Any recs?

I've been diagnosed with Granuloma Annulare, plus an undiagnosed systemic element that caused blurry left eye, headaches, severe dizziness, chest pain which stems from enarged nodes and thickening of the lung walls.

I've now made some interesting connection between starting Ozempic and my very first hectic flare, and I was wondering if anyone else had noticed an increase in their symptoms when they started a GLP1?

It's been a LONG few months trying to figure out what's going on with me, as I also started HRT at the same time as going onto Ozempic.

First I went off everything while we tried to get the inflammation under control with cortisone and methotrexate, then I started back on Ozempic after a couple of months. (Note I was using Ozempic for NES - night eating syndrome, not because of diabetes.) I also restarted HRT but only about 2 months ago.

2 weeks back I stopped the Ozempic as I was having too many side effects, intense fatigue, low motivation etc.

Today I noticed that my symptoms from Granuloma Annulare seems to be fading...and then I did some research that confirmed it - in some cases, Ozempic can aggrevate the nervous system!

I'd love to know if anyone else has either experienced this?

I had private genetic test done to see if I had any known gene for EDS, turns out I do, and I’ve been diagnosed with EDS, POTS and MCAS. However this test also showed a mutation in my NOD2 gene associated with Blau Syndrome or IBD, which wasn’t really on my radar before.

However, I have felt there is a missing piece to my health issues for awhile, and I am wondering if this could be it. I have flare ups that mimic a lot of crohns symtpms but do not have crohns. These episodes do not really fit my other diagnoses either.

During these flared my skin starts to become painful, I get fever, intense intestinal pain, diarrhea, vomiting, joint pain and swelling, and oral rashes. Following the flare subsiding I have higher levels of hair shedding and my intestines seem to absorb things less. These episodes are becoming more and more common. Closer together, and nearly monthly.

I’m not really sure where to go from here though. I’ve been told by my other specialists that rheumatology won’t see me unless I have through the roof inflammation marker numbers. I did not see a geneticist for my genetic testing so have no deeper knowledge there. Is it a smoother path to go deeper with a geneticist or try to get into rheumatology? My intestinal pain is very bad currently and I have an appt with a new gastro but is this even worth mentioning to them in a hey should we look deeper into this way?

If anyone has a similar story would love to hear how you tackled getting care.

I’m a 40-something male

I’ve been on several prednisone doses and tapers over the last few years for mild SSNHL(sudden hearing loss)
The first prednisone taper was rather high, 80mg tapering over 7 weeks.

Most recently, I was on a 60mg x 10 days, then 55,50,45, etc per day for a 3 week taper.

I seemly have tendon/muscle issues, lots of pain massively relieved by prednisone.

The first taper, it finally loosened up spine tension I had had for years. This last time, it felt like most of my body pain completely disappeared, until I was midway/towards the end of the taper portion.

Some example are Plantar Fasciitis, calf muscle pain, spinal pain and tension, neck pain, inflamed joints.

I was diagnosed as having Central Sensitization (pretty much Fibromyalgia,) which I think is potential partially valid.

However, I’m curious how this is for diagnostics of potential Autoinflammatory disease.

I have a history of heart attack, so I can no longer take NSADs, which historically helped a lot of the pain I’ve had in the past.

Hi everyone!

Last year I was hospitalized for almost a month due to liver inflammation. I’m experiencing a bit of inflammation of my liver again, though not as severe. My levels have been relatively stable but high, with ALT and AST stabilizing in the 200s.

I have YAOS + FCAS, as well as MAS. I am on prednisone for almost a year already with dosages ranging from high to low during periods of tapering. I have been on Ilaris since December 2025. Do you guys have any ideas what the hell is going on? Not looking for specific medical advice, simply if I’m the only one? I also don’t drink. Felt like that’s important to add there 😅

Has anyone here seen Dr. John Davis at Mayo Clinic? I was recently diagnosed with Mixed Periodic Fever Syndrome by my local academic hospital. I have a NOD2 mutation. I just spent a week in the hospital with sterile serositis/perotinitis and they discharged me with a referral to Mayo Clinic. I generally have heard very bad things about Mayo so I’m nervous to follow up there. If you’ve been seen at Mayo I would really appreciate any input about your experience!!

Undiagnosed illness for 6+ months. What should I do next?

I’m 21F and have been dealing with recurring low-grade fevers, extreme fatigue, body aches, lower back pain, weakness, and episodes of a racing heart since April. My symptoms seem to worsen around my luteal phase, but lately I’ve been feeling unwell almost constantly.

I’ve seen infectious disease, rheumatology, genetics, cardiology, and multiple ER doctors. I’ve had extensive bloodwork, CT scans, and other testing, but still no answers.

I’m getting progressively worse, and it’s affecting my everyday life. I’m looking into undiagnosed disease programs and research hospitals, and I’m willing to travel anywhere in the US.

Has anyone been through something similar? What specialists, hospitals, or diagnostic programs would you recommend? I feel completely lost.

I’ve been on it for 6 days and tonight on the 6th dose it got insanely itchy and all red and splotchy. Did anyone else’s start after a week of injections? I thought I was avoiding getting reactions.

​

Demographics:

Age: 27

Sex: Female

Height: 170 cm (5'7")

Weight: 65 kg (143 lbs)

Build: I lift weights and am fairly muscular, but I have a really hard time with cardio (walking up stairs or cycling makes me completely out of breath and dizzy).

Race: Caucasian

Primary Complaint: Lifelong history of frequent infections (4 week(s) long hospitalizations), spontaneous anaphylaxis-like shocks, severe cold-triggered autoinflammatory crashes, rapid recurrence of knee synovial chondromatosis, and disabling chronic fatigue.

Duration: Continuous since childhood, severe deterioration over the last few months.

Current Medications: Xolair (omalizumab), historical courses of rescue prednisolone, a history of multiple allergy medications and inhalers.

Country: Netherlands

Full Post

Hi everyone,

I am writing this because I am completely lost in the medical system. I have been dealing with illness my entire life, but recently, my regional clinical immunologist discharged me back to my GP. Because I have fewer than 3–4 severe bacterial lung infections a year (though I had pneumonia this past February and ear infection's requiring antibiotics), he told me my case doesn’t fit his department's strict respiratory checkboxes. He explicitly stated he believes my pain and symptoms are 100% real and physical, but it’s "not his expertise," so he can't help me. The amount of medications, hospital visits, doctors appointments and ailments are making it unbearable for me long term since it's been years. Everytime things seems to get better an other problem seems to appear.

Despite being fairly muscular and lifting weights regularly, I am currently experiencing extreme, debilitating fatigue. I am completely exhausted all the time and am physically unable to work more than 2 half-days a week or meet with friends more than once or twice a week . Basic cardio is impossible; climbing a single flight of stairs or trying to cycle leaves me completely out of breath, pain in my chest and almost passing out. I feel completely abandoned. I am desperate for any advice, potential diagnoses to bring to a university expertise center, or ideas on what kind of specialist I actually need. Here is the full, lifelong picture:

1. Infection History & 4 Past Hospitalizations:

I was always sick as a child. Last 4 years, I have been hospitalized 4 separate times for multi-day stays due to severe infections: 2 times for severe gastrointestinal infections (including a severe Campylobacter infection), and 2 times for severe Urinary Tract Infections (UTIs) that traveled up and became full kidney infections. I frequently catch every virus going around, including repeated bouts of the flu and COVID-19.

1. Spontaneous Anaphylaxis-like Shocks & Xolair:

I suffer from sudden, severe, idiopathic (unknown origin) allergic-like shocks that look like anaphylaxis. They originally came completely out of nowhere and required aggressive treatment with prednisolone courses to control. Because of these dangerous, spontaneous attacks, I was put on Xolair (omalizumab). I also have a history of requiring numerous anti-allergy medications and inhalers. While the Xolair helps keep these spontaneous shocks at bay, it does absolutely nothing to prevent my separate, severe temperature-dependent flares.

Allergie test show multiple allergies, but avoiding it all doesn't seem to help.

When doing a lactose test the baseline (after 12 hours of fasting, blowing in a machine) it was way to high already

1. Extreme Cold-Triggered Systemic Crashes:

If it is cold at the office or if I get exposed to sudden cold, I get severely unwell within 1 to 2 hours.

I experience intense nausea, profound fatigue, dizziness, severe pain in my joints and neck, excessive sweating (strong Ammoniac odor), and violent chills. The only thing that stops this cold flare is taking a long, hot shower to physically warm my core back up. it takes a few hours for the sickness to fade.

1. The Knee & Lifelong Joint Issues (Since Age 12):

I have suffered from severe joint stiffness, pain, cramps, and physical hypermobility since I was 12 years old.

5 months ago, I had laparoscopic surgery on my knee to remove around 50 loose bodies. It was diagnosed as synovial chondromatosis. However, the surgeon only removed the loose bodies and did not remove any of the synovial tissue lining (no synovectomy). 5 months later, the severe locking, popping, pain, and catching have fully returned, and my physical therapy isn't improving. Even worse, I am now developing severe pain in my other joints (my wrist , hips/si and shoulders). I have a very high pain tolerance normally, but this is a completely different kind of debilitating pain.

1. Vascular, Nerve, and Cardiac Symptoms:

Heart Palpitations: I have suffered from chronic heart palpitations since I was 5 years old.

Raynaud’s Phenomenon: My hands get violently cold, experience severe cramping, weakness, and the skin on my hands wrinkles up extremely quickly.

My hands are always freezing and I'm shivering from cold often when it's a normal temperature (18 Celcius, 65 Fahrenheit) . Sometimes my hands have orange and white spots when it's cold.

Nerve issues: I wake up constantly throughout the night with my arms or legs completely "falling asleep" (numb/tingling) paired with joint pain and dry eyes.

\\- a lot of camps in limbs and hands, joint pain and clicking sounds, stiffness and hypermobility, and bruising easily. Also a lot of hair falling out. Been to chiropractor regular since I was about 14.

Blown Alarm System: My low heart rate, low blood pressure, and extreme breathlessness during minimal cardio.

1. Recent Blood Work Clues:

Low IgG3 Subclass: 0.14 g/L (Low)

Low CD8+ Central Memory T-cells: 46 cells/uL (Low)

Elevated Blood Iron & Transferrin Saturation: Iron is 33.6 µmol/L, saturation is 58%. (Ferritin is normal at 38).

Negative Markers: ANA is Negative, and Bezinking (ESR) is normal at 2 mm/u.

Note: Advanced T-cell stimulus tests and Complement pathways (AP, CP, MBL) were drawn but are still currently pending ("In behandeling") in the lab.

1. Other Physical & Historical Clues:

Stomach/Bowels: Severe burning diarrhea up to 3 times a day, alternating with intense constipation every 2 to 3 days. I have a history of a hiatus hernia (middenrifbreuk) from a few years ago because of a gut infection (campilobacter/Helicobacter) that caused chronic vomiting for a few months. Have been on a FODMAP diet.

Had anemia and B12 deficiency (treated). Also vitamin k and folic acid supplemented by doctor previously.

Skin/Nails: Chronic eczema and skin issues. I currently have a fingernail detaching from the nail bed due to an active, persistent inflammation underneath that produces pus (refractory to anti-fungals).

Anorexia History: I had severe anorexia as a teenager, which is fully under control now, but it may have impacted my early baseline, metabolic history, or immune development?

Had a "second" puberty at 24 /25 when I was pregnant (miscarriage) , that's when my breast finally started growing and hair under armpits and "bikini line". Period is around 34 days+ but irregular (sometimes it skips a few months or weeks)

Missed Prolactinoma Clue: A few years ago, a routine blood test showed my prolactin was 1600 (very high). A brain MRI was recommended for a suspected prolactinoma but never performed. I still suffer from the dizziness and blurry vision associated with it.

My Question:

Because my immunologist says this isn't his expertise due to the lack of daily respiratory infections, what field of medicine does a lifelong case like this actually belong to? Any idea what this could be or how I could manage it?

Could an overlapping Mast Cell Activation Disorder, an autoinflammatory syndrome (like CAPS/FCAS), or a systemic connective tissue disease tie all of these pieces together? What further actions can I take or insist on on my next appointments?

Thank you so much for reading. Any tips or advice is welcome.

P.s.

Extensive Family History:

• Maternal Side: My mother is severely allergic to "almost everything" and getting treatment for dust allergies but is always . Anorexia and drinking problems are in this side of the family. Also a lot of excema and artrosis. My aunt is being treated for fybromyalgie and nerve pain.

• Paternal Side: My father, aunt, and grandmother all suffer from severe eczema. There is a strong family history of severe rheumatological issues (Reuma), osteoarthritis (Artrose), and osteoporosis (Botontkalking).

• Cardiovascular History: There is a heavy history of heart problems, sudden cardiac arrests, and strokes (beroertes) on the Beusekom side of my family.

• Immediate Family: My brother is also currently being treated by an internist for chronic medical issues and gaining weight rapidly despite being active and on a diet.

Welp, it’s official- NOD2-associated autoinflammatory disease (Yao syndrome). I’m starting sulfasalizine today. Fingers crossed.

Has anyone had experience with this? If so, did it eventually level out? I've gained 12 lbs since beginning which is not very helpful due to having existing high intracranial pressure. I am planning to up my dose as well so a little nervous. It's not listed as a side effect on drug but I did see on Facebook group this coming up :(

Hello! I was wondering if there was any literature regarding melanin-destructive autoimmune comorbidities and autoinflammatory disease, especially to do with potential reclassification and disease management. For instance, a progressed case of vitiligo, alopecia areata as well as intermittent uveitis lead doctors to believe I had Vogt-Koyanagi-Harada disease stacked ontop of a "Lupus-like" condition for years. Now that my specialists understand my condition to be primarily related to the innate immune system, I wonder what becomes of the previously diagnosed autoimmune diseases.

In terms of treatment, I know that many of these can be treated the same and so long as I show response. As my rheumatologist and immunologist say, "it's about treating symptoms."

But from a scientific standpoint, I am wondering if there is any specific literature on these melanin-related comorbidities and autoinflammatory. The kind of research between Lupus and vitiligo, alopecia, albinism, (or MS and these diseases etc.) is nonexistent for autoinflammatory. Do any of you have these things? Anyone else here have VKH?

Melanin-destructive autoimmune disease also effects the brain, nervous system, and heart. Vitiligo and alopecia areata are often shuffled onto dermatologists as purely cosmetic autoimmune diseases, but just as it's often the canary in the coal mine for something like Lupus, I wonder if it could be the same for autoinflammatory and if researchers have noticed this.

It looks like the American College of Rheumatology Convergence 2026 meeting (Nov 6 - 11) will have more than a few abstracts and sessions pertaining to Autoinflammatory Diseases!

• Definition of overlapping and mixed autoinflammatory disorders in patients carrying multiple autoinflammatory variants in a cohort of 483 patients followed at a tertiary referral centre
• Loss-of-function in NLRC3 causes a human autoinflammatory disease
• Uridine Deficiency in Bone Marrow Drives Neutrophil Senescence and NETosis via MAPK Signaling in Autoinflammatory and Autoimmune Disease
• Cardiac Manifestations in Vacuoles, E1 Enzyme, X-Linked, Autoinflammatory, Somatic (VEXAS) Syndrome
• Mixed NOD-like Receptor-Associated Autoinflammatory Disease
• Early-onset Idiopathic Systemic Polyarteritis Nodosa: A Distinct Autoinflammatory-like Phenotype with Refractory Disease Course
• Multi-Omics Characterization of Yao Syndrome Identifies Three Pathophysiological Axes and Disease-Specific Divergence from Blau Syndrome
• NOD2 Variants in a Pediatric Population: Genotype-Phenotype Patterns and a Comparison to Adult Yao Syndrome
• A Comparative Study of Clinical Manifestations of Yao Syndrome and Systemic Lupus Erythematosus
• Targeting Neutrophil Extracellular Traps with DNase1 as a Disease-Modifying Strategy for the Treatment of Inflammasomopathies
• NLRP3 inhibition as a potential therapeutic approach for inflammatory knee osteoarthritis: results from a Phase II study
• Rilonacept Reduces Pericarditis Recurrence Risk, Hospitalizations, and ED Visits: Outcomes From the RESONANCE Patient Registry
• Same Diagnosis, Different Risk: A National Analysis of Sex Based Outcomes in SLE Associated Pericarditis
• Characterization of Damage in Relapsing Polychondritis
• Factors associated with initiation of conventional and biological/targeted synthetic DMARDs in SAPHO síndrome. Results from SAPHO-SPAIN registry
• Factors Associated with Duration of Time to Diagnosis in Adults with Chronic Nonbacterial Osteomyelitis Enrolled in The SAPHO-CNO Study
• Ultrasound-assessed enthesitis and disease severity in SAPHO syndrome.
• Loss of T cell-Intrinsic NOD2 Immune Restraint Drives IL-17-Mediated Inflammation in Blau Syndrome
• Clinical Consequences of Mandatory Discontinuation of Compressed Colchicine and Transition to Coated Formulations in Familial Mediterranean Fever
• Colchicine Resistance and Comorbidities in Biologic Selection for Familial Mediterranean Fever
• Five-Year Follow-Up of Anakinra Treatment in Familial Mediterranean Fever: A Retrospective Single-Center Study
• Mortality in Familial Mediterranean Fever: Comparison with the General Population and Identification of Independent Predictors of Survival
• Efficacy and safety of goflikicept, an IL-1β and IL-1α inhibitor, in familial Mediterranean fever: an international randomized clinical trial
• MEFV Zygosity Predicts Colchicine Drug Survival with a Resistance Profile Distinct from Mediterranean Cohorts: the Largest Chinese FMF Longitudinal Study
• Subclinical inflammation in patients with Familial Mediterranean Fever with well-controlled disease
• Phenotypic, Therapeutic, and Genetic Heterogeneity of the Patients Misclassified as MEFV-Negative Familial Mediterranean Fever: A Multistep Analysis
• Pregnancy Outcomes in Women with Familial Mediterranean Fever Treated with Anakinra: A Retrospective Study
• And so so many more!!! The above was a quick pass when looking through abstracts and sessions

A great comment from u/on4aa that I would like to include : "These are mainly session abstracts and conference posters. If a subject is of particular interest to you, keep an eye out for the authors on PubMed. They will most probably publish a more detailed article within the year. Some of the authors may also be the best in their particular disease field and may be worthwhile to consult if you are affected."

To be honest I don’t think I’ve had a body temp about 99.0 since childhood. I run lowish-97.0. I also find it hard to find a good accurate thermometer but this is still universally true for me (I’m a mom and a NP, I know how to best check a temperature)

Case involves 14-year-old male, clean bill of health. Not diagnosed with any other health issues. Very active in sports. Dealing with a significant flare on head in the area of the initial site from 2023. The area we're currently dealing with was badly damaged from the initial case which took about 6 months to diagnose.

He has had it develop two other areas (skin and knee/thigh) very minor times. Steroids cream quickly resolved. We believe trauma/ fungal infections seem to be what triggers the immune response.

I am wondering if anyone has any thoughts as to why this could be happening now. He can have other significant wounds from wrestling but have no PG response.

Our family history did show other "autoimmune" responses in our household. Mother has hashimoto's (ongoing) and a case of severe vertigo, sister had a rheumatoid arthritis like spell from a likely viral infection (has not had any episodes like that since). All which occurred in 2023 at the same time the first PG episode occurred.

Are there any tests or Labs recommended? Any environmental things we should look at?

Located in the North Georgia area. Currently testing for radon. Drinking water from what appears to be a very clean, well close to spring head.

Any thoughts or ideas are welcomed!

What do you do to help the stinging?

A study on Undifferentiated Systemic Autoinflammatory Disease. Researchers grouped study participants into four categories. Would love to read the entire study. Big picture - researchers are digging into USAID!

Hi everyone,

I still don't have an official diagnosis because my doctors don't know what is causing my symptoms.

My main symptom is an elevated body temperature, usually ranging from 37.2°C (99°F) to 38.0°C (100.4°F). The unusual thing is that it seems to follow my circadian rhythm. It starts after I wake up and gradually goes down before I go to sleep.

So far, all of my tests have been normal. I don't have signs of an active infection or inflammation, and tests for bacterial and viral infections have been negative. My hormone tests are also normal, and my ANA panel was negative. My ferritin is around 30, so I was told I should supplement with iron.

Besides the elevated temperature, I have severe fatigue and widespread body aches. No medication seems to bring my temperature back down to normal. Ibuprofen sometimes helps with the body aches, but not always.

My primary care doctor doesn't want to refer me to a rheumatologist because, considering my normal test results, there doesn't seem to be a clear reason for it.

What I wanted to ask is: are there any additional tests that you would suggest discussing with a doctor that could potentially help find the cause? Has anyone experienced something similar, especially a temperature that rises during the day and goes back to normal before sleep?

If you've had a similar experience, how did you eventually find the cause, and was there anything that helped you?

Any advice or personal experiences would be greatly appreciated. Thank you!

Do you work? If so, would you mind sharing what industry you’re in?

I’m trying to get back into the workforce and struggling to figure out what type of work would be a good fit for me, especially since I’m on an immunosuppressant and need to be mindful of the work environment.

I’m a woman and have been considering possibly going into a trade. If anyone here works in the trades, I’d love to hear about your experience! I’m also interested in hearing from anyone who has had to switch careers or start over professionally.

I really dislike the idea of sitting in front of a computer for 8 hours a day, although I realize that may be something I have to consider.

I’d really appreciate hearing your stories, experiences, and recommendations. What do you do, and what has your experience been like?

I had my first dose of kineret today and got this really weird heavy feeling in my head for like 12 hours after. Anyone else experience this?

For those on immunosuppressants such as Kineret do you get sick a lot?

Hi! Does anyone have low to mid grade fevers (38-39 degrees) every day (or close to) for months or even years straight? I am currently diagnosed with Behcet's so I asked this on the Behcet's subreddit too, but I know how complex and overlapping autoinflammatory diseases are (I was initially diagnosed with a different one!), so I wanted to ask here too in case anyone with any disease could relate.

Basically my current meds are doing a great job for controlling all my other symptoms (ulcers, arthritis, rashes, etc), but I'm still having these awful fevers, I feel like I have the flu all the time. This was my first real symptom and has been going on for years. I am exhausted.

This doesn't seem common in Behcet's OR other autoinflammatory diseases–I even remember a former rheumatologist once telling me that I couldn't have an autoinflammatory disease because the fevers are always periodic whereas mine are continuous... I know that is not true because AOSD/SJIA presents with daily high fever spikes...sigh. Does anyone have something closer to nonstop fever, or just more random fluctuations, rather than distinct spikes? Mine fluctuates a bit but is almost always above 38. Every day. And acute phase reactants are almost always normal.

So I'm hoping to hear from someone else who has experienced this or similar? I feel a bit like I'm going crazy! And if anyone has fevers like this, did anything help? Any specific medications? Thanks!

What's your small or big win the past few weeks? It seems about time to make this post again. Doesn't have to be autoinflammatory related even.

Mine: I'm out of a flare I was in (I think). NHL hockey is back this week. I've finally been able to read more.

Hi all, I have been lurking for a few months now, trying to avoid posting anything but I am grasping at straws and hoping for some thoughts or advice. I will try to keep this short, but I'm happy to try to answer any directed questions.

Background: early 40s female, European descent (differentiating from Caucasian because I know there are some ethnic differences in the way these diseases manifest). Two natural children. Very active, generally healthy diet. No alcohol, no smoking.

I have been a long time GI patient because the symptoms I have been most likely to complain about are my GI symptoms. I have a history of abdominal pain going back to childhood. Unfortunately, I have been pigeonholed into a GERD/IBS/gastritis box for close to 20 years now with very little relief from prescribed medications and lifestyle changes and no real explanation for why these things keep occurring. My diet has shrunk dramatically to avoid flares even though more and more, my partner and I don't think diet has much to do with this.

For a long time I've struggled with a constellation of headache (including migraine), lightheadedness, nausea, and diarrhea. In the past five or six years, I've added multiple types of rashes, some of which seem to be triggered by sunlight. Some resemble acne, and others look more like classic hives and plaques. I have a working diagnosis of solar urticaria but this seems unlikely given they both take at least several hours of exposure to appear and between 6 and 12 to disappear.

I have had recurrent canker sores since I was a child, but instead of improving with age, they have worsened. I was in a near continuous state of breaking out until earlier this year when an ENT recommended supplementing zinc. This has helped, but I still get probably 3-5 per month on average (they usually cluster).

I have a history of sterile tissue inflammation but it's largely superficial. I have had terminal ileitis on CT and, later, had it show up through multiple colonoscopies on biopsy with Crohn's and celiac disease thoroughly ruled out. I have frequent episodes of sterile pyuria with no UTI ever diagnosed. I had my gallbladder removed a decade ago and the surgeon found acalculous cholecystitis. As of a recent EGD, I have reactive gastropathy, which could be caused by bile reflux (again, no chemical triggers consumed) but I'm suspicious given how delicate my oral and enteral tissues seem to be. I also have a 20 year history of hypothyroidism, but there are never any antibodies... more on that later.

When I started to try to look at this more holistically over the summer, I remembered I do have a history of periodic high fevers with strange triggers. For example, about 8 years ago I had a colonoscopy one day and a IUD placed the next. The night the IUD was placed, I developed a high fever (103-104) for 24-48 hours. I was hospitalized when my oldest child was a baby for a similar random high fever that lasted three days. We blamed an ovarian cyst rupture for that one. I also remember going to all-night youth lockouts as a kid and immediately getting sick with a fever, like there was no time for a viral incubation period to occur. The high fevers seem to have stopped, but I now have cyclical chills and night sweats.

Most critically, while my symptoms never go away fully, the worst time of year for me is between February and September, which seems to coincide with when the days get longer here and UV rays get more intense. I spent this past June through late August in a near constant flare, and if at all possible I don't want to do it again next year. I am developing more frightening symptoms (chest pain, issues swallowing, neuropathy) as this continues. I was close to giving up.

I'm now seeing an allergist/immunologist whose wheelhouse is mast cell disorders, but I'm skeptical that this is a mast cell issue, at least primarily. A recent allergy test showed environmental allergy positives, but they were atypical "angry little pimples" read outside of the 15-20 minute time frame. Tryptase and all IgE levels were normal. I think she is skeptical too, so we're on the same page in that regard.

My blood work is persistently normal... everything looks great. This includes ESR and I assume CRP. ANA is negative, I've had bloodwork done for both Hashimoto's and Sjogren's antibodies due to severe dry eye, also negative. I cannot find any smoking guns to point me in the right direction. I have done as much of a dive into genetics as I can being a layperson. I don't have any variants in the standard genes (HLA-B27, HLA-B51) or the less common ones (MEFV, NOD2). I do have some generic alterations including a homozygous SH2B3 variant but the report just says "increased risk of SLE, RA, and psoriasis" so it's not very helpful.

Thanks so much for any insight...

Edit: Changed UTI to IUD!

Hi everyone, unfortunately it seems like I’m failing to control my FMF symptoms and have symptoms of colchicine intolerance with the max recommended dose of colchicine and will likely have to start going through the process of getting insurance pre-authorization for either canakinumab (Ilaris) or anakinra (Kineret). When I was looking at the dosage, pricing, and availability of these medications, a few questions came up.

Ilaris is dosed every month at 150 mg every 4 weeks for patients over 40 kg (around 88 lbs) and seems to be dispensed in a 1 mL 150 mg/mL bottle. The list price for this single bottle is somewhere between $20,000-26000 depending on the pharmacy (Note: all prices here are in a US context). There is a co-pay assistance program by the company (Novartis) for patients living in the US.

1. Does anyone have experience with this program? What was it like? What was your insurance situation, and what was your actual monthly cost?

Many other countries outside the US are able to prescribe these biologics for the management of FMF, though they also have guidelines on the prescription of biologic DMARDs.

2) What was the experience like for anyone who moved from one country to another?

3) Were you able to establish continuity of care for FMF easily, even if it was just for maintaining a colchicine prescription?

Kineret seems to be dosed based on body weight with 1-2 mg/kg daily as a starting dose for other autoinflammatory diseases, but I couldn’t find information on whether it was FDA approved for FMF in the US.

4) Was it difficult to get insurance authorization for anakinra in the US if you take this medication ?

It also seems like Kineret is dispensed in pre-filled syringes and costs around $200-400 per syringe before insurance.

5) If you are taking Kineret, what did the monthly cost look like to you?

This is a bit more personal, but I enjoy things like hiking, camping, and taking long trips. I was hoping to travel for a several month period in celebration of completing my master’s degree next year, but I’m feeling worried about transporting and receiving adequate supply of this sort of medication, since I’ve never had to take an injectable medication before, let alone one with storage temperature requirements. And if I were to travel internationally, there’s a chance that this medication might not be available for patients in that country.

6) Is it logistically possible to travel for extended periods of time when taking either of these medications? Or did it become really difficult?

Thanks for reading this really long post!!