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Autoimmune urticaria anyone?
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3096276_tn?1341041968
So sorry to hear that you are having to deal with this problem now.  It is so frustrating.  I found great hope in the short film "Fat, Sick & Nearly Dead" about an Australian man who has hives all the time and his meds caused him to gain a lot of weight so he went on a juice fast for a while and was cured of his hives & was able to eventually come completely off all meds.  There is hope but not from doctors.  Here is the link to the film:
http://www.hulu.com/watch/289122/#
The commercials are irritating but it's worth it in the end.
Good luck to you and may you be healed in the name of Yahshua!
Holly
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Avatar_m_tn
hello, this will be brief, but yes, the firstbthings yjat happen to me before the hives are chill cramping and joint aches.
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3096276_tn?1341041968
Since my last post on Jul 4, 2012, I was introduced to the following article on Tumeric/ Curcumin:

http://www.****.com/genpage.php?tname=foodspice&dbid=78

I bought some tumeric and began taking about a teaspoon of it dry each day.  After a week I could tell the difference.  Grocery bags no longer caused a break-out and wine didn't cause a problem either.  I am very optimistic that this could be the cure for what ails me!  No longer will I have to suffer with these disgusting, painful, inconvenient swelling and blisters!
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Avatar_f_tn
I would be very interested to hear how you are going on the singulair shellann as I have recently started taking it and have had a miraculous improvement though it is only 10 days so we will see.

I have been reading this web site for a couple of years now, but this is the first time I have contributed. I am a 59 year old woman and was first diagnosed with autoimmune urticaria in 2001.  After a few miserable weeks and a number of medications, plaquenil eventually controlled the condition and when I stopped the plaquenil after 12 months the urticaria did not return for several years.

The urticaria eventually returned in 2007. It was once again controlled by plaquenil.  I stayed on the plaquenil for 2 years this time, and when I stopped the plaquenil I was once again sympton free.

Unfortunately the reprieve from the condition did not last long and it started up again about 12 months later. This was at the end of 2009.  It has continued since then despite various medications, and I have not been symptom free for more than a few days over the last 3 years.  Plaquenil did not work this time.  I have been on methotrexate and cyclosporine, both of which ultimately failed to conrol the urticaria and both of which had troublesome side effects.  I tried dapsone, but had to stop after a couple of weeks as it gave me a dreadful headache.  I have been on large doses of antihistamines most of the time and taken prednisone when the condition has been bad.  For the last 12 months I have taken prednisone daily in varying doses.

Recently my doctor suggested I try xolair injections which he hoped would be very successful.  In Australia xolair is approved for severe asthma but not for urticaria and this meant that I had to pay from one pharmacist $649 and from another $499 for a single injection.  The injections helped for a few days only, certainly not to the extent my doctor had hoped.

I had a holiday in Europe for 5 weeks from late August this year. I had my second xolair injection in Italy which was quite an exercise as I had to keep it refrigerated for a week while travelling before my appointment with an English speaking doctor I had arranged before my departure. While in Europe we spent some time in very hot climates and a week before we returned home I developed the most ghastly rash which started on my arms and then spread to my legs (which ended up bright purple on the shins).  Despite taking quite high doses of prednisone and antihistamines and using hyrocortisone cream, I was almost driven insane with itching.  The rash was different to the urticaria rash but I then developed urticaria on top of the other rash.  It got worse and worse and I was really worried that I would end up in hospital overseas. Fortunately I made it home without this happening.  

When I returned my doctor increased my prednisone dose to 50mgs plus 3 zyrtec and 100mg ranitidine, but I still got worse and the rash spread to my face and other parts of my body. Four days after I returned from overseas I woke up with swelling of my face and throat so I got my husband to take me to emergency at the hospital.  The hospital doctor was satisfied that I did not need emergency treatment but he rang my immunologist who asked him to admit me to hospital and I spent 4 days there.  I had skin biopsies, a CT scan, blood tests and urine tests.  I have also had a colonoscopy since discharge.  Apparently a rash can be caused by a tumour and my doctor wanted to exclude this possibility.  Fortunately the test results have excluded the nasty possibilities so it seems it is just my immune system going crazy and my doctor thinks I have had a reaction to some prescribed medication which I have now stopped.

My rashes improved with the higher doses of prednisone but I was still very itchy and it got worse again as I reduced the prednisone dose.  I was quite distressed with the itching which had continued for over a month. I rang my doctor who suggested I try singulair and I can't believe how successful it has been. From being really itchy every day for over a month (despite all the medication) I have been syptom (symptom) free for 10 days now. I am still taking zyrtec, ranitidine and prednisone (now 15mgs) so will see how it goes as I reduce the prednisone further. I really hope this is going to be a solution for me as I am so frustrated by this ongoing saga of my health.

I have experienced most of the things that others talk about.  Hot weather is a nightmare. I often wake with puffy eyes. Tight clothing and underwired bras bring on delayed pressure urticaria.  Scratching my skin, however gently, causes unsightly dermagraphism.  I have had lots of chest pain, resulting on two occasions in visits to emergency to check out my heart - I think the problem has been swelling in my oesophagus which I understand can be affected by urticaria. Had an endoscopy last year but the gastoenterologist said he could see nothing that would explain the chest pain. Saw a cardiologist this year and he said my heart is healthy. I often feel so fatigued and vaguely unwell - not sure whether this is the condition or the medication, or maybe both. I have to have blood tests every few weeks. I am forever going to doctors. Fortunately I feel blessed to have a really understanding and sympathetic immunologist looking after me.

I find it very frustrating that people who do not have this condition cannot appreciate what it is like. I often think that others believe I am making a fuss over nothing and that I am just a hypochondriac. I recently saw the film "Sick, Fat and Nearly Dead" and found it very inspiring, though I don't think I can be disciplined enough to do the juice diet.  I will try, however, to be really conscious of what I eat and drink.  I think my diet is quite good but I do have a weakness for sweet things so will try to limit these.

Oh well, enough of a rant for now.  But I do find it very comforting to hear from other suffers out there and know that I am not alone.
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Avatar_f_tn
HEY...i went for years wondering how to stop the urticaria; hive. Asthma, induced by change of weather, stress, you name it. so I call a homeopathy doctor...got on a series of b-complex w/ b-12 and a loratadine dissolvable from rite aid. for about 15 for the box of 60 and $5 dollars for the vitamins. I have not been to the doctor in a year. on occasion i get the pain all over but a red exedrin caplet and some caffeine usualy clears it up. good luck hope this helps!
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Avatar_m_tn
I have had chronic idopathic urticaria for 6 years now.   I developed hives - giant wheals - and had to keep taking prednisone, every time I went off of the prednisone they come back, eventually my immunologist/allergist put me on singular, doxepin & reactine.  The hives went away after a year or so.  Now they have come back since before summer, and there is not a day I do not have them.  The medication only partially works now (singular, doxepin, reactine). I get them from pressure, friction, any kind of minor skin trauma or stress, I flare.  It is very debilitating, as I get them all over my hands/feet/body I am unable to work out when they are really bad, and I have gained about 45 pounds :( I am a very active person & I work out almost every day.  When I am having a severe flare, it makes me feel like I am going crazy with the severe itch & pain.  I miss work a lot & people just don't get that it is NOT an allergy.
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Avatar_f_tn
Singulair didn't turn out to be the miracle cure I was hoping it would be (see my post from 4 November).  When my prednisone dose got down to 10mgs the urticaria began to reappear. At 5mg it was quite bad.  Saw the immunologist yesterday and I am back to 7mg prednisone plus singulair, telfast, zantac (ranitidine) and now since yesterday also sinequan which is an old antidepressant and also an H3 receptor blocker. Had an itchy night and this morning I had swollen eyelids (happens most mornings lately) and urticaria on arms, thighs, trunk, hands, feet, back. The slightest friction scratch or pressure causes noticeable inflammation.  Just going into summer here so it will get worse. Oh dear!
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Avatar_f_tn
I have hashimotos disease i have hives i have allergies (gluten, wheat, nightshade, potatoes, eggs, milk, cats, dogs, mold etc) ) i was diagnosed with hashimotos at 30 and the allergies about a year ago. These came on all of a sudden. I also now get hives AFTER removing all of my allergens.  I get b 12 shots weekly because i do not make any. I have ( this month) and impacted small intestine. Last motnh i was borderline diabetic, but i don't eat sugar and this motnh its normal. I have weird sores on my face that have little cores in them and take months to heal.  Every few months i get a new or weird symptom and then it goes away. I am fallin apart. Im 37 i weigh 108lbs lol and if you guys know what this is or have similar things (like i see here) im willing to go to any doctor anywhere in the US if they are helping! Please let me know! B
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Avatar_f_tn
I have hashimotos disease i have hives i have allergies (gluten, wheat, nightshade, potatoes, eggs, milk, cats, dogs, mold etc) ) i was diagnosed with hashimotos at 30 and the allergies about a year ago. These came on all of a sudden. I also now get hives AFTER removing all of my allergens.  I get b 12 shots weekly because i do not make any. I have ( this month) and impacted small intestine. Last month i was borderline diabetic, but i don't eat sugar and this month its normal.i have severe low blood pressure.  I have weird sores on my face that have little cores in them and take months to heal.  Every few months i get a new or weird symptom and then it goes away. I am fallin apart. Im 37 i weigh 108lbs lol and if you guys know what this is or have similar things (like i see here) im willing to go to any doctor anywhere in the US if they are helping! Please let me know! B
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Avatar_m_tn
Are you still hive free?
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Avatar_f_tn
I was suffering from chronic urticaria since last 6months and I was on steroids that is harmful in long run.I was taking every possible remedy from every possible specialists but all in vein then I decided to meet my homeopathic doc friend long been practising hpathy since last 30yrs in pune .he had taken my history and advised some remedies.... surprisingly today I am out of all disturbances.....it was really dramatic and wonderful..... despite of all evidences against homeopathy I will suggest you to visit this man you will be cured definately..... DR. Shiwaji Deshmukh
02025441890
02025453078
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Avatar_f_tn
I have suffered 7 episodes of urticaria over the past 24 years, usually around 9 months each time.

This current episode has been sever, and I found by moving my Thyroxine dosage (Goldshield for Hashimoto's) to different times during the day, I was able to determine that it was one of the major antagonists.  I have since changed to Synthyroid and my symptoms started to reduce.

I also added  low histamine to my gulten free, vegetarian diet  in October and now starting to see big improvements.   I'm now cutting back on taking some of my anti histamines doses.

Each time I get Urticaria I can relate it to living or working in a new building, and as I have Chemical Sensitivity and are very sensitive to Formaldahyde, I can't rule this out as a catalyst.  I also suffer hemiplegic migraines, asthma and have had endometriosis.
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Avatar_m_tn
  I started with a severe itching problem back in June of this year and finally decided to go to a dermatologist.  For three months I tried every prescription cream known to man, none of them ever helped.  Long story short, after seeing the dermatologist, then a neurologist, then a chiropractor, I went to an allergist.  Only because I broke out into hives and the chiropractor advised that I have tests run.   I should have done this in the first place, but never dreamed it had to with allergies.   My allergist put me on Prednisone (sp??) for 6 days, 3 tab for the first 3 days and 2 tab for the last three days.  The Prednisone cleared everything up!!  I don't have the hives anymore, but have started to itch again.  I will begin taking allergy shots soon, and hopefully all itching will be gone.  BTW, my allergy test showed that I'm allergic to every tree, all grass and shell fish.  I'm 45 yrs old and hope that I don't have allergies for the rest of my life.
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4528327_tn?1355945592
Hello, I just was recently diagnosed with Chronic Hives x 1 month ago. I have read many CU stories, but I truly relate to your struggle. I am also a RN-ER (Philadelphia, PA). I was diagnosed with Chronic Hives after having an anaphylactic reaction to walnuts at work (work in the ER). Within one minute, I instantly began to cough, gag, vomit, and flushed. No swelling of lips/face. No angioedema, because my colleagues treated me very quickly before I spiraled down. Admitted to CCU, I was given a total of 9 epi shots, because I still appear red flushed, cough, dysphagia, and shortness of breath. Readmitted to CCU 2 days later, because my airway did not improve. I was in the CCU for 4 days on a epi drip, because no matter what I ate or drink...I was still appearing with facial flushing and shortness of breath. Currently, right now, my allergist is referring me to another allergist, because I have been in and out the hospital for anaphylactic reactions to unknown food/objects at work. I just recently was discharged from the hospital for shortness of breath and high heart rate. Now, I am on prednisone taper with multiple antihistamines...still short of breath and intermittent hives throughout the day, barely can do ADL's.
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Avatar_m_tn
Hi there I'm am a urticria sufferer for over twenty years, mines brought on by an allergic reaction to the common cold. As soon as I get a sniffle it then hits me like full on flu. Day 1 start to feel sore and joints feel like they have sand in them day 2 it wipes me off my feet, headache, muscle pain, then day 3 comes the rash and the pain, the rash starts around my hair line then appears on my neck then spreads across my whole body for 24 hours at this point I'm bed ridden and in agony, day 4 after 48 hours I start to feel better once the rash has fully gone. I have been to the doctors and the hospital in the past and there reaction has been well  you must be allergic to something or well it comes it goes just get on with it. I get 2 to 3 attacks a year and only one have I caught a cold and never had an attack. If Incan see a pattern why can't they. It driven me nuts for years and each year it gets worse, I felt as though it was only me until I read this page :-)
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Avatar_f_tn
Hi, I sound like so many of you on here. When I was 23 I contracted Strep Throat, I was placed on Pennicillin (penicillin). I immediately broke out in hives, the Dr. said I was allergic to the meds. So they stopped them, but my hives never went away. I am now almost 50!!! At one point I was covered with huge hives, 100;s of bruises on my legs, scratches from excessive itching. Swollen joints, eyes, lips, nose, feet and hands. I used to be numb in my face and stomach and hands. I would drop everything I held. I felt like I was burning from inside, and my skin was stretching. I went from a healthy young college grad teacher to almost a monster who felt like she was dying.  We went to every Specialist, I was finally diagnosed with Chronic Idiopathic Urticaria and Angio Edema. I had test after test, Speckled ANA, positive IGE and IGA enzymes, thyroid tests negative, never definitively anything. They said at one point perhaps Lupus. My "vet" of all people said to try an antihistamine and Tagamet to block the histaminic response. So I followed his protocol and simply asked my Drs. to prescribe as necessary. Finally the burning, itching and hives went away. My face and lips and eyes did not swell, I did not have to control my itching while working. Or be on Prednisone! I gained 80 pounds being on prednisone and each time thereafter. Long story short, I cut the Tagamet out for about ten or so years. I went onto Zyrtec and Singulair as I do also have asthma.(after years of Atarax and other sedating antihistamines, years were foggy and blurry, I think I was so tired!) Recently I have developed a rash on my ankles and watery eyes and then swelling from the tears, and the tears actually burn my cheeks!. Today I was researching and found the tear response was a hive response. So contemplating going back onto the Tagamet.I stumbled onto this site.  Pehaps I was in some sort of remission, but I have to say if I try to stop the two antihistamines, the hives come back! If I scratch my arm, it leaves a raised red welt, my Dr. long ago told me that tha was a heightened response and I could use it as a test. When I do not get that red streak I am not inflamed, his words not mine!


I do find it worse with stress and yes there has been a lot of it lately. I am allergic to eggs, soybean, peanuts, dusts and molds. But I have had these allergies most of my life. I feel the strep triggered this. I wish I could find the off switch and all of it would go away. It has not, I do get swollen joints, and have excessive lethargy at times. Right now I am adding Benadryl at night as recently my eyes have been itching. I think it is a flare up, just no visible hives. I am glad to have found this group, to see I am not alone. I have never been pregnant so do not know if it would have helped. In fact I am an infertility patient and I look back with some meds and cycles it may have flared up. I have grown to live with this. I have a nephew, age 11, who recently had strep and developed immune responses except his is his lymph nodes swelling and his intestine swelling and I jokingly said give him an antihistamine and tagamet and see if it works? and they did and added an asthma meds and he is suddenly much better. Wondering if there is a virus or strep connection to all of this? Prior to that I had occasional hayfever and asthma but had outgrown that. I had an unremarkable medical past prior to age 23. I am going to try the gluten diet as suggested on here, to go back on low carb diet and see if I can have my thyroid checked again to see if there is a connection. In the least I hope my story has helped someone to know they are not alone. And I have been on meds from age 23 to now, almost 50 next month, and I have no ill effects from it. I have no heart, kidney, liver, diabetic or other health issues thankfully. Just this crazy itching and swelling issue. At times I think I am allergic to myself!!! Thank you for listening.
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Avatar_f_tn
Hey there....My Doctor just put me (30 days ago) on Singulair combined with Zyrtec. This seems to be a good combination. However, I will tell you, they aren't completely gone, but my flare ups are now not daily or as widespread. I ran out of my Singulair 2 days ago (going to get it tomorrow) still taking the zyrtec by itself and have noticed a significant difference... I have had a bad flare up....I am going to continue with this regimen for now...the next step they want me to take is Chemotherapy....so uh...no...going to stick with this for now. Just as a note, I did not see a difference right away when I added the Singulair to the Zyrtec....it took about 2 weeks.... Hang in there...  
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Avatar_f_tn
Hi guys!
I just start feeling better after 7 month’s hell causing urticaria (pressure, food, sun…), angioedema, stomach ache and other symptoms. I was hospitalised 7 times because of internal edema…. I was able to be back to a normal life thank to people like you who share their experience on the forums. In my case all this was caused by a bacteria: Helicobacter or H pylori.  We can get it during our childhood or even it can be contracted when we travel… Some countries have a very high percentage of it. I don’t say that it is your case as well but it is worth to check.  I had to take antibiotics for more than one month but once my breathing test was negative (no helicobacter anymore) I starting slowly getting better. Now, 2 month later I am the happiest person ever. Please check with your doctor if you are H pylori positive. Take care and let me know if you have other questions.

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Avatar_n_tn
you mentioned in your blog about too much histimine in your body and then working against you? Well I hadnt quite understood that. One of the allergist that I has done periodic allergy tests on me and found on of the things that shows up is too much histimine, it was a number 9 on the allergy tests. the allergy medicine would work short term and then wouldnt work anymore. Still not much relief from the itchy welts.
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Avatar_f_tn
I tried plaqunil and the side effects for me were horrible. I got welts on my face so bad and painful. The only thing that has helped me so far is Zante 2 times a day, Zyrtec 2 times a day and Allegra  once a day. The dr said she could add another Allegra and Cingular if necessary but so far after a year this is working and I have Ben hive free for 5 days.
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Avatar_f_tn
That was a horrible drug for me to. I gained 15 lbs in a month and got my period every day. I just came off it Sunday and hoping the side effects wear off soon. My new allergist does not like it either and put my on a antihistamine regiment that is working so far.
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Avatar_m_tn
My wife had her first Xolair injection on Thursday. No dangerous side effects so far. Her immunologist told her the hives might get worse for a few days and then go into remission for up to a month. I'll let you know how she progresses. This first injection was done under a clinical trial. The next one we will pay for at about $750 a pop. Worth every penny if she goes into remission.
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Avatar_f_tn
I am now on Methotrexate 10mg per week, and the following daily:  Telfast (same as Allegra) 180 mg, Zantac (Ranitidine) 300mg, Doxepin 75mg, Singulair 10mg, Plaquenil 200mg and Prednisone 7mg. Still getting bad urticaria about 3 or 4 days per week.  It is worst in hot humid weather.  I am usually best the day after I take the Methotrexate but then it comes back again. Hardly a day goes by without some degree of urticaria.
Any ideas anyone?
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Avatar_m_tn
I read about a woman in Europe that suffered from several swelling to the face and body. She was on different types of steriods and eventually, a physician specializing in autoimmune studies, claimed there was some rare genetic disorder that was causing this. However, there is a special blood test that is required in order to identify this. My best to everyone on here...I started off with these symptoms about 5 years ago. A couple of doctors feel that it's due to Dengue fever (military service related) long term exposure to DDT (still used by some 3rd World countries to spray during the rainy season. Any input is greatly appreciated.
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Avatar_m_tn
It is now almost 3 weeks since my wife's first Xolair injection. Her hive incidents have dramatically lessened. If she gets a hive it disappears in a few hours. Our immunologist has never used Xolair in the case of delayed-pressure hives and thought it was unlikely that the drug would work. So far, so good. Usually treatments with Xolair last about 3-4 weeks before hive symptoms reappear. Only symptom of concern is unusual tiredness. Could Xolair be contributing to this? My wife is seeing her family doctor to get that checked out.
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1981399_tn?1362934663
Hi Debbie,
i'm about the same age than you. My Autoimmune urticaria started when i was about 30 years old.

I have symptoms about twice a year and it lasts 8-10 weeks each time. Itching is like hell, it really hearts. It makes my nights restless. Antihistamines dosn't work anymore.
And PREDNISOLON i wont eat NO MORE. It's horrible medicin.

I noticed this at youtube: https://www.youtube.com/watch?v=Pzz5edhtsUU

I haven't order the book yet, but i'm sure that we might do a lot with eating refreching food.
I try to eat lot fruits. And keeping my weight normal (or rather skinny, because then i'm feeling stronger)

I got my Autoimmune diagnos 14 years ago, before we all thought this is allergi for somthing. But it is just my own body who i'm allergic, like you said too :v :) :v

Lot of happy days and lot of smiles to you Debbie, and every other with this burning Urticaria - - let us support eachothers! :)
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1981399_tn?1362934663
Hi,

i was just posting comment here, but there was wrong link.

I meant this link, which i found You Tube last week:

https://www.youtube.com/watch?v=6D5DCN6yU5s

Has anybody already ordered that book? I would like to read commnets about it. I think that with this horrible chronis autoimmune urticaria antihistamins or other meds doesnät really work. ANd i have tried to eat  really fresh and clean food, as natural as i can find here in Northern Europe.

Well - tell here if you have got help by clening your nutrition ??

Stay in touch :)
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Avatar_f_tn
Hi, thanks to all here for sharing your stories.  I find that this type of research has helped me more than all the professional sites put together!  My son is 13 and has had Chronic Immune Urticaria for three years.  He has had about 8 episodes, the first one extended for the longest until we found a food link.

I know the food link is reported as "rare" but if anyone hasn't tried it, it is worth a go...he went off of everything except pork, rice and water for two weeks.  In the first 24 hours, he went from having 90% of his body covered, along with congestion to almost clear both from hives and congestion.  He now stays away from beef, dairy, citric acid and corn products from our months of experimentation to identify triggers.

When he is clear, he can eat these foods in controlled amounts.  Not sure if this will help anyone, but it is worth mentioning.

My wish for success in controlling this to each!  Kristen
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1981399_tn?1362934663
Hi Shellan,

i just like to say Hi :) And let you know your story is a lot like mine. I have Chronic AUTOIMMUNE Urticaria.

I'va tried to H1 + H2 -respetor Antihistamin: means for example SINGULAIR & XYZAL. I don't really know if it's helping or just the time period this Urticaria have now been going on. I've also been teking ATRAX for nights to heliping sleeping while skin is itching anyway.

This time i have had urticaria every day started on January 20th. So about two months now.

Last week i did not take ATARAX at all. ANd yesterday evening i took, AND I REALLY WONDER THIS WHAT HAPPENED ---->  I think ATRAX made my skin become itchy !!!!  

Can it be so, that my body has devolped over sensitiveness for ATARAX????

Have you other having this kind of experience?

Thanks for all & take care :)

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Avatar_m_tn
We are now at 6 weeks after my wife got her Xolair injection. She has virtually no hives. The ones that do occur disappear quickly. But she is more tired than usual and was at her GP today to get his take on things. He ordered blood, urine and stool testing to rule out known Xolair side affects.

I actually can hug her again without a hive happening an hour later. One shot after almost 5 years of agony and she is like a new person.
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Avatar_f_tn
Greetings,
I am the mother of a hashimoto thyroiditis, migraine, asthma, allergy, hive suffering 11 yr old.
For those of you with chronic (unexplained) urticaria, look into bed bugs...we asked the pediatrician if that what her hive were, "no no no, thats not what bed bug bits look like" they all said....9 months, countless doses of predisone, atarax, zyrtec, and 14 drs later, it was.  
it may not be what bed bug bites look like on average, but she was having allergic reactions to them, flaring up the urticaria. that problem was solved but she still had the other issues.  we started Xolair a couple months ago ( third shot today) she gets them in her arm and the hurt like heck.. she cries on and off the rest of the day, sometimes affecting her sleep and school attendance the following day.  besides, "breath" and ice packs, do any of you have any recommendations for easing the pain and anxiety related to this treatment?
Thanks,
FuddsMom
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Avatar_m_tn
Thanks for giving us hope!
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Avatar_n_tn
please make an appointment with  an allergist. I have been in your shoes with the frustration and the doctor blaming you for not falling into his protocols with predictable outcomes with each drug given. I had most plus some of the symptoms that you mentioned. and it took three different allergist to get me on the path to somewhat normal life! start a calendar with enough space to write what you did that day, everything you eat and how you felt, and what was or was not hurting and scale it on o1-5 scale  5 being the worst. and then take that calendar with you to each doctor visit. doctors like hard data and sometimes they needed it written out good luck you are not alone!
tammy
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Avatar_f_tn
Hello fellow Urticaria sufferers. I wanted to share with you my story in the hope that it may help someone. I suffered Chronic Autoimmune Urticaria for 4 years. I saw at least 25 doctors and specialists in allergy, immunology and dermatology clinics and the best they could do for me was to prescribe 60mg of prednisolone daily and a cocktail of 5 different antihistamines. As you would probably know from experience, I ended up a walking zombie....a fat one at that from the steroids! I was told by the head of immunology at the Royal Adelaide Hospital that I didn't suffer from any allergies, I had an unknown internal trigger and I would never find the reason, give up worrying and just treat the symptoms. I was miserable, in constant pain and becoming depressed. I was hospitalised on many occasions with severe angiodema to my face, lips and tongue. It was debilitating.
On one of my routine blood tests, the nurse suggested a local doctor who she knew had helped people find reasons for various ongoing auto immune health complaints. She said he kept searching until a cause was found. So I booked in (5 month waiting period). Off I went in the knowledge that this was the final try to help myself. He took one look at my past 5 years of blood test history and pinpointed the reasons behind my Urticaria. I will list them in a moment in case it gives anyone a new idea or something else to explore. Needless to say, I have now been hive free for 6 months and am in perfect health! These were the reasons for my hives, they may not be the reasons for yours but I hope it helps to explore the possibilities.

Insulin resistance: my body was not processing carbohydrates at all. My blood sugar was up and the more carbs went in, the worse it got until....hives.
Remedy: Glucose tolerance test to confirm and a high protein, low GI diet.

Thyroid: my thyroid function was Normal, which means it was producing good levels of T4 hormone ( an inactive hormone) my liver however was not converting it to T3, the active thyroid hormone. So essentially, it was as if my thyroid wasn't working at all. Ask your doctor for a T3 test, they will not routinely test!
Remedy: A prescription of T3 thyroid hormone taken daily. This speeds up your metabolism and regulates your blood sugar.

Vitamin D: very low levels, this can lead to hives. I now take 100,000 mg per week. To be tested again in 3 months.

Vitamin B12: very low, I take a 5000 mg supplement every day.

Cortisol Level (stress hormone): very high which affects your blood sugar balance, I take an Indian herb supplement called ashwagandha every night.

So within a week of all of this my hives disappeared. I have not taken any other medication at all for the last 6 months. I went back to my miracle doctor yesterday and all my levels including insulin and blood sugar are back to normal. I guess my point is, your body does not react with huge painful welts for no reason, keep searching, scream and yell until you find someone to help you find a cause, there is one!
Good luck, I wish you all the best.
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For everyone suffering from autoimmune issues I recommend testing for immune system sensitivites to certain foods, chemicals, food additives, molds, antibiotics etc.

Check out ALCAT testing: http://healthmarket.previmedica.com/

I'm considering doing it myself. I hope you all feel better.
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Dani1205 you just descibed my life. I'm scheduled to got to the Mayo Clinic on 6/10, this will be cosly Dr trip for me but I cant put a price tag on this. I have seen aaprox 12 Doctors and had tons of meds like your given. 6 years of this pain and chronic itching. I know there has to be a reason I just need the right Dr to find it
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Who did you see and what state are they located in?
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Who is the doctor you saw? Thanks
Susan
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Hi Roberta,

My wife has idiopathic urticaria for about 7 years now. She has been on and off antihistamines since 2006. She has also been treated with prednisone couple of times. Believe it or not, every time she takes an antihistamine (Clarinex, Xyzal, Zyrtec or Benadryl) her symptoms worsen considerably.
You are probably asking: Why would she take it if she knows it is going to make it worse? The answer is: Because we don't know what to do, and that is what several doctors told us to do.
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Hi everyone,


My name is Tigran and I am writing this on behalf of my wife Taguhi who suffers from Idiopathic Urticaria since 2006. She is 37 years old.
I am very glad we came across this blog. We were always thinking that her case was unique and unusually severe but after reading many of the posts we realized that it is not so. Many of you guys describe exactly the same symptoms in terms of severity and longevity.
She is a strong person that learned to live with it and handles it much better than I would probably do. The only thing that bothers us a lot is that throughout past 7 years a number of her hive "attacks" have led to anaphylactic shock with her blood pressure dropping to 80/40 sometimes even less. She has been rushed to emergency 10-12 times since her symptoms begun. We have also noticed that her blood pressure tends to dangerously drop even if her hives are mild in terms of area they cover or itchiness. We have Epipens everywhere - at home, in my and her cars, one in her purse and another one at her work.
If any of you experienced the same please share with us.

P.S. Please, pardon my English. It is my second language and I did my best to make my post readable :).
Also, I wanted to share what the last doctor, a very nice lady, we saw at UCLA Medical Center. I don't remember her exact words but what she said was that they (doctors) have no idea what causes idiopathic urticaria, and the person who finds it will be nominated for a Nobel Prize. And the advise she gave to my wife was - admit it, try to live with it and be happy.
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hi Dani.. I just got this horrible condition confirmed yesterday. I wake up each morning dreading to see how much of my body is covered in hives that day. I thought it could be my new apartment I moved into (only a month ago), and although I haven't ruled that out, your information makes a lot of sense. I had blood tests done yesterday and awaiting results but will bring this up to the doctor and will buy this herb. Thank you sooo much. I don't even want to go out in public.
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I too have the Histamine induced Urticaria and Idiopathic Angioedema and was on an 18 month Medical Experiment of Xolair and after my 1st month on it, I was free and clear completely of any swelling anywhere. Now that my trial period is up, my cost is $1600 per month... I needed 2 injections per month.

I will admit, it was the best thing I ever had. I can only pray and hope that these pharmisutical companies will find a way to come down on the cost of this medication.

Good luck!!
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I've had this since 2001. It burned itself out in 2003 but I have had repeat outbreaks since then. My medications have included every steroid on the market, every antihistamine made and they still come. Yesterday I went to a new doctor who actually specializes in CIU. It's something in our blood friends, something we can't control, but something that can be controlled. There is no cure and thankfully we won't die from it. We may die from the drugs we have to take, but I'll risk that.
My latest breakout is on my FACE! It's horrible when I look at myself in the mirror and the face looking back at me has a wheal roughly 2" in length and diameter. That's in addition to the many individual hives on my face and lips. I look like I have the measles.
My new doctor has me started on Ranitidine and Doxepin. 4x's daily on Ranitidine and 1x daily of doxepin. If this doesn't work, and he's pretty sure it won't we'll use another combo. I feel more confident with him, knowing that this is his specialty and also molecular biology. He's also a board certified allergist. HE KNOWS our disease! My dermatologist referred me to Dr. Clark, since he felt I needed more than he was able to offer. I had to wait a month for an appointment with Dr. Clark and I'm glad I did.
CIU has caused me to miss many happy events in the last 12 years. Let's hope I don't have to miss more.
I look forward to hearing all of you are successful with your treatments. Until then, all we can do is hang in there. Be well.
Marge
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You need a different doctor. I've had CIU for over 12 years now. I too have taken every med on the market, including prednisone and triamcinolone injections. They're good for a couple of weeks. Yesterday I went to a doctor my dermatologist recommended. He is a molecular biologist, dermatologist and allergist. His name is Dr. Clark and he is here on Long Island. He specializes in CIU patients. He's done studies on the disease. I am thrilled that there is a doctor who knows, truly knows what we're going through. Although there is not cure, he will be using a combo of drugs which are known to calm CIU down, maybe even make it burn itself out. He explained that we carry certain proteins in our bodies(blood) which serve as a trigger for hives.
I hope you can find a doctor like I did and I hope your dermatologist will recommend you see a specialist. Most of these doctors are associated with medical schools and have done extensive work & research with CIU patients. Good luck. I care!
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Dear all:

I feel your pain.  I am a mother of 10 years old boy.  My son has hive since he was 3 years old.  We try all the medication that you can fine in Walmart or Target or doctor.  He has been on drug(antihistamine) for every day for 7 years already.  It's breaking my heart when I hand him the medication every morning.
His case is VERY VERY VERY bad.  He has hive 24/7.  He can not live without drug.  I am very worry about all his body part because the long term medication.  He is very young and has long long way to go.
My mother has the same problem  but not that bad like my boy.  Not long ago she start to try one simply Chinese dish that people told her may be she will be cure.  
I finally cook for my boy but I really did not think this will be help.  Well, my boy already on drug for 7 years.  Not any Dr. can help beside just give him drug.  
After my boy start to eat this Chinese stir fry--chinese sesame oil plus chinese brown mushroom plus beef or pork every day for 2 weeks.  Something happens. I could not believe my eyes.  His hives improves a lots.  Again, I can not believe it!!  
I cook a small dish so he can eat few bits every morning every day.  I know it's grose if you eating the same thing every day.  But think about that. This is your medication every day.  Eating real food it's better than you are talking drug.
And I know this is not the "western food" that you used to it.  I am not selling any oil or mushroom or meat.  I post our story it's because it really helps my boy so far for now.  I hope this dish can help my boy for ever.  Not just short time.  It's worth to try.  
I am reading every one's story I feel very very sorry for you all.  I am oftenly blue and  depres because my boys hives.  
Please google Chinese sesame oil(or any sesame oil you can find), Chinese brown mushroom(or any  brown mushroom you can find, I some times buy the giant brown mushroom in Sams Club in veg. area ) and stir fry with beef or pork.  

Things you prepare:
Chinese brown mushroom
Chinese sesame oil
Beef or pork

Heat the sesame oil first than put the meat in and stir the meat until the meat is cooked.
Than put the brown mushroom in than stir every thing until it cooked.  Add more sesame oil if you need it.

Dear all, I hope this can help you.  You can take a break from drug.  Best wish to you all.
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Dear all:

I feel your pain.  I am a mother of 10 years old boy.  My son has hive since he was 3 years old.  We try all the medication that you can fine in Walmart or Target or doctor.  He has been on drug(antihistamine) for every day for 7 years already.  It's breaking my heart when I hand him the medication every morning.
His case is VERY VERY VERY bad.  He has hive 24/7.  He can not live without drug.  I am very worry about all his body part because the long term medication.  He is very young and has long long way to go.
My mother has the same problem  but not that bad like my boy.  Not long ago she start to try one simply Chinese dish that people told her may be she will be cure.  
I finally cook for my boy but I really did not think this will be help.  Well, my boy already on drug for 7 years.  Not any Dr. can help beside just give him drug.  
After my boy start to eat this Chinese stir fry--chinese sesame oil plus chinese brown mushroom plus beef or pork every day for 2 weeks.  Something happens. I could not believe my eyes.  His hives improves a lots.  Again, I can not believe it!!  
I cook a small dish so he can eat few bits every morning every day.  I know it's grose if you eating the same thing every day.  But think about that. This is your medication every day.  Eating real food it's better than you are talking drug.
And I know this is not the "western food" that you used to it.  I am not selling any oil or mushroom or meat.  I post our story it's because it really helps my boy so far for now.  I hope this dish can help my boy for ever.  Not just short time.  It's worth to try.  
I am reading every one's story I feel very very sorry for you all.  I am oftenly blue and  depres because my boys hives.  
Please google Chinese sesame oil(or any sesame oil you can find), Chinese brown mushroom(or any  brown mushroom you can find, I some times buy the giant brown mushroom in Sams Club in veg. area ) and stir fry with beef or pork.  

Things you prepare:
Chinese brown mushroom
Chinese sesame oil
Beef or pork

Heat the sesame oil first than put the meat in and stir the meat until the meat is cooked.
Than put the brown mushroom in than stir every thing until it cooked.  Add more sesame oil if you need it.

Dear all, I hope this can help you.  You can take a break from drug.  Best wish to you all.
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Just like many of others on this site, I have autoimmune diseases - thyroid diagnosed in1975, vitiligo started about 1990 and now hives that I have self diagnosed as autoimmune. I have been getting the hives for about 6 months now. I have traveled frequently during this time (environmental changes) and have eliminated many things in my diet but to no avail. I have appointments pending with dermatologist and allergist but feel this is to just to gain a few more opinions and maybe rule things out. I have always been healthy - stable acceptable weight, relatively active and for the most part eat healthy (usually cook at home). I have watched the Sick Fat and nearly Dead doc and while inspiring for weight loss it did't focus much on the urticaria, which was a different type than autoimmune. I am dealing best I can with the hives with occasional antihistamines but they have increased to the point they have significantly impacted my life style. I do not want to be on drugs that I worry will just cause more problems. I spend hours a day on the net looking for ideas. I am posting now with this in hopes of encouraging everyone to post any healthy option that works for you. Sounds like most of us are up for trying just about anything!
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I'm in adelaide and already seen 5 doctors this week (just to get something to stop me itch) I really don't want to scratch anymore nor gain weight on the 50mgs of prednisone... Who / where can I find this god send of a doctor?
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Hi everyone. Chronic urticaria and angiodema for almost six months now. Tried: benadryle, zyrtec, zantec, xyzal, hydroxyzine, prednisone and singulair. The prednisone works but I will now only take it if my face swells, the weight gain *****! I thought the singulair, my most recent try, was working. Couple of good weeks, then bam! this morning covered.

I've been tested for every allergy known to man, my thyroid, liver, hepatitus (hepatitis), mono, had my IUD removed, lupus...all normal.

I've seen my PCP numerous times, dermatologist, allergist, ER docs, gynocologist, dentist, endodontist and the eye doc. Nothing.

The immunologist said my biopsy shows signs of vascular something. We are shooting for autoimmune and I need another biopsy done but I just want a medicine that works!! :(
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I was diagnosed with autoimmune disorder a couple weeks ago but no attempt by my allergist to figure out which one it is.  I have had hives for 3 months and 3 days.  I have been on prednisone since.  Every time I try to wean off, I get extreme fatigue and hives all over.  I also take zyrtec and zantac.  The weight gain is horrible.  I look in the mirror and don't recognize myself.  I will continue to work with my doctor and allergist.  But I truly feel hopeless about this. The extreme fatigue is as bad as the hives.  
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I have been suffering from chronic urticaria caused by delayed pressure, heat and cold for 5 years.  I, like most others, have been to countless numbers of doctors over this period with no explanation and no hope for relief.  Recently, I have become antihistamine resistant and literally cannot get away from the itching, swelling and uncomfortable feeling of hives from head to toe everyday.  

You mention a Dr. Clark.  Could you provide more information?  Where is this doctor located, what is their full name?

Thank you!

Niki
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Hi my name is Jess and I first got Urticaria when I was 16 years old after my Nana died I have had it on and off for years I am now 34 and having an eposide after having nothing for 6 years and my docters are usless I am taking Cetirizine 10mg 1 twice a day and Ranitidine 150mg 1 twice a day and have just finished a course of Steriods but the urticaria has came straight back so I don't know what to do I have pain in my chest witch at times in unbearable Please anyone have you any help. I am in Auckland New Zealand
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Hi Jess, Find an immunologist who is treating asthma patients with Xolair and see if you can get put on a plan for injections. Xolair seems to work in over 60% of chronic urticaria patients based on all the research I have done to date on behalf of my wife who has suffered from the condition for almost 6 years. The doctors have no explanation for why the immune system in response to stress (it can be an infection, a fracture, almost anything) suddenly starts attacking the body. Xolair is a biologic and very expensive. If New Zealand has national health insurance you may be able to get it subsidized. I know even with our national health system here in Canad, Xolair is not on the formulary for treating hives, just asthma. But it works. Cost to us about every two to three months is $750 Canadian per shot.
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Hi Jess
I had the chest pain that you mention and it was quite frightening.  I have been to emergency to check that I wasn't having a heart attack and have had endoscopy and stress test, all showing nothing wrong. My Dr says you can get urticaria in the oesophagus and another possible cause is inflammation of the cartilage around the ribs.  I have had no chest pain for some time and have been taking 300mg ranitidine twice a day - double your dose - as well as doxepin, prednisone, methotrexate, telfast, singulair.  Also I have been on a course of Xolair injections - one a month for 4 months so far.  Recently I have managed to stop the methotrexate and reduce my prednisone dose to 2.5mg per day.  Still get the occasional spot of urticaria especially in hot weather.  I am due to have another Xolair injection next week and may have a 6th injection.  I am not cured but am certainly heaps better and I am hopeful that the additional 1 or 2 injections will do it.  Xolair is costing me $475 per dose.  My pharmacist is selling it to me at cost.  There is also the cost of seeing the immunologist to have the injection, so it is very expensive but I think it is worth it.  I have spent thousands of dollars on medication over the last 4 years, so I see the Xolair as a good investment as well as a very effective treatment for my condition.
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I started getting hives in high school year 2000 from smoking pot, so I stopped smoking pot. The funny thing was that I had been smoking pot for over a year before I developed the hives. After that they went away completely until September 1 2013.
I got a hive on my ear, when I was outside all day without a hat. I thought it was the sun, even though I had been outside all summer without a hat and didn't have any problems. The hives persisted.
I was on a new birth control for about 8 weeks, I thought maybe it was that. During my period week, I didn't take the sugar pill and I was on prednisone. The hives cleared up. The prednisone ended and as soon as I took the regular birth control pill, it hit me like a ton of bricks. I immediately stopped taking the birth control, but it was too late and I ended up in the ER. I started taking a regiment of Benadryl and Prednisone, that helped until the prednisone ran out and then hives came back with a vengance.
I stopped taking the benadryl, too to see if that was causing it. Sure enough, one night before bed I took it and woke up the next morning covered in hives. Ok, so no benadryl.
At this point I had switched back to my old birth control which caused migraines instead of hives. I would actually take migraines over hives any day. Well of course, I started to have major neck pain, I took an excedrin, again, covered in hives. Same thing happened when I took a Zyrtec. I have actually stopped taking birth control, anti-histamines, the only drug I'm still taking is advair for my asthma. This is new, like the last 24 hours of not taking ANYTHING. Of course, I'm an idiot and last night I went in my friends infrared sauna. This is also not a good idea when encountering hives.
Today is day 1 of no anti-histamines, no birth control, no pain medication of any kind.
The stress from the hives has actually resulted in me losing my job, so now I don't have insurance and medical bills are already piling up. I'm not even seeing a doctor or specialist because I can't afford it. Plus, all the fancy drugs don't even sound like they make a difference anyway. Would you rather be on a bunch of drugs all the time or have hives? Sounds like a lot of people are on fancy drugs and still have hives. Plus I'm figuring maybe it's better to let the hives run their course, maybe they will end faster. They will stop eventually right?
Anyway, I haven't really seen anyone on here that is breaking out in hives from the medication. I don't know if I'm autoimmune, but I don't think its related to food. I guess I'll never know if I don't get help.
Honestly, I'm afraid to try any new drugs, they might make what I'm already dealing with, worse. Is anyone else breaking out in hives from the anti-histamines, pain-killers? The only thing I seem to be ok with is prednisone, which my old doctor stopped prescribing because of health risks related to long term use.
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Hi,

I was just diagnosed with CAU (Chronic Autoimmune Urticaria) this last week. I'm already on second-level treatment, and am taking 50mg of Doxepin and 10 mg of Montelukast as well as up to 4 Zyrtecs a day (a LOT of antihistamines). I'm meeting with my doctor on Tuesday since my body is so resistant to antihistamines, and we are going to talk about Xolair as the next step. I'm willing to do anything that will work, but I'm aware that this treatment is very expensive. Along with the hives, I also have angioedema, and I have flare ups every single week. The hives are concentrated around my eyes, and the swelling makes them look huge. Not only does it look terrible, but I feel even worse. My eyes are itchy, watering, burning and my eyelashes fall out. The hives spread down my face and neck, and sometimes, to my arms, legs, and back. It's very embarrassing and I'm getting so tired of the side effects. Prednisone is the only thing that seems to be working, so I end up taking it weekly. This has been going on since July '13, so 4 months now. Very frustrating stuff, as you are all aware of that. I know this is going to be a life long thing, but I just want to get it under control.

I'm a 19 year old woman in college currently taking 21 credits. I have no doubt that stress is a contributing factor to my flare ups, but frankly, there's nothing I can do about that right now. Finals are coming up, and I'm not going to see my academics suffer. Anyway, along with medication, I've tried yoga, mindfulness meditation, teas/herbs, supplements, you name it.

I'm posting to see if there's any advice for me. I'm seeing my doctor/going to the university's clinic 1-2 times a week. I just want to manage this without always reverting to Prednisone! Anything will help! Thanks so much!
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Many years ago I suffered chronic hives, hands and feet, every evening mainly.My family doctor in Ahmedabad, India tried many things to control the awful itching,but nothing worked. He decided eventually to try auto blood injections.Withdrawing blood from a vein, then quickly injecting it into my rump. I feel that I had maybe three of these injections, and what do you know,the hives were gone.
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  Hello, Same problem here. 38 and I have had hives from a few all the way up to several trips to the ER because they get so bad my eyes swell shut every day for 7 years now.
   Triggers for me are stress and excess drinking ( meaning if I have more than 2-3 drinks) Also they are always worse when its period time.
    In addition to the daily  hives for 7 yrs straight I now have other strange symptoms and keep getting more. These are hair loss ( tons when brushing or washing) night sweats, insomnia, center of chest during a bad flare up feels like cramping, my toes are now usually blue and ice cold and my wrists and hands have lost so much strength I have to take breaks if I put my hair in a french braid ( its not long, med length), I'm happy and full of energy about 2 days out of the month. The rest of the time im edgy, irritable, cant focus or remember things and have developed large blood clots during menstrual cycle.
       I'm on a mission to get some answers, on my third Doctor and allergist has confirmed it is autoimmune disease. But which one is what I want to know????????? Any one else have any ideas???
    
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I have had Chronic Autoimmune Urticaria for 21 years now (I'm 42), and mine is hereditary.  I remember as a kid watching my mom suffer and having to grab her "itch pills" for her.  At first when I started developing hives, I would take one of her pills and it helped within 20 minutes.  Sadly, they discontinued it (Polaramine), and every allergist I have seen has sworn that the H2 antihistamines are better, but nothing has ever worked as well as Polaramine.  My mother went into remission for probably 10 years but since Menopause she has started having intermittent hives again, although not daily or severe. I keep hoping that one day I will go into remission, even if it's only for a few months, just a little relief would be great!!!  While I have tried almost everything over the last 20 years, not much seems to make much of a difference (my last allergist wanted to put me on Cyclosporine but after doing some research, I opted against it.  I have a small tumor on my liver, and don't have a gall bladder, so the potential liver issues are concerning).  Like most, I have had my share of bad experiences with Prednisone and that is no longer an option either.  I've read that any dose of Zyrtec over 20mg is not effective, but I have had limited success in taking 40-50mg per day, but I have to keep zyrtec consistently in my system daily in order to keep the hives at a tolerable level (If I dare go more than 24 hours without, I am bed ridden with hives).  I have found (completely by accident) that a raw foods diet really does help, and have recently eliminated gluten, which also helps.  So I'm diving in full steam to a 100% gluten free diet to see what the next few months bring.  Years ago I cut out caffeine, HFCS and have started eliminating all GMO's, dairy and eggs as much as possible.  I try to make my own everything, and have started noticing a difference.  I'm hoping once my body is fully detoxed from everything that I will see a significant difference in my condition.  My heart goes out to everyone that is suffering through this... it is often times not only debilitating but depressing.  I will post back my results.  All the best~Chris
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I feel for all of you! Diagnosed with CAU in Sep 2010 (although symptoms started late 2009) and have been on almost every drug out there: Doxepin, Loratadine, Dapsone, Colchicine, Tacrolimus, Azathioprine, Zyrtec, Prednisone, Singulair, the list goes on. Am currently taking 20mg of Xyzal, 360mg Allegra, 300mg Ranitidine, 25-100mg Hydroxyzine as needed, and am getting IVIG infusions monthly (about to increase to every other or third week). The IVIG treatments have been my saving grace. Mine is cause by anti-FcE Receptor autoantibodies (numbers on the blood test were off the chart).

I've had dermatographia all my life, but the CAU didn't actually start until later in life. Unfortunately, now, I also react to almost everything: heat, cold, pressure, you name it I'll probably react to it. Oddly enough, I have almost NO "true" allergies, only wasps/hornets/yellow jackets, a couple of trees, grasses, and molds???
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Hi! I would love to know how about the turmeric, did it cure u??
And did u ever try to do the juice fast from the film?
  
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Hi
How is your wife doing? Is she still getting the shots? How are the side effects? Im considering trying this any information will be helpful
Thanks
Lizi
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I'd love to hear an update. I had two rounds of Xolair (insurance covered all but $200.00 of the 300mg and I found a foundation that sponsored me for the remainder).  My first dose seemed to help for about two weeks.  The second dose (I was full of hives again by this time) didn't do a thing for me.  They want me to try a third, but the pain and fatigue don't seem worth it if the Xolair isn't helpful.  The only thing that seems to help me is Prednisone, but after three rounds they want me off it and on something with less side effects. I'm not responsive to any combination of anti-histamines tried thus far. Next up is an auto-immune suppressant.  I've always been a social person,  but lately I'm a hermit.  I itch constantly, am covered in huge red welts and ache all over.  Just hoping to find some relief!!
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Any new updates?
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I have now had 7 Xolair injections, the first few 4 weeks apart and more recently we have been stretching this out to 6 or 7 weeks. I still find that a month after the injections the urticarial begins to come back, particularly on the wrists and hands where it is quite itchy.  However, I have reduced my other meds considerably.  Am now on 300mg ranitidine daily, 2mg prednisone daily, 180mg telfast daily, 25mg doxepin daily, 10mg singulair each second day. I have just returned from a holiday to Cambodia and Vietnam where it was very hot and humid and I had no problem at all, except one day when I forgot my morning pills. I timed the Xolair injection to get the best outcome while overseas.
My Dr says he finds mild urticarial resolves after 1 or 2 Xolair injections, moderate urticaria after 4 or 5 and severe after 9 or 10. It looks like I am at the severe end of the spectrum, but am hopeful it will soon go away completely.  It has been expensive paying for the Xolair injections but worth every cent.  I am completely symptom free for 2 or 3 weeks after each injection (takes about a week to kick in I find) and my quality of life is so much better.
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Avatar_m_tn
I plan to start shots in 2 weeks.  Have you had any side effects?   They added singulair to my other treatments and I am fatigued.  I am hoping that Xolair doesn't induce fatigue.
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Avatar_f_tn
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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Avatar_m_tn
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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Avatar_m_tn
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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Avatar_m_tn
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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Avatar_f_tn
I find it usually takes about a week after the Xolair injection until I am symptom free.
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Avatar_m_tn
How are the hives now?
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Avatar_m_tn
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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Avatar_m_tn
That is good to know.  My doctor is telling me it could be 2 to 3 shots.
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Avatar_f_tn
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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Avatar_m_tn
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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Avatar_m_tn
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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Avatar_m_tn
Did they say what the ANA number was 1:40 or 1:120...something like that?
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Avatar_m_tn
Texas here too...  what did your allergist say?
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Avatar_m_tn
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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Avatar_m_tn
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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Avatar_m_tn
Check out melscure.com
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Avatar_m_tn
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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Avatar_f_tn
I put this post earlier but cant find it now
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Avatar_m_tn
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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Avatar_m_tn
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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Avatar_f_tn
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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Avatar_f_tn
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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Avatar_f_tn
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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