Could This be Autoinflammatory?
This is a repeat post. But I have more thorough information update. But still no answers.
Who You Are
31. Male. Swiss/Armenian/American. Non smoker. 88kg. 198cm. MSc Nutrition Science. Works in rheumatology NGO. Lifelong systemic illness since childhood. Hospitalised at age 1 with systemic bacterial infection.
What A Flare Looks Like
Flares are triggered by foods, such as peanut butter, walnuts, sauerkraut, yoghurt, UHT milk, and other proteins, with severity proportional to the amount consumed. Onset begins within a few hours of exposure, peaking over several days. Symptoms include chills, fatigue, feverish feeling, sore throat, burning ears, runny nose, red eyes, stomach irritation, nausea, irritability, and stiff internal neck with lymph node pain. There is no fever.
Most symptoms present at baseline to some capacity, with great QOL impact
Without rescue treatment, flares persist for weeks. The only reliable rescue is ⭐️azithromycin (2 x 250mg spaced over a few days). Azithromycin works every time without exception. Prednisone definitely provides relief (3 days to work). But relief is incomplete. Doxycycline does nothing.
Even after exposure stops, the flare continues, and it is unclear whether it ever fully resolves on its own anymore. Quercetin also provided notable relief (3 days to work). Felt like healing even compared to azith which just stops flares. But then tacphylaxis.
Symptom Clusters During Flare
Flu / Infection Feeling: Chills, hot flu-like sensation, sore throat, runny nose, red eyes, skin itching
Headache/Burning: Temporal headache and pressure, burning hands/abdomen (worsened by omega-3s, relieved by Advil and quercetin)
Lymph / Neck: Previous periods of very swollen neck and face lymph nodes (particularly 2013). Regular left cervical lymph node and groin lymph pain, stiff neck, with internal blocked sensation
GI: lower abdominal pain, gas, intermittent diarrhoea, nausea, occasional rectal bleeding, urethral burning, rectal ache, back of throat ache, rectal itching
Continued…
Fatigue — exercise improves, or neutral. Bad sleep severely effects
Erectile dysfunction — absent on waking, non-responsive to PDE5 inhibitors
Difficulty concentrating, cognitive slowing
Vibration/frog noise/sensation rising through the throat
*Bug-bite-like rashes — erythematous, raised, non-pruritic, lasting hours, concurrent with flares
Knee pain during flare
Notes (I have lab documents for these)
Antihistamines failed (ketotifen/cetirizine/monteluklast, famotidine, loratadine, fexofenadine) — rules out primary MCAS?
CRP 0.5 mg/l is normal between flares
Normal CBC, metabolic panel, TSH, HbA1c, testosterone, LH, cortisol/Synacthen
Colonoscopy and endoscopy with biopsies: normal (2019 and 2025). Normal calprotectin.
Probiotics provide some relief, but then heavy symptoms
OJ helps burning feeling, headaches and sleeplessness caused by alcohol and nitrite
Tried multiple elimination diets
Lymphopenia (.75g/l) but maybe irrelevant
Immunomodulator response, food response and flare-associated rash, lifelong history since infancy, are inconsistent with functional illness
Ideas
Incomplete/atypical Autoinflammatory (lack of fevers, which seems exclusionary)
Secondary MCAS
Ask for:
⭐️Rheumatology referral
Immunological panel: ANA, ANCA, complement C3/C4, SAA, SPEP.
Baseline serum tryptase
24-hour urine: histamine, N-methylhistamine, prostaglandin D2
Periodic fever panel (TNFRSF1A, NLRP3, MVK, CECR1, NOD2, all FMF/MEFV variants including E148Q, Yao)
Colchicine 0.6mg BID prescription
Anakinra