#autoimmune hives

[xerospaced]

So I get these autoimmune hives that are only present on my neck and when they come they burn like fire, itch like crazy and are soothed by nothing.

I've not had any this year that I can recall. Until a few weeks ago. It didn't surprise me too much coz I've had various symptoms over the past month which have indicated that I am experiencing an autoimmune flare up just relatively low key and slow manageable symptoms that have passed after a few days/a week.

But these hives are NOT leaving! Usually, two weeks, it passes. But it just keeps going. And last night I noticed it was spreading even further.

So I guess ima have to visit the GP on Monday and be like "yo, fucken, help me!" Coz antihistamines and salves are doing fuck all for it and I need it to END.

Tho I doubt they'll be able to do much for me since it's literally caused by my immune system attacking my skin which... how do you even stop that!?

[jamboreeartsupplies]

Spoon cheering me up at a doctor's appointment :)

[quietly-collecting-spoons]

Having a urticaria flair for the first time in years and I’m miserable. I’ve taken double doses of everything I can, taken Benadryl and nothing is touching it. Luckily it started just before my last appointment with the Dr I see about it so she’s aware, but this is so miserable. I’m working the next four days in a row too so I can’t even fall back on Benadryl.

I’ll be sending my Dr a message at the beginning of next week if it’s still going on, but I really don’t know what else to do. I used to be on a steroid prn because it was really good at shutting down hives, but that’s my last resort as I’m Diabetic too and it shoots my blood sugar up crazy high for 18 hrs afterwards.

[im2tired4usernames]

Incredibly hard to believe I'm fearfully and wonderfully made when my own body repeatably on the regular trys to kill me

[kavehpilled]

um. help

[delyldia]

It’s been, thank god, a very long time since it’s happened but this morning has been one of those mornings where I wake up drenched in sweat in too much pain to move. Literally feels like rigor mortis and I have to painfully reanimate my body. It’s so distressing to experience and I’m in so much medical debt from trying to find answers and the whole thing just… blows. Hopefully since I’ve had issues for 4+ years that means it’s not something deadly but…. Yeah.

[puncivilian]

Wild that there's a treatment for plantars warts, some of the most fucking mildly annoying bullshit warts you can deal with, and yet the only reason I was able to get this treatment is because a classmate recommended it to me and I specifically asked about it to the doctor after they recommended the regular freezing treatments that are wildly INeffective. This ointment has a ~75% effectiveness rate by initial accounts, but is only widely used to treat alopecia?

It's wild because just using this stuff correctly can shrink other plantars warts on different parts of the foot. I guess the immune response carries over a bit. I mainly used it on the cluster on my heel but the one wart below my big foot also shrunk even when I wasn't applying it there.

I hadn't used it for a few years and didn't clear it entirely back then, so I'm gonna try and clear them entirely this time around by using salyclic acid as well, I heard that helps effectiveness by reducing the wart skin growth. Gonna keep going until I can't see any more plantars warts.

[johndonneswife]

[reserwrekt]

"Whenever a minor inconvince happens, I just cease to function." Uh, yeah, my doctor and I think I developed an allergy to my essential, life saving, medication. So instead of running around, doing a bunch of tests, and then ultimately being switched back to my only "real" option, which was a med I went off because it didn't work- I just didn't do anything. Just stopped taking the med, and kept going on, sleeping, crashing, burning, flaring, not functioning, to a point my doctor called me to ask if I'm okay and I didn't want to respond, so I just forgot all day and now it's the weekend and I feel like a jerk for not saying anything.

[snarltoothed]

i’ve also broken out in hives 3 times in the past 3 months… like all the other MCAS symptoms i have (which is most of them, excluding the anaphylaxis) i’ve had for years and they could easily be explained by my other syndromes but now i’m getting HIVES? HIVES? on MY BODY? frequently and without clear cause???

i’ve just spent like a year wondering if i have dandruff or scalp eczema or psoriasis that doesn’t show up literally anywhere else on my body. like maybe i should ask a doctor about that but i should probably also switch to head & shoulders :/

[tj-crochets]

Hey y'all! Weird question time, this time about hives. I have to get into some detail in my description of the hives, so it's going below a read more

So I used to get hives all the time. Like, a few every now and then through winter, gearing up to get bad mid-April, and then late June/early July they'd tip over into anaphylaxis, I'd go to urgent care for steroids, and then I'd a month or two of no hives before going into the slowly ramping up low level hives mode again until the next year. I'm pretty sure I have MCAS, I have like all the symptoms of severe allergies and have even been able to pin them down to specific foods but test negative for all IgE allergy testing (besides dust and cockroaches). Since I've been on higher-than-normal doses of daily antihistamines, I almost never get hives anymore My question: do I have the definition of hives right? Are these how hives go for you? My hives were: - raised, red/pink, and noticeably hotter to the touch than surrounding skin - most were about quarter sized, the smallest maybe the size of a pencil eraser, the biggest the size of a handprint - they had clearly visible edges - the ones on my fingers and toes were sometimes severe enough that the swelling of the hive prevented me from bending the joint - extremely itchy - each individual hive lasted about 24 hours, but I had a constant rotating cast of hives - larger hives turned into yellow bruises when the hive went down - they almost always formed on joints first and only spread to non-joints if I was having a bad flareup (hips and wrists first, then backs of knees, fingers, toes, elbows, and ankles, then eyes and ears, then everywhere else, but almost never my chest, back, or stomach) My endocrinologist seems convinced the joints-first hive pattern is indicative of an autoimmune issue, but I have zero issues with my joints* and test negative for RA like three different ways *well. I have mild scoliosis (maybe) and almost definitely dislocated a rib at least once, but those are not really autoimmune related? I also sometimes have joint pain but only when my muscles are so tight they are hauling on my bones and like...that's not the joint's fault pretty much every doc I've seen is just like "yeah you do electrolytes wrong muscles don't like that :/"

[xerospaced]

So maybe I shouldn't be eating eggs or at least scrambled eggs when I have hives 😬

[darkmaga-returns]

Each month, ICAN analyzes the “free text” V-safe data released by CDC. In our latest analysis, we’ve found over 160,000 entries concerning skin issues that V-safe users developed after receiving a COVID-19 vaccine.

When the COVID-19 vaccines rolled out, CDC provided a V-safe app where people could record their symptoms. The attorneys who represent ICAN sued CDC to release this data. The V-safe data revealed over 124,000 reports of rashes; 22,000 reports of hives; 11,000 reports of blisters; 3,000 reports of eczema; 2,500 reports of psoriasis; and 1,500 reports of lesions. Some examples in the vaccine recipients’ own words:

“Severe hives. Started the morning of 1/11 went to urgent care 1/12 at 3am. Raised and red hives. Started on thighs and arms. Eventually covered 90% of my body.”

“Bullous lesions on hands. Slow healing process. Had a biopsy of one of the lesions.”

“6 silver dollar sized psoriasis like patches on my chest and ive [sic] never had any skin issues in my life”

“Had very unusual rapid growing lesion, biopsy done 1/15/21. Suspecting autoimmune process. Requires topical and systemic pain meds.”

“Painful blisters on my hands, feet, wrists and elbows as well as in my nostril.”

“Ulcers on roof of mouth and down throat (not something that has ever happened to me before)”

“Rash all over, hive like bumps on palms of feet and hands, back, stomach, legs, arms, its every where [sic] and very itchy.”

Scientific literature includes many reports of cutaneous (skin) reactions after COVID-19 vaccination. Most skin reactions to drugs are considered to be a hypersensitive immune response involving mast cells, and the preferred treatment is to discontinue the drug.

How does CDC treat these reactions? It blithely instructs people that even if they develop a “red, itchy, swollen, or painful rash” that they can “likely receive another dose” of the vaccine. The only rash it considers to be a concern is one that “required hospitalization.”

ICAN will continue our V-safe analysis and alert you to vaccine adverse reaction patterns that CDC would rather keep secret. We will not stop until all data is publicly available.

[wilsonpussyindulgence]

a couple of years ago, i started having an allergic reaction. i broke out in hives on my legs, and i could not stop scratching. i would wake up in the middle of the night because i had drawn blood. i would sit on my couch and itch and itch and itch. now, i’ve never had this kind of reaction before; as far as i knew i wasn’t allergic to anything other than nickel, which i obviously didn’t have on or around me in any way. i knew whatever it was was in my apartment, because i didn’t itch at work or anywhere else, but i couldn’t figure it out. i hadn’t changed any soaps or fabrics or anything recently.

so i went to my GP, who shrugged and immediately sent me to a dermatologist. this was great to me, because i wanted an allergy test. from onset of itching to seeing this dermatologist, it was probably about four weeks, and while the itching waxed and waned, i was still covered in scabs when i finally saw someone who could help.

so i get my appointment, and i explain to the dermatologist what the problem is. less than a minute into the appointment, she interrupts me. that’s not a real thing i’m describing, she says. it’s not possible.

she takes my arm, and she runs a wooden…i don’t know, tongue depressor? down my arm. it immediately raises in an angry red line.

“you overproduce histamine. take a claritin”

i’ve never had a problem like this before, i say. i would like to get a general allergy test.

“it would be a waste of time. if you are still itching after the claritin, then maybe in another eight weeks.” and she leaves. i waited four weeks and she saw me for about five minutes.

i’m angry, but i take the claritin. it’s incredibly dehydrating on top of the other meds i take, so i take it for a few days and quit.

the itching…recedes. it’s on and off. it doesn’t get as bad as it was in those first few weeks again. i look up what she’s written in my chart. urticaria, common name hives. she diagnosed me with hives. no explanation for why i had a spontaneous outbreak of hives. i simply had hives.

there’s another thing, listed at the bottom, “dermatographic component.” i look up dermatographia. “dermatographia is harmless,” the mayo clinic says, “most people who have this condition do not need treatment. It tends to be more common in teens and young adults.” I am thirty, and I do need treatment. There’s one more thing in my chart: “Urticaria education provided and all questions answered.” Really. News to me.

I am SO frustrated, but the itching isn’t bad enough anymore to keep pursuing it. i am defeated. i still think about it, occasionally, on and off. She is right, about the dermatographia. It’s the cause of what they call “skin writing.” But if I redo that test, making a red line along my arm or even on my leg where the hives were, it doesn’t itch enough for me to scratch it to bloodiness. But I still don’t have any good answers about why, for about two months, I broke out in hives so bad I had to be fully clothed every second of my day.

unrelated to that, i just read about an autoimmune condition that causes you to have random allergic reactions apropos of nothing. it’s fine. no big deal!

[macgyvermedical]

Curious if you know much about food sensitivity testing. My cousin's SIL is purportedly a wellness NP and has their whole family getting their sensitivities checked every 3-6 months with lab draws. I always thought allergy testing was done with scratch test on skin. And like how do you cast a wide enough net to test for everything? I didn't think labs really worked like that? I thought you kind of had to test for specific things and almost like a process of elimination.

It seems as though every time cousin gets tested there is a whole list of foods she should remove from her diet because she is "sensitive" to them. It always feels like that list is whatever she's been eating most recently (and usually that food is something that she used as a replacement for something she was sensitive to last time) for example she cut out cow's milk and went oat because oat was ok on the list. Then all of a sudden oat wasn't ok anymore and she went coconut. Now coconut is supposedly causing trouble. Cousin said she didn't think she was having issues with it but is now looking for alternatives and I'm just worried about her.

When I asked the SIL what the sensitivities mean the response was that it causes inflammation which can lead to skin conditions, weight gain, problems in the digestive tract, or cancer.

Obviously I know food sensitivities exist and that there's a lot of processed garbage in our food the whole thing just feels off.

No worries if you don't want to answer thing or if you don't know. This is partially me venting in your askbox

Before we can talk about what your SIL is probably doing, we have to talk about food allergies, food sensitivities, and how we test for them.

A food allergy is an inappropriate immune reaction to a chemical that is present in a food.

The first type is the "immediate" type. When the food is ingested, the body's immune system misidentifies one or more proteins in that food as dangerous and "overreacts" by creating an antibody called immunoglobulin E. Immunoglobulin E (aka IgE), triggers the release of histamine and other chemicals that, in the extreme excess caused by IgE, cause symptoms like itching, swelling, hives, low blood pressure, difficulty breathing, vomiting and diarrhea. These symptoms can be life threatening. Less severe versions of this can trigger gastritis, brain fog, asthma, and non-life-threatening versions of the symptoms listed above.

Proteins from peanuts, tree nuts, cow's milk, eggs, fish, shellfish, soy, wheat, and sesame cause about 90% of these allergic reactions.

There are other immune reactions and other Immunoglobulins. For example, there is immunoglobulin G, which serves as a "memory" and helps protects against viruses and bacteria. IgG essentially makes an impression of everything that comes into the body. When you get titers drawn to determine whether you're immune to something (a test you might need to get if you work in the medical field), the test looks for specific types of IgG to determine whether your body still remembers the virus or bacteria you were immunized against or exposed to. More about this later.

IgG, along with IgA and IgM can contribute to autoimmune conditions like MS, graves disease, rheumatoid arthritis, and lupus (which are very technically allergic reactions to oneself).

A food sensitivity or intolerance on the other hand is a condition caused when a person doesn't have the necessary enzymes or microbiome to digest a particular sugar or protein in a food. Food sensitivities do not have anything to do with the immune system. Instead, they have to do with digestion. A food sensitivity often results in bloating, gas, diarrhea, and abdominal pain. While unpleasant, you won't die from an intolerance or sensitivity.

While not technically an allergy or a sensitivity, people also may have conditions that are exacerbated by certain foods, such as sugar or wheat exacerbating arthritis.

Now onto the testing. Allergy testing comes in several forms. You can do blood testing for specific allergens by looking for specific IgE allergens. For example, if you suspect you are allergic to peanuts, you can have blood drawn to check for peanut IgEs. You can also do a skin test, where a section of skin is marked with a grid and small amounts of allergens, along with control solutions, are injected into each section. A welt forms if the substance triggers histamine, and means the person is allergic to the substance. Another test is simply to give the food (in a controlled setting) in increasing amounts until the person has an observable reaction.

For non-dangerous allergic reactions and intolerances, an elimination diet can be done, where a person limits themselves to foods they know are completely safe, wait for symptoms to go away, and then start adding in foods one by one and documenting responses. This can take several months but can be worth it for someone who feels they have many foods that trigger unpleasant symptoms.

What your SIL is probably doing:

There are many companies that offer home allergy testing. This is usually done with a card, where someone places a few drops of blood on the card, mails it in, and gets results for between 90 and 100 different substances.

The problem is, home allergy tests do not test for IgEs. They test for IgGs. Remember that IgGs don't have anything to do with allergic reactions- just the presence or absence of a recent ingestion. All IgG testing does is say "yup, dude ate some peanuts recently".

You might then connect "hey, when I eat wheat my arthritis gets worse, and you said arthritis is partially caused by IgGs" well yes, but your arthritis is caused by IgGs that have identified your cells (among other things), while the antibodies tested for in the test are the ones which have identified the wheat proteins. Just any ol IgG won't do- it's gotta be specific. Wheat may be doing something to aggravate your arthritis, but wheat IgG's aren't what that is.

To be clear, this isn't just my opinion. Every allergy-related organization in the world is in agreement- IgG testing does nothing to determine what you're actually allergic to. We have lots of tests that work for that. IgG testing just tests for what you've eaten or been exposed to recently. Which sounds exactly like what your cousin is experiencing.

R E F E R E N C E S

[zackaran]

I've had POTS since 2019 and it's the one I have the most managed(Stanford neurology my beloved). Midodrine helps me the most, along with a fuck load of salt and electrolytes. It's still not enough and occasionally ruins my life and keeps me from doing what I love since I basically still can't walk up a hill on a good day. But fuck at least I can attempt things, and garden and, do mostly level hikes or walks. Or at least I could before whatever likely autoimmune thing started fucking up my shit about 2 years ago. <- That's what's preventing me from doing fucking anything. No idea what permanent damage it's causing and no doctor seems to care at all or listen to me.

Extreme fatigue, weird inconsistent allergies/chronic hives/MCAS? Stuff, bizarre extreme sunlight sensitivity that gives me like a fevery awful immune response, light sensitivity in general now with my eyes, joints more inflamed/painful/hypermobile than they've ever been, dental decay, shaking/feeling like low blood sugar or not enough protein, extreme painful gas and bloating when I eat, more migraines than ever. And I have 2 years worth of detailed documentation of these symptoms destroying what little bit of a life I'd started to build for myself but no one cares or will do anything.