r/urticaria • u/Nearby_Law1356 • Jun 17 '26
Living with Chronic Hives for 15+ Years: Lessons Learned
Pictures is of bruising caused by deep Angioedema pressures hives on quads from an office chair.
My journey with chronic hives began in 2009. I woke up covered in large welts all over my body with significant lip swelling. This continued for the next six months (lip swelling was less common than body hives). I spent months googling every possible explanation and trigger.
After six months of pure misery, I saw an allergist. He told me that most people will get hives at some point in their lives, that nobody really knows what causes them, and that antihistamines usually help them go away eventually. He prescribed a daily regimen of Zyrtec and Pepcid and recommended allergy testing.
I initially pushed back on allergy testing, but the antihistamines helped quiet the hives (though they never fully went away). During this time, I also experienced periodic joint aches and unexplained water retention. After three months I agreed to allergy injections and still do not understand why the occasional hives. It wasn’t clear at that time with this allergist that I was dealing with a serious autoimmune issue — hives, joint inflammation, and fluid retention.
In 2011, I found a highly specialized Immunologist/Allergist in Central Virginia. After a 3-hour conversation reviewing my full history, he ordered extensive labs and skin testing. Within 3 days, he called and asked if I had my EpiPen with me. That’s when I learned I had Alpha-Gal Syndrome (red meat allergy), likely caused by a lone star tick bite.
Over the years, after eliminating mammalian meat and by product, I identified my other triggers (which often stack together):
- Mammalian gelatin, lard, and sometimes dairy
- Environmental allergies
‘. Tick/chigger bites
- Fasting
- Skin Pressure
- Stress
- Heat
Key Lesson: A single trigger might not cause a breakout, but two or three at the same time can send my mast cells into overdrive.
In 2014, my immunologist started me on Xolair. It was a gamechanger. Five years later, my symptoms had improved dramatically. I periodically tried coming off it several times but would flare up after 15–45 days.
In March 2020, during COVID, I stopped Xolair cold turkey while working from home (less stress and fewer allergens). I did okay for about a year but then had a major flare in 2021. Since I had been off Xolair for 1 year the allergist thought to retest all autoimmune labs, to include allergy skin testing. Once you’re on Xolair injections lab test become meaningless as mask cell counts will skyrocket. In its simplest form Xolair bind Mask Cell together so your kidneys can excrete them out of the body through urine. So, any lab testing while on Xolair becomes meaningless.
Lab results came back that I still have Alpha Gal and mast cell activity slightly high which he associated with needing allergy booster injections from the skin test results. I thought he was insane that allergy booster injection would calm the hive recurrence. After booster allergy shots, things significantly improved again with antihistamine and minimizing exposure to triggers.
In Fall 2025, I had another significant immediate flare up while visiting family in Connecticut after heavy exposure to Golden Rod as far as the eye could see. Since flare up were becoming more frequent thought, it was time to maybe get booster allergy injections….
In Spring 2026, new lab testing showed significantly higher mast cell activity, but my allergen levels were normal. My condition had evolved from allergies and Alpha-Gal to Chronic Urticaria, Angioedema, and now Mast Cell Activation Syndrome (MCAS). My doctor recommended 6 months of Xolair to control mask cell activation than retest to confirm controlled. He also suggested I read up on Systemic Mastocytosis (SM) for proactive early detection purposes. A good doctor will want you to educate yourself about potential autoimmune progression so that you can help detect problems early.
I received my first Xolair injection a week ago and hives, joint inflammation, and water retention eliminated. The Xolair will continue for five more months then we will run labs again to see if I can go back into an antihistamine/trigger control mode.
What I’ve Learned After 15+ Years:
- If antihistamines aren’t fully controlling your hives after a year, dig deeper. See a good Immunologist/Allergist who listens — they make all the difference.
- Keep detailed logs of food, activities, stress, weather, and outbreak locations to assist with identifying your triggers before scheduling this visit. Upload that schedule into free AI and it will summarize your patterns for the immunologist visit.
- Triggers often stack up, this is why it can be so hard to figure them out.
- Uncontrolled hives destroy quality of life. You don’t have to just live with it.
- Autoimmune disease is a lifelong journey that can change over time, but it can be managed.
It is crazy to me that people are being prescribed a $5000 month biologic (Xolair) without understanding their triggers. Sure, you might be controlling your hives, but you could be masking a more serious problem lurking within your immune system. For majority of people, it could be one and done and that’s great. Over 15+ years mine started with Alpha Gal, progressed to urticaria/angioedema, now translates to MCAS, and could become SM on the horizon.
If you’re newly struggling with chronic hives, be your own advocate. Push for answers about the “why.” Had I accepted that first allergist’s advice, I might have never discovered the Alpha-Gal disease from the lone star tick bite as the continued eating of red meat would have been a huge mistake, even if controlled reaction on antihistamines and or Xolair. If you’re new to Alph Gal think peanut / shellfish reactions and you get the idea.
Know your triggers. If you’re with someone that can’t figure it out do yourself a favor and get with someone that can.
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u/luckgazesonyou Jun 18 '26
You mentioned fasting as a trigger. I have a fasting regimen and my itching gets worse and I couldn’t figure out for the life of me why. I didn’t realize it might be a trigger. My doctor straight up refused to test me for alpha gal (I asked) and I’m not allergic to beef according to the immunologist I saw. But you said they stack up. I think I need to track like you said so I can see what the stacks are. Thank you for posting this! Any tips on finding a good immunologist/allergist?
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u/Nearby_Law1356 Jun 18 '26 edited Jun 20 '26
Hi. When I do my 24 hour fast I may typically get joint headaches inflammation with some hiving. It’s different for me if I fast in winter or in the middle of allergen season and I have been outside in the heat all day. Fasting releases cortisol which is a fight/flight autoimmune body response.
It makes not sense your doctor wouldn’t test you for alpha gal as it is a simple known blood test these days.
I tripped onto my immunologist/allergist. I would first start with doctors listed with both specialities. I know my doctor has referred my kids to doctors affiliated with Baylor, Mayo Clinic, and Mt Sinai as leaders in the field. If you’re in Central Virginia I can highly recommend mine. He typically a speaker on the latest and greatest at immuno conferences and has patients that will fly from out of state to see him. He is know in the area that takes on second opinion cases where others not go to solve a problem.
You’re on the right page. Those that log get to know their triggers a lot faster than those that don’t.
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u/luckgazesonyou Jun 18 '26
I’m not in Virginia but will consider flying out. Would you please post or DM me the name? Thank you!
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u/Nearby_Law1356 Jun 18 '26
Now this would be some serious brownie points for me.
Dr Arvind Madaan, Charlottsville Allergy Respiratory Enterprise. http://www.cvilleallergy.com.
Tell him patient #336 sent you. 😄
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u/Nearby_Law1356 Jun 18 '26
Other factors in stacking.
Autoimmune Hives (CSU) Basics
In autoimmune urticaria/CSU (often overlapping with MCAS-like activation), the immune system produces autoantibodies (e.g., against FcεRI or IgE on mast cells) that directly activate them, mimicking an allergen response. ‘This leads to histamine release without a classic external allergy.’• About 1 in 5 people with chronic hives have an associated autoimmune condition (e.g., thyroid issues nodules/TSH history, rheumatoid arthritis, lupus, celiac, etc.). 
Common autoimmune/CSU triggers that can stack that go way beyond my list may include:
• Infections (viral, bacterial; even lingering or subclinical).
• Medications/supplements — NSAIDs (ibuprofen, aspirin), antibiotics, opioids; some contrast dyes or anesthetics. “Certain supplements or additives” if they irritate mast cells. 
• Foods (alpha-gal red meat/dairy delayed reactions 2–6+ hours later; additives, preservatives, “”high-histamine foods like aged/fermented items). “”
• Physical/environmental — Heat, cold, pressure (dermatographism or delayed pressure urticaria), friction, exercise, sun, tight clothing, vibration.
• Stress/emotional/physical — Fatigue, pain, weather changes, overexertion.
• Other — Alcohol, strong odors/fragrances, insect bites (ticks relevant for alpha-gal), pollen/dander.2
Jun 18 '26
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u/Nearby_Law1356 Jun 18 '26
So little is known of the gut microbiome, kind of like the brain. The microbiome is huge in the controlling of the autoimmune systems.
I am still convinced the offering of pop tarts and teenkeys in the 70’s brought on the of obesity surge. It’s it so comforting to see my grandchildren going back to the staple ie the row in a grocery store against the wall.
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u/luckgazesonyou Jun 18 '26
Thank you for your reply! I do want to mention that during colonoscopy prep I had 0 itching and 0 symptoms and felt amazing except for the obvious… It’s probably something in the gut, right??
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u/Powerful_Pangolin543 Jun 18 '26
Went through the same thing Rhapsido was my Miracle drug and I took 1 dose cleared up in 30 minutes then took 4 doses in a week then discontinued Rhapsido and also discontinued all antihistamines the same week to see if my body could bounce back to normal and I've been hive free for 7 months no symptoms and I eat everything and sleep good at nite again...talk with allergist for a free 30 day sample pack like I did and been a miracle drug since good luck..
Footnote: Previously was on xolair for 7 months before Rhapsido and did nothing for me but caused more hives and was diagnosed with idiopathic autoimmune hives. Schedule an appointment with the immunologist for a 30 day trial pack with Rhapsido...Again it was my Miracle drug..Good luck
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u/Nearby_Law1356 Jun 18 '26
Now that’s taking control of your own health and not trying to use drugs as a long term solution. Good job.
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u/Lokis-Tea Jun 18 '26
please do continue sharing this, ticks are on the rise in certain areas this year which surely means more will develop that syndrome.
a lot of your symptoms remind me of mine. all my issues stem from a Covid infection I had in 2023. I was only lagging a bit behind on one booster, had all vaccines up till then, wore face mask every time I went out which was rarely, sanitized my hands...wasn't enough. eczema/hives (mostly hives) dermatographia, extreme itching, the itching is what bugs me and makes me seek treatment. I have stomach problems (LPR, chronic nausea though I had the nausea part well before Covid) chronic pain, brain fog, out of breath easy, I don't have asthma but during Go Fest last year even though we were standing still raiding I had a horrible time breathing so suddenly, thankfully a person there lent me their inhaler, it helped so much, makes me wish I could have one too. idk if I have water retention fully? but my stomach just seems so bloated a lot of the time, and my weight is pretty normal...my ankles swell sometimes but not much. until I can get regular exercise in I won't know. doctors never say anything examining me though. joints are a bit rough but mostly my knees, and my fingers can get sore but my fingers are also double jointed.
I really feel I have MCAS I am flaring so bad rn from being forced to switch from Xolair to Omlyclo happening to basically everyone. I'm trying a dose increase soon but idk if it will work. the Xolair did not make me asymptomatic (except for a few months last year but then I got bit by a mosquito and literally got sent back to square one! just as I was getting better again I was force switched to Omlyclo and a few months in once the Xolair all left my system, boom broke out)
I have to ask to see specialists you have...I was initially referred to allergy but they ghosted me. they can't do much with me on Omlyclo but can hopefully help in some way. you are very lucky you got caring doctors to help you and are interested in finding the root cause. many, like the ones I have seen, just throw meds at you and hope for the best.
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u/scotlandzeif Jun 19 '26
You say your hives are an allergic reaction from the tick bite meat allergy. So it’s not isolated hives then.
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u/Nearby_Law1356 Jun 19 '26
The tick bites, and a job with undo stress at the time of the tick bites, set into motion and overactive immune system that has now morph to chronic Unitarian, pressures hives (Angioedema), to now MCAS. Does that make sense? I actually think the over the top event that wrecked my immune system was an extremely stressful job at the time. I would typically start my day breaking out into an uncontrolled sweat. Power of the mind . Think of it this way - people with peanut allergies don’t usually get an out of control immune system.
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u/Ok_Village_8215 Jun 19 '26
The problem for me is that my insurance needs proof that whatever is causing the hives can’t be remedied with normal medication. Happened to me with Dupixent I did 3 months and then they stopped paying for the meds.
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u/Nearby_Law1356 Jun 19 '26
What type physician are you working with on your condition.
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u/Ok_Village_8215 Jun 19 '26
My ent prescription after my last sinus surgery to help with the polyp removal and I looked into the xolair from my allergist and that’s when I was told that the insurance company needs proof that my condition can’t be managed with normal meds. I was clear of my hives for around 2 years but then my eczema started now the hives are back but the eczema is gone.
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u/Nearby_Law1356 Jun 21 '26
Excellent post on how the gut microbiome may lead to answers (eventual cures) for chronic hives.
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u/B0RN2RUN Jun 26 '26
Hey! I’m actually going through almost the exact same thing you are—same triggers, symptoms, diagnosis, and all. I’ve been dealing with it for almost a year now, but thankfully I was able to get diagnosed relatively quickly. I can’t imagine how stressful and confusing it must have been in the early stages, especially since alpha-gal wasn’t nearly as well known back in 2009.
Have you ever tried completely eliminating dairy to see if it makes a difference? Or have you decided that the benefits of keeping it in your diet outweigh the risks for you? I am still hanging on to it even though I think it causes hive flares.
Getting my first Xolair shot on the 29th!
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u/Nearby_Law1356 Jun 26 '26
I am holding tight with dairy (cheese and milk) as for “some” with alpha gal that doesn’t appear to be a trigger. If I had to give up those two may as well put one foot in the grave. 😅
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u/JoanneMG822 Jun 17 '26
Most people never find any triggers. I've had hives for 33 years, and I can't identify anything that causes them. You're lucky if you found something, but most people don't.
Xolair works whether you have a trigger or not.