Severe Urticaria (Hives) that don't respond to antihistamines & steroids

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New Member

Date Joined Aug 2013
Total Posts : 1
   Posted 8/18/2013 6:56 PM (GMT -6)   
I am going through a divorce right now and have severe hives on my scalp. It is so miserable to have hives like this. It is very helpful to read these posts and know that I am not alone. I am going to my doctor tomorrow to see what he says. I will try the vinegar rinse in the shower tonight. Any other suggestions would be helpful.

New Member

Date Joined Aug 2013
Total Posts : 1
   Posted 8/23/2013 9:16 PM (GMT -6)   
Mothergood, I also have autoimmune progesterone dermatitis. Can I ask what treatments you tried before Lupron? My doctor (allergist) is trying antihistimines first, which aren't at all effective. Which I already knew, of course, but I do agree that we should try the most conservative treatments first and progress toward treatments with more serious side effects. As opposed to what I want to do, which is cut it out and burn it, lol. In the meantime, I am starting a round of prednosone every 28 days and just itching and itching and itching. And swelling! So any advice you could give me about your treatment and how you arrived at it would be so helpful. Thanks!

New Member

Date Joined Aug 2013
Total Posts : 1
   Posted 8/25/2013 7:23 AM (GMT -6)   
i have read a lot of your comments and i just wanted to share my story. I am a 28 yo female living in rural Western Australia. i have suffered from hives (chronic urticaria) all my life. I have been poked and prodded by many doctors, dietitians, derma specialists and allergy specialists.

I have spend a majority of my life trying not the scratch my skin till it bleeds.

I have found i am not allergic to the certain common foods or allergens that doctors initially think is the catalyst of my condition. I have been put on cocktails of different drugs to (zytec & zantec) to cover different histamine blockers and yet my immune system gets used to these combinations which after a few weeks makes them useless. I have come to the point where i must live with and put up this condition.

Just because you aren't allergic does not mean anything, as stress can be a main cause for urticaria. Corny as it sounds relieving stress can help in a lot of cases, avoid itchy clothes and scalding hot showers. exercise also can help. but one thing i have learn - if you get wheals on your arms or legs - dont hide them - as for me if i hide them as if i am ashamed of myself the wheals before bigger and itchier then ever.

my advice as someone that has chronic urticaria (which can be located over 100% of my body) check and look at what you are eating, exercise and de-stress!!! oh.. and keep trying!!

Veteran Member

Date Joined Jul 2013
Total Posts : 1301
   Posted 8/27/2013 10:17 PM (GMT -6)   
Hi, I found this thread while researching urticaria and any side effects to the medicines that I am taking for it. From what I have read, it seems like the deck is stacked against me.

Two weeks ago, I woke up with hives all over the body. They were not many, but very itchy and all over. I could not see a doctor right away, panicked, and so I drove myself to the hospital. I was given Prednizone and Benadryl. At the time I was on Omeprazole, Amoxicillin, and Clarithromycin. I was told to stop them. The hives lasted for two days and went away. I had used Hydrocortisone the night before for what I thought was a yeast infection on my penis. Two weeks, later (present time) I used the Hydrocortisone for two little bumps that I had in my arms and a few hours later, I was covered in hives. I now realize that it is probably the Hydrocortisone that I am allergic to, but what is strange is that I am now on my third day of taking the Benadryl and Prednizone and even thought they do get rid of the hives for a few hours, they continue to come back. They seem to come back stronger every time. Initially, we thought that it was an allergic reaction to the Amoxicillin but I am unsure now.

The reason that I say that I have the deck stacked against me is that I have Lyme Disease and cannot take Prednizone because it weakens my immune system and the Lyme goes wild. Second, the Lyme Disease has caused me to suffer from Hashimotos, making me hypothyroid. Third, The Amoxicillin that I am taking for Lyme is killing my Flora so I probably have a yeast infection in my stomach. Fourth, I have stopped taking the PPI (Omeoprazole) because we initially thought that it might be what was causing the hives, and so now I have an acid situation in my stomach after being on it for over a year.

I am now taking Benadryl every three hours, Zyrtec once a day, and two Prednizone once a day. I am going to make an appointment with my doctor tomorrow and see if he can help me. I doubt it from what I have read here so far. I thought it was bad enough to deal with all of the issues associated with the Lyme disease and now this.

Lee L
New Member

Date Joined Sep 2013
Total Posts : 1
   Posted 9/23/2013 3:06 PM (GMT -6)   
I had chronic hives back in the early 80's that lasted 6 weeks
Went on a gluten free diet & all worked then.
I had a reoccurrence in 2009 that lasted 6 months, I was determined to discover the cause & would not take prednisone while going form 1 doc to the next. Finally ended up at Mayo clinic after many tests , trips to the ER for internal hives in my throat & an inflamed esophagus, treated with a shot of epinephrine. The rheumatologist ruled out the known autoimmune afflictions & sent me to the dermatologist there.He took a biopsy of some of the hives over my body, after intense testing it came back idiopathic autoimmune issue. His treatment plan is the only 1 that has worked for me, an old drug called dioxipin, normally for depression, it contains 2 histamine blockers H1 & H 2 that typically cause hives.10 mg to start & worked up to 30 over a months time. Then slowly came off it all & was clear till the past 2 weeks.back on the 10 mg , the itching & hives stop immediately. Will stay on for a month
I never read any blog back 4 yrs ago, wished I had, so many folks with similar symptoms, treatments, testing,including the pressure hives.I no longer really care about the cause as long as I can control the symptoms,feel well & continue enjoying life..

New Member

Date Joined Dec 2013
Total Posts : 1
   Posted 12/18/2013 11:25 PM (GMT -6)   
Hi everyone, its comforting to know that we're not the only ones dealing with this. My daughter is 9, let me start off by saying, shes sensitive to alot of things, sunlight, heat, cold, etc. but it's never been an actual allergy. For instance she can get a mosquito bite and it will swell up like she's been bit by a snake. about a week and a half ago, maybe 2 weeks, we got our christmas tree out of the storage room and before I put it up I wanted to clean the carpets so I used my new carpet cleaner and used the sample bissell cleaning solution that came with it, there was only enough to do a portion of my floors with that cleaner. So after everything dried and we got the tree up my daughter and son (like they always do) laid under the tree, smack dab on top of the freshly cleaned floor. That was around 3:30-4pm, around 10:00 she came to me with what looked like a mosquito bite, she was scratching like crazy. she got in the shower and by the time she had got out her back and legs were covered, and it wasn't just a rash, these were HUGE raised hives that went the length of her legs. Scared the crap out of me, so I gave her some benadryl and put her to bed with me so I could watch her, about 1 am I opened my eyes and looked at her and her face was covered, arms, almost everything. So I got her up and put her in a luke warm tub thinking something was still on her. This has gone on for this long, last week I took her to the doctor Monday and he put her on prednisone, after 3 doses there was no change, they seem to be the same if not worse so I took her back in Tuesday and he said to give her the full 5 days of steroids before panicking, well she was done with the steroids on saturday and she has broken out every night since then, tonight is the worst, its almost covering her back. I thought at first it was the carpet cleaning detergent, because it was new, I had never used that brand of cleaner before. But shouldn't it be out of her system by now, I went back over the area with plain water, I've vacuumed, etc. Something has to give, It seems to happen mostly at night when she's all covered up, although it did happen once at school while she was on the carpet, the teacher said once she got her up off the floor she started clearing up. And then once at walmart while she had a heavy jacket on, her arms were covered. I just dont get it, there's got to be something causing this all of a sudden, I would be more than happy to get rid of whatever it is if I just knew! If its my husband or my son, they're out, lol! Anyway, thanks for all the stories and suggestions, hopefully we will all feel better soon!

New Member

Date Joined Mar 2014
Total Posts : 1
   Posted 3/4/2014 11:00 AM (GMT -6)   
Hi everyone, yes it is very comforting to hear about everyone story and that some people have succeeded to eliminate the urticaria. I am a very active women (Personal Trainer and Sport Nutritionist) and run almost every day. I eat no process food, shake with only natural ingredients in the morning, no sugar, no gluten, a very very clean diet... Except for wine and cheese on the weekend ;-) I have started my urticaria slowly after coming back from a trip in Roatan, it started with the palms of my hand and after only 2 months, I am now covered everywhere. I tried eliminating the food and reintroducing, cleaning sheet and clothes with Clean detergent. Got tested by allergist and she first put me on
Allegra 10 mg 2x in the morning
with Xantax 150 mg
Zentex 20 mg 2x at night

I called yesterday and told the Allergist it was just getting worse and that I was losing it, not able to focus neither work! She added
Doxepin 25 mg at night

I also have a pain that under my left breast that come and go, almost like stomach burns. It is the first morning taking the new Doxepin, and I am literally covered from head to toes...Do you know how long it takes for the Doxepin to have its effects? I slept a little better but was still itching all night. I also never take medication, I need to be very desperate to take so many now...

I cannot believe that most of the doctors said it is related to stress. I have just started my Personal Training business 8 months a go, I work at home, successful and I could never be as happy in my career... Kids are gone to College, no issues, nice supportive husband... Life was so smooth and good until hives...What is wrong with me? When she told me that some people can have urticaria for 5 to 7 years I bursted in tears... I cannot not live like this!!! We withdraw from our social life, I don't want to see anemone, so depressed and have to cancelled customers regularly because I look too scary or cannot focus :-(

Please help me... Any advises would help. I am desperate for help.


New Member

Date Joined Sep 2014
Total Posts : 1
   Posted 9/9/2014 7:38 PM (GMT -6)   
My itching and rashes started the first week of august on my palms, wrists and the back of my neck. I didnt think much about it as I dismissed it as contact allergy from touching my fig tree leaves while harvesting the fruits for only the second season. After three weeks, it started getting progressively worse. (I had been eating bad especially the third week, too much fried food, coffee and canned drinks) And the weather in Dallas is in the 100s. Didnt think it mattered as I barely went out. I tried Allegra, claritin, bendadryl topical and oral each just one dose with two days in between. Symptoms only got worse. So thinking I need a strong presciption, went to the PCP, who gave prednisone and hydroxizine (Atarax). I was fine the next day. Atarax being an anti anxiety med, even made me feel relaxed and happy which made me think I can take it often as I am generally in a depressive mood. WRONG!! The next day, instead of the small red bumps, I had full blown hives that itched like crazy and made me so sleepy I could not work. Immeidately discontinued the meds and went to see a dermatalogist inspite of knowing better who swore I am allergic to some fragrances. told me to stay from detergents and perfumes and come back to see him after 4 weeks. Yeah right I will see him again. Asked him if my gut health could be in question. he didnt bat his eyelids but didnt look at me in the eye for the rest of appointment.
Came back home and started analyzing the last few months' diet habit. The nurse at the PCP office had mentioned that I was almost running a fever and when I remembered that, it just clicked! This is caused my excessive body heat caused by body heat and the excessive air conditioning which didnot allow my body to sweat when I went outside even for a short time. I had also been eating meat for the last two years after being a vegetarian for 40 years. Even though I rarely ate 4 oz of meat a day, it probablly was too much for my body to handle even with the two glasses of green juice I was drinking yesterday. But again, the ginger in the juice could be elevating my body heat as well. I should have stopped the ginger once the weather got warm.
So I started the regimen of cooling my body down. Castor oil bath from head to toe the first day, the second day coconut oil bath. Sandalwood powder on the hives which got worse at night. One day I took coconut oil bath twice as I had eaten a rather spicy food for lunch. Fourth day into the cooling regimen, I started drinking barley water like a gallon , skipped all meat, ate only raw cucumber and radish salad with toasted cumin and fennel with barely a pinch of salt. Slept like a baby that night. Now that I am tuned into my body, I could feel the heat emanating from under the breasts, palms, ears and abdomen. I know I have to do this regimen for atleast two weeks now. If I go to an Ayurvedic doctor, I know the meds they give me would help me recover fast but I am holding off for now as they dont come cheap in the US.

Jay Fosters
New Member

Date Joined Sep 2014
Total Posts : 11
   Posted 9/11/2014 9:29 AM (GMT -6)   
when I was a teenager I used to get horrible outbreaks of hives. I never found out what exactly caused them, but a doctor prescribed me Zertec and they disappeared almost overnight and never came back. Not sure if it is the same zertec we have today, but it worked like a charm. Before zertec, outmeal baths helped ease the discomfort a little bit, but not much, same with benadryl. The hydrocortisone creams can help some, but they are messy. Sorry for your trouble, let me know if zertec helps.

New Member

Date Joined Jan 2015
Total Posts : 1
   Posted 1/11/2015 3:15 PM (GMT -6)   
I had the same issues without having taken any antibiotics. After seeing many doctors the one that made sense diagnosed me as having Chronic Urticaria due to my Hashimito's Thyroiditis by my ND. The allergist immunologist or endocrinologist didn't have any answers as to why.

I was put on 4 different antihistamines the same as your wife twice daily along with Flonase. I also had numerous steroid shots and my face swelled too. My Naturopath put me on a very low dose of Naltrexone which I still take nightly and other thyroid supplements.

I followed a Hystamine Free diet as outlined on the International Chronic Urticaria Society site. It all started August 20, 2014 and my last breakout was December 8, 2014. I have since stopped taking the antihistamines and am adding foods to my diet. I found I did break out more when I ate foods on the restricted list. Have her try it. It is definitely worth it.

She my also be interested in checking out the Low Histamine Chef for ideas and recipes. I opted for plain high nutrient foods.

New Member

Date Joined Sep 2015
Total Posts : 1
   Posted 9/14/2015 6:35 AM (GMT -6)   
I'm not saying this is the healthiest idea but I have been taking Ibuprofen to help with the itching. Just like it works to reduce pain, it also reduces the intensity of the itching. It is an anti-inflammatory so it may be acting in that capacity as well, but I can't tell. I take 6-800 mg. which might be more than some people would need. I am able to go to work and to sleep by using this. Hope this helps someone.

New Member

Date Joined Sep 2015
Total Posts : 1
   Posted 9/28/2015 3:24 PM (GMT -6)   
I wanted to tell my story to better help anyone with a similar issue. I am an 18 year old female, and after leaving my parents house to start my adult life, I developed a bad case of hives. about a month ago I began to develop what looked to be a contact form of hives, they would seemingly itch and flare up for no reason at all. For a month I tried everything I could think Epsom salt baths, calamine lotion, Benadryl, Zyrtec, Cortisone creams, etc. Nothing seemed to phase my hives, they itched do bad I hardly got any sleep. One night while watching tv I got up to let my dog out and immediately felt the backs of my thighs were covered in hives. Because this reaction was so fresh I immediately back tracked. I thought to myself, "What did I touch? What have I eaten in the past hour?". I then decided to rub every thing I had touched on my arms to test them, but none of my "test patches" reacted with my skin. Then, it occurred to me that I had sat on the closed toilet lid to bathe my dog. I immediately ran back to the lid and sat on it, within minutes my legs were once again completely engulfed in hives. After doing some research I found that some children and even some adults are actually allergic to wooden toilet seats and lids that were either covered in a polyurethane coating or a thick varnish. I clean my apartment with nothing but vinegar and water, so there is no possible way it was a reaction to the chemical used to clean my toilet. I got lucky, no allergy test would have revealed the culprit, and without removing the allergen, no medicine or cream would have worked. Some people suffered for years before their doctors remembered this allergy from their medical books. If you have hives on your back, stomach, thighs, and hands, I encourage you to test out this allergy. No one suspects a toilet seat to cause an allergic reaction.

New Member

Date Joined Feb 2016
Total Posts : 3
   Posted 2/4/2016 10:33 PM (GMT -6)   
See your doctor about XOLAIR injections - mostly symptom free. God bless

Regular Member

Date Joined Jun 2013
Total Posts : 21
   Posted 5/1/2016 3:14 PM (GMT -6)   
Its possi le she has adrenal insufficiency with the whole cyclical thing going on. Ask her doc to run adrenal gland tests.
Nonclonal Mast Cell Activation Syndrom, CYP Genome Defficiency, Kounis Syndrome


New Member

Date Joined Sep 2017
Total Posts : 2
   Posted 9/30/2017 7:17 PM (GMT -6)   
Hey everyone if you are getting hives try changing your bed sheets to 100% cotton polyesters and such contain formaldehyde which is a known to cause cancer and hives and has been also tied to asthma and migraines also. Google formaldehyde free bed sheets.
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