating me for hyperthyroidism as a symptom of the graves. My hives started to come more frequently. I cannot recall if it was before or after starting methimazole but either way they were in full force and the endo said it was not related to my thyroid or graves. I went on to see an allergist who only found an allergy to grass. He then diagnosed me with another auto immune disease called dermatographism uticaria. Gave me a shot which did nothing and told me to take 1 xantac and 1 zyrtek together every morning. The itching was not as bad and my skin would not raise but I still continue up get the red spots from just about anything. Even taking off a pair of pants. If they rub against my legs on the way off it looks like scratches.

Since the end of the summer of 2013 I i have still been taking .05 methimazole, Zantac and zyrtek each morning. (I also tske 20mg adderal XR)

After years of substance abuse when I decided to get healthy I quit smoking Amongst everything else and all of this stuff pops up. The offers of pill after pill was a huge turn off which is why I have been just "dealing". About 6-8 weeks ago after a year and a half of daily itchness and breakouts 3-4 times a week they are now daily. All day long! I cut mens hair so obviously at work im at my worst. I am 2 weeks into gluten free diet which has seemed to help my bloating (which not 1 GI helped with) but the hives seem to be worse since removing gluten. Also last blood results about 3 weeks ago show my levels were no longer hyper but now hypo. Could this mean im back to hashimotos where I originally started and that's causing the severe flare up?

Im going to see a Holistic/alternative Dr. tomorrow in hopes of treating the root of the problem since clearly there is no relief for the symptoms. Im convinced it's all a result of sn y healthy gut ftom pain pill abuse (on a list of other things) so I refuse to continue taking pills.

Has anyone had success with cleaning and or diet change?

(Sorry for any typos im currently on a bumpy bus)

Helpful - 0
1981399 tn?1362931063
Hi,

for me Zyrtec/Xyzal & Singulair doesn't do any help any more, no side effects either.
I just don't take those meds anymore, because i don't like to poison my body with chemicals.

Now if i have this itchy skin syndrome, i just try to ignore it. Nights might be bad, but if its gets really really bad burning & itching, then i take Atarax, it makes me so tired that i'm able to sleep. I dont know if it helps with this condition at all, but i just need to get sleep also then when i have this Chronic Autoimmune Urticaria.

Spring/Summer and Sun helps always.

All the best!
Helpful - 0
Avatar universal
Did your heart race or opposite feel super tired taking zyrtec and singulair? I am nervous taking alot of meds but nothing is helping
Helpful - 0
11443041 tn?1431445907
I am on my second horrible hive attack in two years and this one is the worst ever. I think I triggered it when I started eating fermented vegetables and taking probiotics to get rid of candida overgrowth. I ate no sugar or carbs for over a month. I have Hashiomots and autoimmune urticaria. I've been to numerous specialists and allergists and the Mayo Clinic and they all tell me I may never know the cause and I just have to treat the symptoms. I got a steroid shot a week ago and when that didn't help I began on oral prednisone as well as zyrtec, hydroxyzine, and singulair. The H2 blocker that starts with an R did not work for me and I got hives from it. I have had hives all over my body for several weeks and they finally seem gone until an unknown trigger happens. I avoid all soy, gluten, dairy, and MSG and lately can't have fruit or nightshades Been eating nothing but organic homemade chicken soup for the past 2 months. Seeing  a naturopath tomorrow hoping to find out if a balance of my immune system, adrenals, and thyroid can help ease the symptoms.  I'm worried that once I get off the steroids I will have outbreak of hives again. Im very worried about weight gain from steroids and had RNY gastric bypass on 1/24/12 and have successfully lost 100 lb. But I won't be able to keep the weight off on steriods and hiving out at the gym. This site is a god send because it's good to know I'm not alone. There are a lot of people on here!
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Avatar universal
It is working!  The testosterone is working great! My hives have gone down! My does may need to get larger but its working!
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