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530191 tn?1214166411
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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Hi,  for the last five months I have suffered from; hives, red angry skin "stain", extreme dry skin, acute itching and burning, first time for me. However, for a long time I have suffered from "stomach attacks". When they come which can be every month or once a year, they feels like something from the scene of "Alien" (when the creature bursts out), the pain is extreme! I have seen several doctors, but so far nothing has truly helped. I am taking something like prednisone and Tavegil  (I live in Europe and some meds have different names) supposedly to keep the symptoms "under control". Nevertheless, regardless of the meds, the symptoms come and go as they please and I have ended in the E.R. and different wards five times. A couple of weeks ago they gave me singular, this was horrible, it triggered my "stomach attacks" a rash and made me catatonic for three days.  Now they want to give me Xolaris. It seems that I am allergic to meds, so I am very careful when they want to give me new ones.  I have heard that Xolaris in the long run, does not work and it can make you quite sick. Would love to hear more about your wife´s experience, thank you!
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I have not noticed any adverse effects from Xolair injections.  Apparently some people can have an anaphylactic reaction so I stay at the doctor's for a little while after the injection but so far no problem.
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After four weeks of waiting, I am excited to report that I am scheduled for my first Xolair injection next Thursday.  I really really really hope that this will work for me.   I thought that it would break my bank, but my insurance is actually covering the majority of the cost and then there is a program that everyone qualifies for (at least in the US) that covers 80% of the co-pay cost up to $4000 a year.  
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My wife has had 5 Xolair shots to date. Cost has been $735 per injection. The pattern of response has varied from shot to shot. In some cases the hives rapidly disappear within a few days. In other cases she has had a delayed reaction in which she is uncomfortable for as much as a week or two and then the immune suppression starts to kick in. After every shot she has experienced fatigue for as much as a week or more. But she does get about 3 months of minimal hive activity before the little buggers start coming back with a vengeance. I think if we were to decrease the time between shots her overall relief from the hives would improve. But at the price these shots cost we are trying to compromise. She has had know indication of any allergic response which is great but we have an epipen just in case. So hang in there and keep a diary of your progress along with symptoms associated with the shots. You will then get a sense of how your own body compensates. Hopefully at some point both you and my wife will go into remission.
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I got my first shot of Xolair five days ago, but I woke up this morning with hives.   Did it take anyone longer than a few days to get relief?   Most of what I have read has indicated relief in 3 to 4 days.  Lenrosen is the only person who indicates two weeks.   Please let me know....thanks!
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I find it usually takes about a week after the Xolair injection until I am symptom free.
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How are the hives now?
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Hi There,

The angiodema completely resolved within a few days.  I have not had severe hives since that last episode I mentioned five days after the injection.  I have had some skin irritation/itching, but nothing on the level as before.

The other thing I have been experiencing is anxiety and flushing (for no reason).  I thought it was originally a response to the Xolair, but they did a blood test and it showed I was not having a reaction.   They now believe it may be caused by the Singluair I was also taking.  I came off of that 13 days ago and show some improvement.  

I go back for my second Xolair shot this Thursday.  I am crossing my fingers that things go smoothly.

I hope your wife is doing well.
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That is good to know.  My doctor is telling me it could be 2 to 3 shots.
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things you need to start researching!!! EDUCATE YRSELF!! and find a good naturopathic practicioner to work with! someone who specialized in homeopathy, TCM, etc. and a CERTIFIED experienced NAET practicioner

NAET: http://www.naet.com/subscribers/doctorResults.asp?FromQS=1&db=default&City=&State=OR&Zip=&Last=&Country=&Status=on&sb=4&view_records=Search

get this book it will change your life!!
autoimmune diet: http://www.thepaleomom.com/autoimmunity/the-autoimmune-protocol

this is CRITICAL if you suffer from chronic allergies or autoimmune urticaria! but these things will help EVERYONE!!
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I have been battling chronic hives for 6+ months. After 3 trips to Urgent care (steroid shot & RX for oral steroid), and 1 trip to the ER with severe angioedema (face & lips swollen huge)given IV steroid, pepcid & benedryl. It took 2 rounds of IV meds in the ER to get it controlled enough to go home. Prednisone is so far the only thing that works & once I tapered off that, hives come back. I finally went to an allergist, he immediately said this isn't caused from allergic reaction. He ordered blood work that came back ANA positive. I don't know a lot about the ANA test, other than it has to do with antibodies. On my 2nd visit he mentioned Xolair injections as a possible next step. He also suggested he may send me to see a rhumotologist. Taking all the "safe" drugs daily:Zyrtec,Allegra, Benedryl,Zantac..... no relief. Then went to a Dermatologist. They took biopsy, gave me RX steroid cream & ordered blood work, stool & urine tests. I go back there in 6 days to get the results. I do have a sluggish thyroid & take 180mg Armor thyroid daily. It is so nice to be able to read about others battles with this debilitatiing disease and know I'm not the only one. These hives are really interfering with my quality of life. I'm getting sick & tired of people saying "its your nerves". It's true that they do get much worse when I'm stressed. Many blessings to those who have suffered this for years.I'm 6 months in & don't think I can handle anymore of this :(!.
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Hey there everyone.  In January I was diagnosed hypothyroid.  I then started taking 50ug of Levothyroxine daily.  Once tested in 30 days, I stopped taking it.  After a month of being off of it, I broke out in a few small patches, nothing major.

Slowly, it has built each day and have been suffering with Chronic Urticaria ever since.  I have been through Steriod shots, Prednisone as well as the cocktail of anti-histamines like everyone else.  I am currently on 50mg of Hydroxyzine, 10mg Singular, 150mg Randitine and 20mg of Zantac.

It takes nearly all day to get relief and then it all returns in the morning.  I have had several blood panels and met with my GP, Derm, Allergist and Endocrinologist.  No one seems to have many answers and Endo ordered a few more blood samples this past Monday -- will see the results.  I meet with Allergist tomorrow to also review blood work.

My symptoms are pretty much identical to the rest here, full body weals on arms, neck, face and legs as well as occasional lip swelling.

Interestingly, I was told by my GP during all the symptoms that I no longer need to be on Thyroid medication.  I was also offered Armor Thyroid.  I'm not taking either currently because the single time that I did take thyroid medication while breaking out, it made it worse.

We'll see tomorrow, hopefully this is not permanent.
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Did they say what the ANA number was 1:40 or 1:120...something like that?
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Texas here too...  what did your allergist say?
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I have a 10 year old and 5 year old  that has acne and heat like bumps on their face only the 10 year old got them first and then it came on the  6 year old 12 hour later took them.help to the doctor then hospital and know one can give  me and answer.It's not they laundry detergent are body wash because I'm using the same wash and detergent as always.THEY DON'T GO TO ANY DAYCARE KNOW CHILDREN HAS CAME TO THE HOUSE.
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Google histamine intolerance, DAO enzyme, and the low histamine chef; these have been eye openers to me after suffering for 20 years with hives, hypothyroid, vitiligo, endometriosis, anemia, and lately acid reflux. At 46, I've decided to change my diet to an anti-inflammatory diet (no gluten, dairy, nightshade foods). I'm taking vitamins, iron, and zyflamend-NewChapter. Good luck to all.
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Check out melscure.com
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Allergist said -- get back on Thyroid medication ASAP.

I'm now on 30ug of Armor Thyroid and nothing else -- stopped the steroids and the rest of the cocktail of drugs.  I have a mild rash once a week, nothing bad (2 Zyrtec and it's gone).  I did get approved for Xolair, but given this improvement, I'll probably pass for now.

Crazy how the Thyroid can affect all of this.
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I put this post earlier but cant find it now
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I developed hives about 3 months ago, out of no where... I am autoimmune.. we have tryed everything..  all the allergy meds...nothing works... I'm miserable...... only thing works a bit is predinsone and thats temporary... and for me deadly because I'm diabetic and it raises my sugar for a short time.... anyone have advice.... ***@****  thanks
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Hi
Just trying to find a Doctor in Australia, preferably Sydney that will do the Xolair injections for my son's Chronic Urticaria as antihistamines don't seem to be working as well as they did. After reading your post thought you may be able to help.
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Please let me know if they find something.  I have been suffereing for 14 years!!  I have dreams that I go to the Mayo Clinic and just lay on the floor and tell them I 'm not leaving until they figure it out!!

thank you and I hope you are healed!!
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Try plaquenil, NOTHING else worked for me until then.  I was on low dose of steriods until the plaquenil took effect (1-2 months)!!  I have been on it with very minimal side effects (upset tummy once in awhille)

Good luck!!
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was it signs of urticarial vasculitis?  I've had hives for 14 years!!

Try Plaquenil 200mg 2x a day.  It take a couple months to start working but it helped me!

Good Luck.
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FINALLY!!  I've had chronic hives for years - so bad that my face, ankles, arms, etc. would swell up. No antihistamines worked, and prednisone only worked for the first day. As soon as the dosage dropped, the hives came back. This year the FDA approved a drug called Xolair. It is 2 shots in your arm each month. I received the shot 5 days ago and my hives have cleared up with no signs of coming back! I went from utter misery to freedom. If you have chronic hives and nothing is helping and you are suffering, look into this drug - I've felt no side effects, either....this stuff is a miracle!!
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Hi. Did you ever find a doctor in Sydney. The heat is here and my daughter is really suffering. Thanks.
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I have had chronic hives for 7 years and no none knew what caused them. I finally found a doctor, OBGYN who thinks he knows what is going on.

I was just diagnosed so I am not sure if this is the cure or not.  

I have low testosterone and high progesterone. They are putting me on testosterone cream to see if it makes them stop. I will keep you posted.

Get your testosterone and progesterone tested!  Doctors had no idea what was wrong with me and it turned out it wasn't my thyroid. But by going to an endo I did discover I had thyroid cancer, another story there.

So get tested for low testosterone and see if it is the answer!
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To lgmimi,
I hear your pain - and everyone elses here on this forum.  I'm in New York City and going into my 7th month of suffering with hives. I too am sick of people saying "Deb, you have to calm down..."  I'm also sick of doctors who won't take the extra steps necessary to unearth the problem. I've been in ER 4 times - passed out and threw up the last two times. Prednisone made it worse. Quercetin had been helping - I thought - but I suddenly got a severe attack after 5 days of being hive free. I'm going to add B-12 and Zinc at my Allergist's suggestion. I've suffered considerably and had to leave work twice and have had severe outbreaks out of the blue that have caused me to cancel engagements at the last minute. My sympathies go out to all who are struggling to find answers. As one women stated, red, itchy welts on your body are a sign something is wrong...I abhor the medical profession or anyone who insists that this is simply a manifestation of our minds.  Histamine is known to create a chemical imbalance in the brain and who wouldn't be irritable and tired after months of dealing with this condition? I’ve been gluten free for 3 years and I’ve been on a low-histamine diet for 3 months. Symptoms have lessened but I still have outbreaks that send me to ER. Hope to all.

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Howdy all,
Both me and my twin sister have suffered with hives for over 15 - maybe longer years. At first antihistamines controlled the appearance of the hives but little by little the hives worsened until the antihistamines barely helped at all.

We've searched an' searched for the answer. When on a gluten free diet that only helped slightly and mostly just made us lose weight which wasn't helpful since we were not over-weight. We also cut out sweets and that actually helped a bit more but still we got the hives.

We had also cut eggs out of our diets as an allergy test showed that we were allergic to eggs - but avoiding eggs didn't help either....So recently we went ahead and had eggs for breakfast and guess what! The symptoms of chronic Uticaria improved.

This got us to thinking that hives (at least for us) might suggest a deficiency in several nutrients. We are now taking choline, magnesium, and vitamin D3. This has helped us a lot and have actually been able to cut down on the amount of antihistamines that we have to take to remain somewhat comfortable. Eating eggs seem to work the best so we suspect that we're still missing some nutrient that is present in the egg that we haven't begun to supplement with.

We really do believe that hives are related to nutrient deficiencies as well as insulin resistance....so if we could just curb our appetite for sweets and carbohydrates we know we'd be a whole lot better off.

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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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11443041 tn?1431449507
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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Did your heart race or opposite feel super tired taking zyrtec and singulair? I am nervous taking alot of meds but nothing is helping
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1981399 tn?1362934663
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!
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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)

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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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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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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?
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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!!
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13116921 tn?1428620125
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.
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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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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.
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535822 tn?1443980380
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 ..
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Zolair shots work for me. I suffer since 1996 with hives.
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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!
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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!
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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.  
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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?
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Does anyone here  with AU experience burning scalp with hair loss?
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Yes
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I&#x27;ve been dealing with this my entire life. I&#x27;m 24 years old. I&#x27;ve been to numerous doctors who can&#x27;t tell me anything. I am unable to find the help that I need. I&#x27;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&#x27;t work because I never know when it&#x27;ll happen, nobody thinks I&#x27;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&#x27;d break out in hives just swollen all over throat tightens and I pass out. This is the worst thing I&#x27;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&#x27;t do it anymore!!!!
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