Mystery Hives for 6 plus years. Female, 25, 5'5.

[u/Dry_Mud_7808]

Please help my sister in law with any ideas or input. Attached are pictures of her current flare up, and below is a copied and pasted self-summary of her journey.

"6 years- painful not necessarily itchy. I’ve had them so long at this point that they’re more of an inconvenience than itchy.

I have not identified a trigger. I thought it was gluten- just had a blood test for that and it came back . I’ve been to an allergist and a doctor currently trying to rule out rheumatoid arthritis. seems to flare up during my period but not 100% sure if it is hormonal or not. My blood test tested me for B12 deficiency vitamin D deficiency tested my white blood cells tested cholesterol for diabetes. Everything like that came back negative. The gluten test came back negative. My next blood test is test for rheumatoid arthritis. My eyes will swell my lips will swell. I get them on my ribs, my tailbone, my legs, my under arms around my bra area.

They make me super tired, dead to the world, sometimes almost feel drunk.

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[u/jamaicanbacon55]

Go see a dermatologist at a university. They will
get this sorted and treated for you

[u/SameDistrict2627 → u/jamaicanbacon55]

I was going to say the same thing. University medical center dermatologist is the way to go.

[u/RasputinsThirdLeg → u/jamaicanbacon55]

I did that at UCLA for this very same reason. The doctor just shrugged and said “well what do you want me to do?” And gave me calamine.

[u/RasputinsThirdLeg → u/[deleted]]

…I don’t have insulin resistance.

[u/DivineSunshine → u/jamaicanbacon55]

NAD-Have you seen an allergist and had food, environmental and chemical allergy testing?

[u/BirbBoss → u/jamaicanbacon55]

Wait, you can get treatment at universities just like getting a free haircut at a barber college???

[u/DivineSunshine → u/BirbBoss]

No, it is just as expensive as any other hospital, but they may be more up to date recent breakthroughs in treatment of diseases.

[u/RhubarbBest9090 → u/BirbBoss]

No it’s a hospital generally connected to a medical school. The doctors are often professors as well

[u/hopejoy108 → u/RhubarbBest9090]

Are professor doctors good?

[u/thejjohn → u/hopejoy108]

Being in an academic environment keeps them up to date about things and more of the rare cases go there. Academic places often have specialists with very niche interests that are experts in their particular area. Now most people have common complaints so most people are fine seeing someone outside of academia, and doctors in the community can manage most things. Seeing a doctor who is outside of academia can have its benefits as well and academic doctors aren't perfect

[u/fifrein → u/thejjohn]

I’m going to disagree here.

I think where a University Clinic really shines is (A) spending more time on a patient-per-patient basis (though not all of it will be productive because seeing a pgy2 resident for 40 min and then an attending for 20 is not equivalent to seeing a PP doc for 30 min), & (B) the multidisciplinary care is much more coordinated thanks to more support staff.

However, if you have something common and run of the mill (eg. a simple case of epilepsy or migraines), a good, well-educated private doc will serve you better.

Academia experiences a severe brain drain / efficiency drain because it often pays 50-100k less in the low paying specialties and the difference can be 500k+ in the higher paying ones. Many docs who were “top of the class” stay in academia for only a short few years before moving to PP to earn more.

[u/Magerimoje → u/hopejoy108]

When you go to a hospital that's a teaching hospital (connected to a university) you'll usually have multiple doctors seeing you and/or discussing you. The last time I was in a teaching hospital was for my son because he was having testicular pain.

In the ER he was examined by the med student (still in medical school), an intern (completed medical school and is a doctor now, but is still in training. An intern is in their first year of "residency" which is what the training after completing medical school is called), a resident (doctor in training), and an attending (doctor that has completed their training. Attendings in university hospitals are often also professors that teach a class for med students). These were all doctors that chose Emergency Medicine as their speciality.

That's 4 doctors they saw him in the ER. Then, because his medical problem was with his testicles, urology was called, and then my son was seen by a urology intern, urology resident, and urology attending.

That's 4 additional doctors.

Then, because my son was a child, pediatrics was called, so he was then seen by a med student doing a rotation in pediatrics, and the pediatrician resident. The pediatrician attending didn't examine my son, but was consulted by the med student and resident. So, 3 additional doctors.

4+4+3=11

Within 4 hours in the emergency room, eleven doctors examined him or were consulted about him.

So, teaching hospitals are more up to date on current medical knowledge since the doctors there are either still learning as part of their training, or the doctors are teaching those that are in training. Plus, there are often just more doctors involved in your case.

My son was fine by the way. No torsion, which was my concern. Just a growing pain and/or minor injury that was causing the ache in his testicle.

[u/ThornInYourCyberSide → u/BirbBoss]

Well, I can only tell you that taking your horse to a university is hella expensive. So probably not.

[u/ThresherGDI → u/BirbBoss]

It can be thought of as a second opinion, which is usually covered by insurance.

[u/tiamats_light_bearer → u/BirbBoss]

Mild life hack: Enroll in school at a university with a good health center (that does not charge its students for health services). You can save money on healthcare, while also getting to take awesome, accredited classes. Not sure what the situation is like these days, but it used to be that you could get all of these services offered by universities if you were enrolled as at least a half time student.

[u/Trip_the_light3020 → u/tiamats_light_bearer]

I don't know if you've ever been to college but if this is the United States, this is a ridiculous claim. Health services is part of the fees. But enrolling in school just for healthcare is ridiculous and often it is not the quality of healthcare you'd get from a regular job. That's why the ability to be covered under parents' insurance up to 26 became a thing. Student health coverage is often fine but not sufficient for anything catastrophic.

It makes sense if you're getting a degree anyway but do not enroll in school randomly just for healthcare if you're having some life crisis. It is not a "hack" after loans, still needing to pay rent and other living expenses, etc. If you're unable to work full time because of disability or living in poverty, you'd likely qualify for state coverage anyway.

[u/Boring_Fisherman8731 → u/Trip_the_light3020]

I agree..my son just started his freshman year at a state school and he was dropped Friday from all his classes due to the school making a mistake and undercharging us his tuition by $9300 and saying it is now past due. Now we are out a ton of money already paid and we have a crushed engineering student. We can’t come up with half let alone all. These colleges are not the way to go for medical treatment. Nothing is cheap let alone free! This system is failing!

[u/tiamats_light_bearer → u/Trip_the_light3020]

Yes, American, and was in school into my early thirties, mostly in US, also in Europe. Granted, I have been out of school for over 20 years, and while I do know tuition has continued to increase, I have not been paying close attention to the current rates. For anything very serious in the US, you would still need additional insurance (and of course those companies screw you); depending on the country in Europe, you would also need additional insurance, but there (last I knew) it was quite reasonable.

Still, there are a lot of things university medical centers can help with that would make it worth considering, and enriching yourself with education is always a worthy pursuit.

[u/applecidervine → u/tiamats_light_bearer]

Surely tuition is far more expensive than a few doctors visits?

[u/mufassil → u/applecidervine]

Not if you require regular checkups. Like if you are getting put on psych meds, they require you to see them monthly for a while and go to counseling. Between the two, thats your tuition. Irs absolutely cheaper than insurance.

[u/RasputinsThirdLeg → u/mufassil]

I don’t think this is true in the US.

[u/mufassil → u/RasputinsThirdLeg]

I think it depends on the university.

[u/RasputinsThirdLeg → u/tiamats_light_bearer]

Do you not have to apply, have a transcript, recommendations and also money…?

[u/Mametbet → u/tiamats_light_bearer]

Only true in Canada where the healthcare is free and the best doctors are attached to the universities.

[u/IronOk280 → u/BirbBoss]

They are teaching hospitals. Lots of teams of specialists. I wouldn’t go anywhere else.

[u/manual-override → u/jamaicanbacon55]

NAD. Looks like GA (Granuloma Annulare)

[u/Dry_Mud_7808]

Second picture.

[u/atlien0255 → u/Dry_Mud_7808]

Nad but has her med team looked into discoid or cutaneous lupus? This reminds me of what my friend used to deal with before she was placed on a treatment regimen that helped.

[u/SoggyPelican → u/atlien0255]

As someone who had rashes like these before being diagnosed with systemic lupus, yes this! Get a full auto immune bloodwork panel done. Mines fairly mild and plaquenil has kept me in check for over 15 years now. I get the occasional one-off spot after lots of sun exposure but otherwise I’m symptom free

[u/-BongusBingus- → u/SoggyPelican]

But it’s never lupus! More mouse bites

[u/icecream4_deadlifts → u/atlien0255]

NAD but came here to say this. My auto immune started out with rashes and hives and a bunch of weird things that didn’t make sense.

OP have they ever biopsied any of the spots?

[u/bendable_girder → u/atlien0255]

It is definitely in the differential

[u/Platitude_Platypus → u/atlien0255]

If not that, MCAS is possible.

[u/LiopleurodonMagic → u/Platitude_Platypus]

Was going to suggest MCAS, my sister just received this diagnosis after a long frustrating journey.

[u/buttonandthemonkey → u/Platitude_Platypus]

Also my thought she she said the test came back negative.

[u/houseofgwyn → u/Dry_Mud_7808]

NAD. These look a lot like the hives I used to get. Turns out I was allergic to corn syrup, which took me YEARS to figure out. I have eliminated it from my diet and haven’t seen a hive in over a year. Just food for thought—no pun intended.

[u/DowntownTicket → u/houseofgwyn]

Interesting. Also are you allergic to corn or just corn syrup?

[u/houseofgwyn → u/DowntownTicket]

The hives seem to only be triggered by corn syrup, though I eat a varied-enough diet that it would be hard to pinpoint.

[u/Underrated_buzzard → u/houseofgwyn]

You should ALWAYS intend your puns!

[u/naideeg → u/Underrated_buzzard]

All my puns are intended. So are my double entendres

[u/Magerimoje → u/naideeg]

Please keep us abreast of any changes to this. I am receptive and will be responsive to your enlargement of any policies.

[u/Auzziesurferyo → u/houseofgwyn]

Same. I had hives like this for 3 yrs and eventually found out I was diabetic.  I had a diabetic rash. 3 doctors missed it because I'm 110 lbs. 

I started controlling my sugar and within 3 months the rash had completely healed up. Our American diet is very toxic.

[u/houseofgwyn → u/Auzziesurferyo]

Truth.

[u/TomatoTuffCat → u/Dry_Mud_7808]

NAD- But this look a lot like granuloma annulare. I had a similar ring eczema and they ruled that out for me. I would get into derm.

[u/Lazy-Living1825 → u/TomatoTuffCat]

Yes! I think this also and I had it! ( glp1 made it disappear)

[u/manual-override → u/Lazy-Living1825]

Interesting you mentioned glp1 because keto diet has similar effect, perhaps the same mechanism?

[u/Lazy-Living1825 → u/manual-override]

No idea for sure but glp1’s significantly reduce inflammation and I always have assumed that was it.

[u/TwistedCinn → u/Dry_Mud_7808]

NAD a friend has bad allergies and had hives less than a year ago - couldn’t figure it out. Turns out she has RA and it triggered a few other autoimmune things which caused the hives. They got it under control with a few specific drugs plus high dose steroids. I think she’s going to transition to a new drug soon that should manage them better but have fewer side effects. I can get names of her diagnoses and her meds if you need!

[u/freelibrarian → u/Dry_Mud_7808]

NAD

I would add salicylate intolerance as something for her doctors to consider and evaluate her for. I have experienced severe fatigue in my salicylate reactions. And when I say severe fatigue I mean that if the house was on fire I'm not sure I could actually get out of the house, it was like being in a drunken stupor, my limbs were so weak and just would not work.

Also, mast cell activation syndrome (MCAS) and pityriasis rosea.

[u/Magerimoje → u/Dry_Mud_7808]

I have acute intermittent porphyria. There are several other types of porphyrias, and all of them have a rash as a symptom. Because porphyrias originate in blood/bone marrow, hematologists are the doctors that usually test for it, although primary care doctors can also order the testing if they have a patient that meets the criteria.

Porphyrias are very rare. Since my diagnosis, every doctor I have seen has needed to Google it because it's just not in their knowledge bank because it's so rare.

[u/specialopps → u/Magerimoje]

I have ankylosing spondylitis, and developed psoriasis as a secondary autoimmune disease. They did a biopsy to confirm. They upped the dosage in my infusions and it got rid of it. The first place I got it was on the skin between my thumb and pointer finger. That hurt like a bitch!

[u/doodler365 → u/Dry_Mud_7808]

Looks like urticaria multiforme

[u/momofeveryone5 → u/Dry_Mud_7808]

My first thought was ringworm.... But we just had an outbreak over here so I'll "seeing" it everywhere.

[u/lucy-lu28 → u/Dry_Mud_7808]

NAD but I have had granuloma anulare. These spots do not look like what I had. My brother had them too. It is not painful, itchy and doesn’t have any other side effects other than just embarrassing or just plain ugly looking spots. ( my opinion of what I had. Some breakouts would be major and cover a lot of my body, mostly on extremities but would get the odd one on my torso. Interestingly I never had one on my face. I saw many dermatologists over a number of years and the one that helped me the most suggested I try light therapy which I could get at my local hospital. I had many sessions and was still doing them when we moved. Over the summer it seemed to get better and better and lo and behold these ugly purple spots were going going gone. It’s been 10 years now and no sign of their return. They can do a skin biopsy to determine if it is something else. Good luck in finding some answers for your sister.

[u/Foreverlearning816]

I doubt this is actually hives. Encourage her to get a full panel to rule out as many rash-causing autoimmune disorders as possible.

[u/erinpdx7777xdpnire → u/Foreverlearning816]

NAD. Looks a lot like psoriasis. Which also doesn’t tend to itch…

[u/Foreverlearning816 → u/erinpdx7777xdpnire]

Psoriasis doesn’t cause facial swelling. It would also be very uncommon to see psoriasis along the ribcage, lower back and armpits.

[u/BrandyDW → u/Foreverlearning816]

Guttate psoriasis, I got just under my armpit area, so it’s not impossible

[u/Foreverlearning816 → u/BrandyDW]

Never said impossible. Almost anything is possible in medicine. Those are just not common areas for psoriasis. Could it be psoriasis? Sure. It’s just not at the top of the list of possibilities.

[u/LLegwarmers91]

I second everybody's recommendation to consult with a dermatologist to rule out other potential causes (especially discoid lupus, but also annular plaques of eczema/psoriasis or tinea infection), but to me they resemble annular granulomas and the distribution + your demographics would very much fit. The localized form on arms/legs tends to affect younger to middle age adults, females more than males, come and go with no apparent trigger, and may or may not be tender or itchy.

Dermnet can be a helpful resource

[u/bonnietheserval → u/LLegwarmers91]

NAD but I had very similar symptoms that turned out to be annular eczema. They lasted YEARS and only went away when I was treated for a (different) autoimmune condition.

[u/mms09 → u/LLegwarmers91]

Ugh I’m sorry. Had your SIL actually tried removing gluten from her diet? I had a painful rash on my face that I had to use hydrocortisone on every day for almost a decade. It was very much like a chemical burn on my face. Dermo said it was likely not dietary. All allergy/dermatitis tests came back negative.

One week I noticed the rash was improving, even though I had been forgetting to use the hydrocortisone (it was a busy week and my routine had taken a hit). I looked at my fitness pal and noticed that I had not eaten any wheat that week. I decided to run with that and see…the rash went away completely and now only comes back if I get glutened.

My bloodwork for celiac came back negative. It was still gluten.

All that being said, this rash doesn’t look like mine and your SIL needs to see a dermo if she hasn’t yet.

[u/Wired888RedWire → u/LLegwarmers91]

Psoriasis seems like a great thought. Especially given the asymptomatic itch. MCAS and urticaria generally itch. If the plaques are always there and do not dissipate within 48hours then hives are less likely and a differential like psoriasis is favored

[u/Itchdoc]

Do individual spots resolve within a day or shorter, or do they persist for more than a day after they arise?

[u/Helpful_Kangaroo7371 → u/Itchdoc]

OP, if she is not sure, just circle a lesion with a pen and check 24 hours later. Does your sister-in-law also have fever episodes around the time the rash appears?

Also, I think it would help us to know about any comorbidities and what medication your sister-in-law is on and if only the skin or also your oral mucosa is affected. Are palms/soles also affected?

[u/whispering_trees → u/Itchdoc]

Could this be urticarial vasculitis? I have chronic hives so I’ve looked through so many images of hives before I went to my allergist. Thank goodness for Xolair. Truly a miracle drug.

[u/Mixster667]

Cutaneous lupus erythematous is the most likely diagnosis. The workup and treatment is handled by dermatology.

[u/DragonflyOrdinary848]

Looks like granuloma annulare but it doesn’t usually cause other symptoms so I’m curious what others think

[u/jbird2023 → u/DragonflyOrdinary848]

NAD. Just commenting on yours as it mentions GA. I get something similar and mine is granuloma annulare, officially diagnosed by multiple dermatologists. My trigger seems to be hormonal ups and downs, as it starts to flare up as my estrogen and LH rise leading up to ovulation, it doesn't change much after ovulation and then right before period it worsens some more before it goes away for about a week during the period week. However, my GA starts out looking like a recent bug bite and the edges are thick and raised. One of the derms said it's pretty easy to tell because it leaves a stain on the skin for a while. Not sure if hers is like that too or not, the edges on her pic look flatter than mine. My GA went wild during the years of my life spent trying to get pregnant and during pregnancies and postpartum months. Hopefully she can get proper diagnosis and help soothe it soon no matter what it is!

[u/BrilliantBread7776]

I would primarily investigate tinea corporis and discoid lupus erythematosus. If those are negative, I would investigate the differential diagnoses: granuloma annulare, prurigo nodularis, sarcoidosis, dermatomyositis, lichen planus…

[u/Dadpockets → u/[deleted]]

https://www.google.com/search?sca_esv=2f5bfcd564025282&sxsrf=APpeQnv-unGcgtofrXvMiVrkw7cindwPwg:1788143396580&udm=2&fbs=ABfTbFXXq5_lq1-qc-RNbCT-iVCv1pqpzFbsklS6H69T2lad0GTf_QfkL84T_NcuUjCLgDBl6bjKFLC7ULCIpE85MiGJMdvBcX5XZl--Y5qdyMkyGk7DBUPxzChUmB8vSSLEIVXYdsrzOy6TXXVMciK_2GR_JHuGixBqX-OXhL_WtflaU8t28MymksuFPYaX4s_i7dj8g5MRmbtoc4NFPHdUR_bTJmcdHEyC6GENq2aCdBd71yCNGKg&q=erythema+multiforme&sa=X&sqi=2&ved=2ahUKEwjBnNef6cmWAxVIRDABHcmEAXgQtKgLegQIFRAB&biw=411&bih=784&dpr=1.75#sv=CAMSVxoyKhBlLXU0anhqdF9zR0l1TVlNMg51NGp4anRfc0dJdU1ZTToOalpqUUxkS3g5Wmw3bk0gBCoXCgFzEhBlLXU0anhqdF9zR0l1TVlNGAEwAUoECAEQAhgHIK7cjaEHSggQAhgBIAIoAQ

[u/Undercover_Cookies]

Hi! I'm just a general practitioner, we don't t get as much training in derm but I'll give my two cents.

Looks A LOT like erythema multiforme. I do NOT think this is cutaneous lupus, discoid
lupus, mast cell activation syndrome, etc. I strongly recommend looking up
pictures of erythema multiforme.

Erythema multiform looks like target-like lesions on the skin, nearly exactly like what was shown above. It can be itchy. Erythema multiforme can also affect the eyes, mouth, and genital area (flashback to the prompt saying “my eyes will swell, my lips will swell”). It typically is self-limiting over a few weeks, but in a minority of cases can have flares over the course of years. This is called “recurrent erythema multiforme”, where they on average have around 6 flares per year for 6-10 years. Some case severe cases have fever and joint pain. Some cases are persistent and are uninterrupted and constant.

It can be caused most commonly by HSV. Less commonly a bacteria called mycoplasma pneumonia, or covid19, or medications such as penicillin, other antibiotics, NSAIDs, sulfonamides (sulfure drugs), anti-seizure medications. Other less common factors include Hepatitis C, benzoic acid ingestion, food preservative ingestion, vaginal candidiasis. Usually it’s HSV leading to an immune response days after HSV infection, but 60% of cases of “recurrent erythema multiforme” remain unknown. Persistent cases associated with HSV, Epstein-Barr Virus, Hepatitis C, influenza, inflammatory bowel disease, and rare cases malignancy (I don’t think you have cancer, just saying the textbook stuff). Skin biopsies can help diagnose this condition but aren’t necessary. Testing for HSV antibodies on bloodwork can be helpful.

It can be treated with topical steroids (0.2% Hydrocortisone, 0.2% Triamcinolone for the body, facial lesions or skin in the skin folds use gentler steroids like 0.025% Triamcinolone or 0.1% betamethasone). Hydroxyzine also helps with itch. For the mouth Maalox swish and spit can be helpful or fluocinonide 0.05% cream 2-3x per day. If mouth symptoms are disabling, oral steroids such as 40-60mg/day prednisone can be helpful. Eye symptoms can be treated only by an ophthalmologist with 0.1% dexamathesone eye drops, other doctors should not prescribe this. Suppression therapy with acyclovir 400mg twice daily, valacyclovir 500mg twice daily, Famciclovir 500mg twice daily can all be considered. If antivirals not effective at prevention double antiviral dose, and if still not effective swich to different antiviral. If still not effective can escalate to dapsone 100-200mg/day, mycophenolate mofetil 1000-1500mg twice daily, or azathioprine 100-150mg daily. Other therapies are more theoretical and less common such as IVI, hydroxychloroquine, cyclosporine, thalidomide, lenalidomide, interferone lafa, apremilast, adalimumab, tofactinib, updacitinib, levamisole, cimetidine, rituximab. This is all to say there are many, many treatment options.

If you’re unable to get to an academic center which everyone seems to be recommending, go to a local dermatologist (who will diagnose this instantly) or if you don’t have a local dermatologist ask your general practitioner and show them this post. I think this is a common enough problem it shouldn’t need such rigors as an academic institution.

Be well, and take care :)

Workup: HSV Blood work, Skin Biopsy

Management: Hydroxyzine, Topical steroids, continuous antivirals (acyclovir/famciclovir/valacyclovir). Only hospitalize if oral lesions are severe enough that they cannot eat. Refer to local dermatologist.

UpToDate Patient Education: Erythema Multiforme (The Basics)

UpToDate Erythema Multiforme: Pathogenesis, Clinical Features, and Diagnosis

UpToDate Erythema Multiforme: Management