Help for Chronic Urticaria and Angioedema
Last updated: February 21, 2023
I'm so sorry you're here. If I've sent you this link it's because you or someone you love is suffering from chronic hives. I wish I could offer a shorter TL;DR version, but this really is a complex issue.
Let's start with some definitions
Urticaria is just a fancy word for hives, but they refer to a very specific kind of hive. One that creates itchy, raised, red, or skin-colored wheals or welts on the skin's surface.
Angioedema is when the deep layers of your skin swell. It can be mild to severe. Angioedema can affect any part of the body but is most common in the eyes and lips.
These are all photos of me, © Very Mom.
Types of Urticaria
- Acute urticaria – The rash lasts six weeks or less and clears completely. It can come and go within those six weeks, but if it leaves and never comes back, congratulations!
- Chronic Urticaria - The rash persists (or comes and goes) for more than six weeks. Chronic urticaria can last for months or even years. My first bout lasted 10 months, then went away for 4 years, came back for another 10 months, went away for 3 years, and then a mild case came back and has stayed for 4 years (so far).
- Urticaria Vasculitis - Can be experienced in combination with acute or chronic, it causes inflammation inside the blood vessel and can leave a bruise.
- Idiopathic Urticaria - Can be any of the above types; 'idiopathic' simply means your doctor doesn't know what is causing the rash.Most cases of urticaria are idiopathic.
- Spontaneous Urticaria - A newer term I've seen recently, sometimes abbreviated to CSU or Chronic Spontaneous Urticaria. Means the same thing as the more common Chronic Idiopathic Urticaria (CIU). Basically hives that last longer than six weeks and started without clear cause.
- Physical Urticaria - Physical urticarias are disorders in which the hives appear after a specific type of stimuli, such as heat, cold, pressure, exercise, water, vibration, or sunlight. You can have idiopathic urticaria (unknown triggers) but experience some physical urticaria characteristics. For example, my welts would often be more severe or more pronounced under an underwire bra, underwear seams, sock bands, waistbands, etc (see the above torso photo and spot the underwire lines). But the pressure didn't cause the urticaria as the welts would present regardless of pressure. If your welts show up ONLY in specific circumstances, you likely have physical urticaria.
If you just google 'urticaria,' the internet has a pack of lies at the ready. It will tell you it's often caused by a reaction to certain foods and that anti-histamines can help. This may be true for non-chronic, acute urticaria, but for chronic urticaria that lasts months or even years, the cause is often very difficult if not impossible to find. Sufferers can waste a lot of time, energy, and money trying to find a clear trigger.
If you would like to try finding a trigger, eliminating some common allergens would be a good start, but please be aware of your mental health and stop if it feels fruitless:
- Shellfish, tree nuts, milk, eggs.
- Medications such as non-steroidal anti-inflammatory drugs (NSAIDS like aspirin or ibuprofen).
- Pets or exposure to other animals.
- Cigarette smoke or vape use.
- Pollen, hay, dust.
- Scented lotions, detergents, fabric softeners, shampoo/conditioner, soaps, beauty products. (Especially if you have recently switched to a new one.)
My non-doctor note: You can drive yourself crazy here. Eliminating all your favorite foods and bathing without soap is not sustainable. Lots of people who really only had an acute case of urticaria will claim they changed something in their diet or sold their cat and voila! They're cured! When really, their hives would have disappeared in a few weeks anyway. Urticaria is miserable and the desire to try anything 'just in case it works' is high. Watch your wallet, your budget, and your sanity when trying to source the problem and remind yourself it is OFTEN none of these things.Sometimes hives can be caused from things like:
- Stress or anxiety.
- Exercise or excessive sweating.
- An infection like mono (mononucleosis).
- Autoimmune diseases.
- Contact with chemicals.
Again, please use caution here to preserve your own sanity. Most of these triggers with the exception of an autoimmune disease and possibly vaccines would maybe cause a brief, acute flare, not a chronic one. For example, if you went swimming and the chlorine levels were off and you got a rash, your urticaria would not last months or years.
Some cases of long-term urticaria are caused by an autoimmune issue. An autoimmune disease can cause the immune system to attack healthy tissue or cells. However, getting an official diagnosis can be extremely difficult and the treatment options remain the same. If you have other symptoms pointing to an autoimmune issue, explore a diagnosis and treatment, but again, I would strongly caution against the many, many forms of predatory fake snake oil sold on the internet. Someone's guaranteed coffee cleanse or MLM essential oils membership is not going to clear up your urticaria (or your Lupus).
I am pro-vaccinations and do not want to add to any anti-vaxxer hysteria (of which I do sympathize; I was raised by a parent who scared me deeply with sensational vaccine stories and affected how I chose to vaccinate my own kids [they are all current on their shots now]). Here is the official study on urticaria and the Covid-19 booster. For whatever it's worth my anecdotal evidence is: I received the Pfizer shot and both boosters during an active, though mild urticaria & angioedema flare, and did not experience a worsening of my symptoms whatsoever.
Note: There is no real cure for chronic urticaria or angioedema; both go away when they feel like it. Conventional treatments attempt to simply control your symptoms to make life more livable.
Anti-histamines: Urticaria is famously resistant to anti-histamine treatments. Anti-histamine medications are categorized as an H1 or H2 type. H1 types are used to treat allergy symptoms (such as hives) -- think Benadryl or Zyrtec. H2 types are used to treat stomach and digestive issues like reflux disease and peptic ulcers (think Pepcid). Since H1 antihistamines are not all that effective against urticaria, some doctors will try recommending a combination of H1 and H2 antihistamines.
Steroids: Most doctors (especially those without a lot of urticaria/angioedema experience) will prescribe steroids, either oral, via injection, or both. The theory is a round of steroidal treatment can help your body get on top of whatever is going on and calm the histamine response, or at the very least, give you a few days relief. However, studies show that steroidal treatment is not effective in controlling urticaria.
Emergency treatments: When your face starts swelling it can freak you (and those around you) right out. The ER will administer oxygen, intravenous anti-histamines and cortisone, and give you an albuterol (beta-agonist) treatment. Sometimes they'll prescribe an epi-pen. They'll also grill you on allergies, assuming you've had an allergic reaction to something. They'll monitor you while your swelling (slowly) goes down but they aren't going to be able to offer you a cure or any lasting relief.
Salicylate Free Diet - Salicylic acid is a naturally occurring acid in some foods. It's also used as an ingredient in certain products, like aspirin. Some doctors, allergists, or naturopaths may recommend you try a salicylate-free diet if you have chronic urticaria. The diet is very restrictive and difficult to maintain and there is no scientific proof this form of diet (or any other elimination diet including FODMAPs) is of any benefit. Read more about it here.
Low Histamine Diet - This diet may be recommended by a doctor, allergist, or naturopath. Like most specialized diets like this, they are NOT recommended for children and are difficult to maintain. I would not recommend trying this unless you receive confirmation from a real doctor that you are having trouble tolerating histamines.
Celiac/Gluten Free Diet - I think (I hope) the gluten free fanaticism is dying down a little, though for the sake of my *actually* Celiac kids, I'm glad it resulted in more gluten free food options in stores and restaurants. The internet and various fringe 'specialists' felt this was basically a cure-all back in the 2010s. I ended up eating a strict gluten free diet for four years. Initially, I thought it helped, but at the time I was trying many things and it's impossible to know for certain. There are some studies exploring a gluten intolerance or Celiac connection with urticaria, but in my case, an eventual biopsy and further testing did not show I had any kind of allergy or this particular autoimmune disease. I was able to return to a normal diet without any increase in my urticaria or angioedema symptoms. Eating gluten free is more expensive than eating normally (the gluten free market is a multi-billion dollar industry; I'd recommend caution whenever giant corporations are monetizing your health issues; not everyone is intolerant or actually Celiac), if you find a gluten free diet helps, huzzah! But I'd recommend official testing via biopsy and colonoscopy to ensure you aren't flushing money down the toilet in your desperation to feel better.
General Elimination Diets - An allergist or dermatologist may suggest an elimination diet. An elimination diet is exactly how it sounds. You remove everything from your diet and eat something very plain with low histamines and low salicylates, then slowly add back in foods one at a time to see if you react. Elimination diets (including the salicylate-free and low-histamine diets above) are NOT appropriate for children and can cause eating disorders and cause serious nutritional deficiencies. I would also argue that elimination diets can trigger a host of disordered eating problems in teens and adults (it did for me). Risks are extreme especially if you have underlying health conditions.
My personal experience with the above:
Anti-histamines: I tried every available H1 and H2 anti-histamine. What worked best for me was an increased dose of diphenhydramine (Benadryl [generic is fine!]). In a bad hive flare, I would have to take more than twice the recommended amount. I also used the Benadryl cream, buying it by the case-load (again, the generic was fine). The tubes caution not to use it in conjunction with the oral medication, but with urticaria, I had to. PLEASE do not attempt to increase your dosage without consulting your doctor. I am not a medical professional.
Steroids: Steroids would clear up my swelling and hives for a couple of days, but all symptoms would return with an awful vengeance after the steroids were out of my system; it never felt worth it to me. I also had a rare reaction to the oral prednisone (mania), so could not explore extended steroidal treatment. Some urticaria patients are on it for years; please be aware of the side effects.
Emergency treatments - I went to the ER several times when I was afraid the facial swelling was severe enough to restrict my breathing. They treated me like I was going into anaphylactic shock, which I never actually did. Trying to explain my history with urticaria and angioedema with a swollen face was difficult and frustrating (I recommend having something typed up in advance; if your lips are really swollen it's hard to talk). The ER was never able to alleviate my symptoms any quicker than I could at home, though if I was scared about my breathing, it would at least give me some peace of mind knowing I was being monitored. I did get a prescription for an epi-pen, which also never did anything to reduce my swelling or severity of my hives. Urticaria and angioedema are just very different from say, a peanut allergy, and don't respond in the same ways to epinephrine, antihistamines, or albuterol treatments. I was blogging my symptoms at the time, and having an epi-pen calmed down concerned family, friends, and readers... even though it didn't do a thing to help.
Diets: I was placed on an extreme elimination diet by a chiropractor I was seeing who promised he could cure my hives. I ate nothing but cantaloupe for an extended period and lost a dramatic amount of weight (I was recently postpartum) in a very unhealthy way. Firmly set in a dysfunctional 'food is medicine' mindset, I adhered to the diet religiously*. It did NOTHING to cure my hives. My flares were completely random and seemed to have little to nothing to do with food. If I ate absolutely nothing, my symptoms would go down a little, but obviously starving to death was not a sustainable solution.
If you have a deep-seated 'food is medicine' mindset too, I highly recommend Dr. Joshua Wolrich's book Food Isn't Medicine. He's an NHS doctor and nutritionist in the UK. His instagram account is brilliant.
Over the next decade, I would go on to try a salicylate-free diet, a low-histamine diet, FODMAPs, the GAPS diet & other diets that promised to 'heal my leaky gut' 🙄🙄🙄, auto-immune anti-inflammatory diets, a strict gluten free/Celiac diet, various marketed 'cleanses', Paleo, Paleo autoimmune, Keto, Whole-30, Eat to Live, plant based diets, raw diets, and more. I was RELIGIOUS about these and eventually developed an eating disorder called orthorexia where I became obsessed with finding the 'right' or 'correct' foods to put in my body. I became afraid of food* and deprived myself of a lot of joyful living because of it. It is important to note that NONE of these diets cured me, alleviated my hives or angioedema problems, and most that caused drastic weight loss resulted in my gaining back more than I lost in the first place.
* The fear of food included hysteria about organics/non-organics, food additives and preservatives, GMO foods, pesticides, and more. The instagram account Food Science Babe (along with therapy and EMDR treatments) has been INCREDIBLY healing. I highly recommend it if you're even wasting a little bit of energy on diet culture and this kind of life ruining nonsense. She addresses those viral Tiktok videos that are always telling you eating Cheerios will cause cancer; she's very entertaining and has sane, science-backed data.
In short, there are legitimate food allergies out there, but I did not have one. You might, but please be aware of orthorexia, other eating disorders or disordered attitudes about food; unsustainable food hysteria; and your overall mental well-being as you explore options with an allergist. Allergists and dermatologists can sometimes make you feel as though you are allergic to everything under the sun and need to live inside a bubble.
Supplements - This can be a minefield, causing the same kind of disordered problems as elimination diets and cleanses. A patient can waste an extraordinary amount of money on overpriced supplements that promise the world and deliver on very little. Please consult with your doctor on all supplements. Supplements in the US are not regulated and many can interact with your prescribed medications.
- Vitamin D has been clinically shown to alleviate chronic hives. I take it regularly, and agree that it helps a little (along with my regular use of diphenhydramine), but is definitely not a cure. There is no reason to spend a lot of money on some fancy brand. Over the counter at your regular drugstore or grocery store is just fine. Here's some information on dosage.
- Some doctors recommend vitamins B-12 and C. B-12 will only help your symptoms if you're actually deficient, so get tested first. Vitamin C is a good antioxidant and might help reduce allergic reactions, but studies proving its efficacy in treating urticaria are super spotty. I took both faithfully for years and ended up with too much B-12 in my system because I wasn't deficient in the first place. I did not see any improvement with either supplement.
- Quercetin is often recommended, though experts agree more study is needed. Quercetin is a flavonoid derived from buckwheat and citrus fruit. In test tubes, it's a powerful antioxidant, but researchers aren't sure if it functions the same way in our bodies. It's possible but unproven, that quercetin can calm or stabilize the cells that release histamine. I took it for over a year and saw no obvious improvement.
Adrenal testing - This is another minefield and a corner of medicine without a lot of study and therefore a lot of scammers. Regular MDs will generally only pay attention to so-called 'adrenal-fatigue' once you are diagnosed with something more major like Addison’s Disease or Cushing’s Disease, so I initially had difficulty exploring this. I had to go the 'be your own advocate' route in getting my Hashimoto's hypothyroid diagnosed using the resources at Stop the Thyroid Madness, so decided to use their recommendations to order a saliva cortisol test from My Med Lab. My results were so severe my doctor started taking me seriously. I began taking first, some prescribed hydrocortisone tablets, and then maintained with a desiccated adrenal supplement.
Important 'critical thinking' note: Urticaria is extremely uncomfortable and disrupts sleep, which increases the body's stress response. It's a possibility that these hive-induced sleep disruptions caused my messed up cortisol levels and a 'fatigued' adrenal system, and not the other way around. But, I did see an improvement (not cure!) when I started treating the imbalances and getting my sleep schedule back on track.
I will say that when my hives came back for a third time (this time a more mild case lasting years), taking adrenal supplements before the insomnia started seemed to help keep the hives and facial swelling at bay, and stopping the supplements altogether does seem to eventually result in an increase in hives/swelling severity. But this is mere anecdotal evidence with a myriad of other possibilities and explanations. YMMV 🤷🏻♀️
I wouldn't recommend supplementing with adrenal stuff unless you actually test positive using a saliva cortisol test (the saliva part is important, blood tests won't show the same results).
Sauna therapy - Strongly recommend for near-instant relief for non-pregnant teens/adults old enough & medically cleared to use a sauna safely! I stumbled across this article about sauna therapy and urticaria in a medical journal. I was skeptical after years of failed diets and other 'cures,' but decided to give it a try. The article references sauna practices in Scandinavian countries and Russia, recommending a face-temperature of 80–90°C with a humidity of 50–60 g H2O vapor/m3, and completing 2 - 3 cycles of 5 - 15 minutes in the sauna, followed by a cold bath immersion.
My then-local recreation center had a steam sauna but I had no way to measure the humidity or face temperature (what?), and they did not offer a cold bath immersion (though I could take a cold shower after). Wearing a loose towel, I'd spend 10-15 minutes in the sauna, 10 minutes out in the locker room drinking water, then repeat two or three times. The hives would calm down visibly(!!) during the sauna sessions and I would feel so much better overall. I was really impressed. The cold shower afterward didn't see to make much of a difference for me, so I'd shower normally, then use a cooling anti-itch lotion called Sarna (affiliate link, but it's available in most drug stores) along with Benadryl cream.
This worked amazingly well. When we moved and I no longer had easy, nightly access to a steam sauna, I modified the routine so it could be done in a bathtub. I'd fill the bath with the hottest water I could stand (plain water, no additives*) and soak as much as my body as I could handle. I would keep a thermometer nearby and check to make sure I was getting my temperature up to a 'fever zone.' I can't remember exactly, but probably around 103 or 104°F. Instead of getting in and out because of how fast the water cooled and the limitations of my water heater, I'd just stay in for 15 minutes. Upon getting out, instead of rinsing or drying off, I would wrap myself up in a big fluffy bathrobe, put a towel on my head, and get in bed with a hot pad to try and maintain that sauna effect for a little longer. I'd prepare the bed prior to the bath by lining it with towels and sheets I didn't care too much about. I'd stay wrapped up like that for another 15 minutes, and then finally shower normally and apply the Sarna lotion and Benadryl cream.
The bathtub version worked just as well and I continued to do this until my hives calmed down completely. I never tried it in a dry or infrared sauna, but if you have either handy, I wouldn't hesitate to see if it helps. I don't think the sauna or the bath treatments cured anything; I was nearing the end of my second 10-month bout with extreme urticaria, so my symptoms might have tapered off anyway, but the treatments definitely reduced the severity in ways that felt like a lifeline. Along with the sauna treatments, I continued to take the supplements that seemed to be helping, still took as much Benadryl as I could tolerate safely (doctor and pharmacist monitored) and used the Benadryl cream in conjunction with the Sarna lotion on the worst raised bits.
Again, urticaria can severely interrupt your sleep because you're so uncomfortable. With the sauna/bathtub treatments I was able to get good sleep for the first time in several months.
* Lots of online places will recommend adding colloidal (which just means finely ground) oatmeal to the bath. I have found zero studies supporting this for urticaria though there is a note in a medical journal recommending against it due to possible food allergies. In my experience, it just makes a disgusting gloppy mess that you then have to clean up while not feeling your best. It can also clog up your drains. For me, the heat alone did far more to help than any type of oatmeal-infused lotion or oatmeal bath.
Salt water - This is a weird one and might only help because I also have POTS (postural orthostatic tachycardia syndrome) which can cause fainting episodes and strange tremors that look a little like I'm having a seizure. If I'm in an active POTS flare, drinking salt water can calm down the fainting/tremoring episodes within an hour or two. I swelled up pretty large one night (no POTS symptoms) and tried drinking salt water. It seemed to reduce the swelling enough that I could sleep within an hour or two.
If your doctor has suggested you reduce your sodium intake, maybe don't try this one. I put a teaspoon of Real Salt (affiliate link) in a glass of warm water (about 16 oz). Stir to dissolve, then drink. I find if I need it, it actually tastes good. (Regular salt works too, Real Salt just tastes better)
My routine now
After two 10-month bouts with extreme urticaria and angioedema, the first in 2009, the second in 2014, my hives/swelling came back in 2018 (or thereabouts, I can't remember exactly) and haven't gone away. However, this current case (writing this in February 2023) is much more mild. My face hasn't blown up massively huge in a long time, though I can still get some disfiguring lip and eye swelling that can ruin my day and is quite uncomfortable. I wake up most mornings with some level of mild eye swelling that slowly fades by afternoon. My current hive outbreaks seem strangely concentrated on my left leg around the scars I have from my knee surgeries, though they can spread. I generally start to get hives late at night and sometimes they wake me up.
Nightly, I take Vitamin D, two tablets of desiccated adrenal gland (affiliate), two tablets of something called Drenamin (affiliate link), and one Benadryl tablet. There are cheaper alternatives to the supplements I linked, but I keep going back to the two I think make the most impact. If my hives and swelling seem to settle down for a few weeks, I'll stop everything and see how I do. Sometimes I need to take additional Benadryl tablets during the night or in the morning if I have hives spreading or more severe facial swelling starting. I take a few other things that help with POTS and Hashimotos (iron, iodide, magnesium, potassium), as well.
NSAIDs (aspirin, ibuprofen) are VERY weird for me. Sometimes I can take them and it's no big deal. Sometimes I take them and my face swells up. NSAIDs cause my worst levels of swelling these days. They definitely don't cause the problem, but they can make it worse. The inconsistency is very annoying because sometimes I can take Excedrin Migraine tablets for a migraine, sometimes I can't. (My migraines are generally a migraine with aura that can temporarily blind me as my aura looks like a staticky crescent moon that gets larger and larger until my vision in both eyes is obscured.) I also have to be cautious when taking Pamprin or Midol for menstrual cramps; both have aspirin-free versions but it's in small print and the bottles are easy to confuse. Multiple times I have gone to the ER for something else, told them I can't have any NSAIDS, then find myself with a swollen face because they gave me naproxen (another NSAID) in my IV. 🙄
I haven't had to use a sauna/bathtub for hives in a long time, though a hot shower can help if I feel just generally itchy all over. I am healing from orthorexia and try to eat a healthy diet of mostly whole foods (no more obsessing about organics or GMOs), but do not deprive myself of dinners out with friends or the occasional chocolate bar or milkshake. Prioritizing sleep is a big one for me. I feel generally better and have fewer hives if my schedule is regular. I tend to need more sleep than most to feel my best, so try to aim for 9+ hours of sleep each night, lots of things can get in the way of this: solo parenting, stress, anxiety, panic attacks, grief, but I do my best.
I never could tell if stress was a clear trigger for me or not. My husband died very suddenly in 2020 and everyone expected my face to blow up and for hives to erupt everywhere. They didn't, and that was (is!) easily the most awful, terrible, traumatic thing I've ever gone through. Grief has been dreadful, but I don't think my hives/swelling got that much worse. Sometimes I'll have a really hard day and think, wow, I think I'm extra itchy tonight, but stress is never a really clear trigger while lack of sleep definitely makes my symptoms worse.
We did eventually find my cause. After my fourth baby was born in 2009, I hemorrhaged badly during a D&C to remove the miscarriage matter left behind from his fraternal twin who died in utero. I needed four blood transfusions and discovered years later how common transfusion injury is. Even though I received the correct blood type, my body still formed antibodies to what it viewed as foreign cells. This resulted in few different autoimmune problems: Urticaria/angioedema, Hashimoto's, and POTS. Having a diagnosed trigger doesn't assist with a cure, but it is nice finally knowing why these frustrating health problems seemed to develop out of nowhere.
You may never find your cause (it took me YEARS); it's frustrating but not the end of the world, just focus on managing your symptoms in sustainable ways. Urticaria really is the worst, and I think it helps to know you aren't alone. ❤️
Helpful links with more information & support:
- Chronic Urticaria at the National Library of Medicine
- CSU & You - Living with chronic spontaneous urticaria
- Urticaria and Angioedema at AACI Journal
- Hives (Urticaria) and Angioedema at the American Academy of Allergy Asthma & Immunology
- Mayo Clinic Clinical Trials for Urticaria
- Support group for urticaria - There are lots of support groups on Facebook and you may find some locally. Research carefully; many allow spam from people hawking predatory cure-alls. I've linked the one I used to belong to, but haven't been a member for some years. Support groups can be a lovely space to help you feel less alone.
If you got through the whole thing, I hope you found it helpful. You're welcome to email me with questions or if you spot a typo or have some updated information (peer reviewed studies or published medical journal articles preferred, I'm not going to publish snake-oil cures or anything from a site that promotes food/cleanse/diet hysteria). My contact is verymom at the email service google provides. May the force be with you! I wish you itch-free skin and lips of a normal size and shape. xo
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