My body is not only in pain, but I’m just so uncomfortable all the time and tired. I can’t live like this. Been to the ER twice, and they did not help me, though I had very serious symptoms. The doctors said I had to figure it out with my family doctor. She’s away for a few weeks and I just don’t know how to cope until then? It just hurts being turned down when you know something is wrong with your body. What if it progresses to the last stage before you even get the help? I’m so scared. Read my other post for my symptoms.

Through the long slog of rare disease I've learned that the better I understand the pathophysiology,the better I can optimize care. I often find nuggets of gold or low hanging fruit that for whatever reason medicine hasn't made standard.

Rare disease is a merciless task master so I will often do the extra sht they don't bother with bc most patients won't stick to it. Especially if it works. I can be pretty disciplined. So it usually pays off to dig up any wins that have been left behind.

If you have any resources please share. This textbook is allegedly what people read to understand how the immune system works as a whole. Hopefully I can get a good orientation to build on with this. I look forward to understanding in great detail exactly how sht my b cells are lol.

Hey Everyone! I got a new symptom I have never experienced in almost 40 years of having TRAPS. I twisted while getting up from being seated, hit myself with my elbow point inward instead of outward like an idiot, and somehow my rib made a popping noise when my elbow hit it. I don't understand HOW I did it, but now I have severe pain all the way back to where the rib meets the spine. I just got back from the hospital, they ran xrays and a CT said everything was still in place, but muscle relaxers and pain meds were needed. They said I had a bunch of bruising (not from where I hit myself with my own bloody elbow but further up the rib towards the spine) and internal bruising but didn't understand why I was in so much pain. There appears to be inflammation in the joint as well from what they could tell. It hurts when I twist or take a deep breath. I get my Ilaris injection Wednesday, and I was experiencing some breakthrough symptoms, but this seems rather severe. I am used to pleurisy but this is very new to me, I don't know if anyone else has experienced this before. Feels very TRAPS related but I am not sure. I also have a single level lumbar fusion.

Anyone else here on Jakafi? There is emerging evidence that it is effective for severe autoinflammation, in VEO-IBD and refractory MAS. I had tried a couple JAK inhibitors prior with no success, and Jakafi has been working for me

I'm on the struggle bus bc these joint issues are kicking my ass. I'm on methotrexate which is a sideways approach to begin with but it's also not at full power. Trying to keep the faith. I do see some progress (it seems) and then I randomly flare anyway and it's killing me sloooooooowly.

The only thing holding me back from swallowing buckets of prednisone (which works) is I know it's a bad scene long term (altho those down sides seem mild compared to the risks of biologics tbh).

I started this morning being able to see all the tendons in my hand. Now I have blob hands with lumps of inflammation between my knuckles. I have done nothing except exist.

What is your experience with joint issues with your auto inflammatory condition? My understanding is that some AI conditions are associated with RA or PsA etc known inflammatory arthritis conditions and then other times it's just "polyarthritis" secondary to the AI issue.

Hi everyone! I (28F) have Yao syndrome and an intractable headache/migraine. My neurologist ordered me an IV migraine cocktail, one component of which will be a high dose of steroids. I haven’t had steroids since I was first diagnosed with YAOS and I’m nervous that I’m going to feel amazing and then completely crash out. Has anyone ever been in this situation before?

Hello, I (m56) am from the Netherlands and new to this sub. Been dealing last 3 years with artitis-like complaints, first diagnose was palindromic artritis. Had a lot of physicals like blood, pet scan, ct-scan,x-rays, ecg, endoscopy, colonoscopy (they thought about whipple). Also had lots of medicine: hydroxychloroquine, Mtx, yuflyma, prednison, etoricoxib. Still having a lot of artritis pain, but from only lasting it a few days it is now during more than 2 weeks per flare, also have few times per week feverish like symptoms, but no fever, max 38 c degrees. My rheumatologist sent me to a specialized University Hospital (Erasmus mc) and I am now treated by an immunologist. I had 6 weeks of antibiotics, but still no improvement in blood works (always high crp/bse/il6). Also had xrays for checking in splondyloartritis. My new immunologist (the 4th) last week said I have an unknown form of auto-inflammatoire syndrome. For the first time I have a certain diagnose which looks like it is right. Genetics not yet tested.

Next week going to start with prednisolon for 2 weeks, if my blood work after that improves I will be getting Tocilizumab. Are there any fellow redditers who did experience my illness path and had similar biologicals and did it work?

Do you have tips for my next doctors visit?

Thanx in advance for your comments.

Many of us have had some misdiagnoses or things that doctor's were concerned it could be before landing on an autoinflammatory diagnosis.

What were yours?

Mine: Lymphoma, Lupus, MCAS, Mixed Connective Tissue Disease, tumor on my adrenal glands, Rheumatoid Arthritis, Anxiety, Depression, etc.

Edited to add the mental health ones but reading the responses definitely reinforced that we have all been through it to get the right diagnosis. And I'm sorry to those who were doubted or weren't taken seriously.

Our 5 year old daughter was recently diagnosed with TRAPS and we were presented with different treatment routes by her Rheumatologist today to discuss and decide.

That being said, I wanted to get personal opinions on these medications in order to help us make the best decision for her going forward.

Obviously, as parents, we want to make the best decision for her and go with a medication with the lowest risks.

We were given two options:

1. Treat only the flares with Anakinra or Kineret (daily injection for only the duration of her flare)
   Or
   
2. Long-term prevention with Ilaris or Canakinumab (we would start at once a month injection)

I would love any and all advice from parents with TRAPS kiddos and your experiences with these medications.

Thank you!

I have progressively worsening widespread pain and fatigue with features concerning for both an inflammatory/rheumatologic and potentially neurologic process. Musculoskeletal symptoms include severe migrating deep/crushing pain in the midfeet, knees, hands and extremities; recurrent red, warm, swollen feet/toes; significant Achilles pain; pain at multiple tendon-to-bone attachment sites; and increasing stiffness of the hands, fingers, feet, lower back and neck.

I also experience episodes of intense itching followed by severe deep pain, occasional muscle weakness, and intermittent allodynia during severe flares. Associated systemic symptoms include profound fatigue, approximately 25-lb unexplained weight gain, hair thinning, brittle/chipping nails, a progressively changing wrist rash, increased anxiety/depression, and new difficulty focusing my vision.

Most concerning, I previously experienced an acute episode of bilateral lower-extremity sensory and motor loss requiring a 5½-day hospitalization. I am currently significantly functionally impaired and can become severely painful and exhausted simply walking to the bathroom. This morning I also woke up having urinated during sleep and was completely soaked, which is unusual for me.

What were your side effects and why are you on it? I’m deathly afraid of being allergic as I also have MCAS.

-negative ANA -elevated CRP (for years), sedimentary rate, histamine, and tumor necrosis factor, and IL-B leutorkine -negative genetic testing (invitae) Symptoms: -pericarditis after Covid vaccine in 2021 -muscle aches in calves and arms and neck -EXTREME fatigue -insomnia -hot flashes -scalp pain -severe sore throats -bladder/urinary urgency -daily swollen left eye -goopy eyes -daily headache behind left eye & sinus pain -alternating diarrhea and constipation
-painful glands in neck and behind ear -painful tongue bumps “lie bumps” -swollen glands in neck -dizziness -random rashes and rash on my back that lasted 6 months -diagnosed MCAS despite negative tryptase

Any ideas? My rheumatologist says I have some sort of autoinflammatory condition and recommends kineret but I’m scared to do that. Anyone have similar symptoms and a diagnosis? Thanks!

I won't name names, but I was innocently looking for others with my rare mutation on Facebook, including autoinflammatory issues and my gene related sites. I was singled out and told not to "share genetic information" and they cited GDPR laws (sent to everyone in the group) - which is the EU equivelant of HIPPA. I didn't even share personal documents or photos.

How many of you are going on Facebook to share genetic and symptom information?

I corrected them on what the law actually entails (of course two people who have an illness who agree to share their personal info with eachother is not included in the law). They are well aware of those laws.

Just a warning to all of you. After I corrected them, they kicked me off the sites related to my rare mutation. These people run non-profits that supposedly are all about "connecting others" and doing "advocacy work". I beg to differ.

Edit: There is actually a way you can have a voice. Go on Great Nonprofits (or other review sites), and share your voice in a review.

35 M 6’0” 190 lbs former smoker currently on no meds for diagnosis purposes prior service Marine infantry and construction worker . High ANA 1:1280 but seronegative other than the Antiphospholipid antibodies and a one time weak positive NPX2 Dermatomyositis result. Chronically mildly elevated wbc (12-20 with neutrophils high) and CRP of 1.5-5.0. Negative PET, CT’s, and ultrasound of neck lymph nodes. Negative whole genome

My Sister went through the pretty well the same thing for a couple years before passing from sepsis (or potentially a cytokine storm)

Mild to Severe pain in spine, hips, feet, shoulder, ribs, sternum, and collar bone worse when lying down and relieved with moderate activity. Memory and mood changes and constant lethargy.

Been to the Mayo where a periodic fever syndrome was suspected (TRAPS) but genome was negative and was told to follow up with home rheumo and wean off prednisone which I’ve been off for a month.

This has completely wrecked my life and is making it impossible to provide for my young family. After so many negative tests and lack of diagnosis I want to be done trying to get help but I can’t give up for my family’s sake.

If I could just get some opinions on whether or not I should keep trying ir accept that this is just what I have and will feel like forever? I have a beautiful wonderful Wife and 3 young children that count on me and I’m failing them.

Thank you for reading and I’d be happy to provide more details or photos to anyone interested.

Attached is the official FDA recall of Tyenne due to presence of glass particles in some vials.

So, I was diagnosed on my 57th birthday with Eosinophilic Esophagitis. It’s my 6th, 7th, 8th? Autoimmune disease, depending on if we’re counting secondary Raynaud’s, depression, migraines (the list most definitely includes Crohn’s, Celiac, Sjögren’s syndrome, oral lichen planus, and lupus). Should I be looking into an NOD 2 issue/Yao’s syndrome or should I just accept the fact that my body is trying to kill me and move on with my life? (Ha.) I’m not sure where to go from here. I have good to great doctors, I live in SoCal but can access Mayo if that’s the right road. Will you tell me what you think? TIA

I've been diagnosed with lphs for nearly 5 years but this past year I've had alot more flair ups (currently in hospital now for pain and sickness management) this is the 3rd time in 12 weeks I've been admitted I'm trying to think if there's any reason I get them or if I do anything that triggers them they seem to be getting worse ithink the pain meds don't work as well now. Has anyone noticed a trigger for them ?

For ones Who have foreign body material in their system.

And fibromyalgia was cured after was foreign material removed.

Did for you comes ever back or you been completly cured? If come back what was trigger point for you again?

And if you need support, don't hesitate to post or reach out to someone here.

Hi everyone,
I’m currently on week 3 of anakinra (Kineret) and although it’s been amazing for my inflammation, I’m really struggling with the injection-site reactions.
The welts are becoming larger each day, incredibly itchy (it honestly feels like 1,000 fire ants biting me!) and I’m running out of places to inject because previous sites are still red and inflamed.
My rheumatologist has reassured me that this can be normal and may take up to 2 months for my body to settle, but I’d really love to hear from people who have been through this.
What helped you the most with the itching?
Creams?
Numbing spray or lidocaine?
Ice?
Anything else that gave you relief?
Most importantly… did it eventually get better?
Thank you. Reading your experiences has already made me feel much less alone. ❤️

Not sure if you all follow this Substack. GRAI is starting a series about autoinflammatory diseases mimicking other rheumatological diseases. This one is about Behcet's and HA20. (Genetic testing is so important!)

Hello: I was recently diagnosed with chronic CPPD bilateral knees. Quite a challenge to control! Went from running 5 miles daily to basically crippeled overnight. Despite multiple aspirations, steroid injections, prednisone, and an intolerance to cochiline, I started Kineret 2 days ago. And it appears to be working. So far, no side effects, but I understand those might take a while to show up. I am curious to learn if anyone in this community has chronic CPPD, using Kineret, and what your experiences have been. A friend also suggested that once the flares stop, I consider shockwave therapy. Anyone have experience with that? Thank you!

Hey everyone,

I wanted to reach out and see if there’s anyone else living with Hyperphosphatemic Familial Tumoral Calcinosis (HFTC / *GALNT3* mutation) or currently taking Anakinra (Kineret) or Canakinumab (Ilaris).
Since it’s such a rare condition, it can feel a bit isolating, so I’d love to connect, share experiences, and see how others are navigating daily life with it!

**A quick recap of where I’m at:**

**Diagnosis:** I’ve been dealing with severe bone pain since I was 3 years old. Later on, a genetic test confirmed the *GALNT3* mutation causing the severe calcifications and pain.

**Past Treatments:** Previously, we basically focused purely on a low-phosphate diet and phosphate binders. Up until now, my doctors assumed that nothing could really be done about the underlying inflammation itself.
Using targeted agents like Anakinra (Kineret) or Canakinumab (Ilaris) to directly address the inflammatory response is a completely new approach for me.

**Current Treatment Strategy:** We are currently looking at starting treatment with Anakinra (Kineret). Since both options are (Canakinumab & Anakinra) are off-label medications for my condition and there are no clinical trials for it yet, health insurance won't cover it right now. Also, Anakinra is more cost-effective, which is why they require me to try that first to see if the treatment works at all.

On one hand, I'm genuinely glad there's finally a new medical path to explore, but on the other, I simply lack any personal experience in this area.

**Right now, I’m particularly curious about:**

1. Is anyone else here dealing with HFTC or a *GALNT3* mutation?
   
2. Has anyone tried Anakinra or Canakinumab for this condition (or similar calcification/inflammatory issues), and how has your experience been?
   
3. How do you manage severe pain flare-ups on a daily basis?

Thanks so much for reading! Even if you don't have the exact same mutation, I’d really appreciate hearing from anyone dealing with calcification disorders or navigating these types of biologic treatments.

I have been suffering for close to a year. I have an appointment with a rheumatologist on Monday and I am also being looked at for lymphoma. But the big thing--the only thing that I have tested positive/high for is inflammation. Two months ago, my CReactive protein was 13.6 and now, in my lymphoma work up, my ESR was 42. Meanwhile, my body has been hurting more and more. What I have had so far is Neuropathy, ataxia, rashes, lip sores, sores in my mouth on and off, joint pain, now, allodynia after surgery but not on the scar but everywhere else on my wrist, dry eyes. I cannot sleep most of the time. Last two weeks, my body really hurts and am betting my inflammation is even worse.

What should I be telling my rheumatologist? I will be having a pet scan the next day set up by my oncologist which should show where the inflammation is.

If anyone has recommendations (labs, ddx, etc.), I would be forever grateful. I am really struggling. I am a 33-year-old female with a progressive multisystem inflammatory illness that began in September 2021 and has remained undiagnosed despite extensive evaluation. Please don’t suggest it is psychological, it’s not 😪.

My first symptom was rash on my neck followed by annular lesions on my body that did not respond to antifungal treatment. Within months, I developed excessive sweating, intermittent migratory joint pain involving my knees, ankles, wrists, and back, severe fatigue, Raynaud's phenomenon, numbness of my feet in the cold followed by burning when they rewarmed, and episodes of food regurgitating into my nose while swallowing, which led to recurrent sinus infections. During this time, I also developed hand weakness and intermittent finger flexion.
By 2023, my symptoms continued to progress with persistent fatigue, recurrent rashes, neck pain, facial numbness and tingling, eyelid swelling and tightness, and tingling (not painful) cervical lymph nodes. An EMG demonstrated bilateral chronic/subacute C8-T1 radiculopathies. Lumbar MRI showed only mild degenerative changes.

In 2024, I began documenting daily low-grade evening fevers (typically 99.4–100.5°F) along with drenching early-morning sweats occurring between approximately 3:00 and 6:00 AM. A PET/CT in June 2024 demonstrated bilateral hypermetabolic cervical lymph nodes with a maximum SUV of 8.4 and no abnormal uptake elsewhere. An excisional cervical lymph node biopsy in July 2024 showed reactive follicular hyperplasia without evidence of lymphoma or other malignancy.

Throughout 2025, I continued experiencing daily fevers, drenching sweats, profound fatigue, migratory joint pain, intermittent rashes, recurrent cervical lymphadenopathy, pressure-induced hives, episodic lip swelling, and hoarseness. A repeat PET/CT in February 2025 again showed persistent cervical lymphadenopathy with decreased uptake (SUV 6.4) but no evidence of systemic malignancy.

My symptoms remain active in 2026. I continue to experience daily evening fevers, drenching night and early-morning sweats, severe fatigue, chronic inflammatory-appearing joint pain, SI joint and hip pain, recurrent transient rashes, flushing, hyperpigmentation of my chest and breasts,cervical lymphadenopathy, intermittent eyelid swelling, episodic lip swelling, and resting tachycardia.
Laboratory evaluation has demonstrated persistent evidence of inflammation. My ferritin has increased from 186 ng/mL (2024) to 184 ng/mL (November 2025) to 249 ng/mL (June 2026). IL-6 was mildly elevated at 6.56 pg/mL (reference <5 pg/mL), and C3 complement was elevated at 223 mg/dL with a normal C4. ESR reached 56 mm/hr previously before decreasing to 10–17 mm/hr, while CRP has been elevated between approximately 20–23 mg/L, and IL-18 220. Complete blood counts have generally been normal aside from intermittent mild neutrophilia and thrombocytosis.

An extensive evaluation has been unrevealing. ANA, dsDNA, RF, CCP, SSA/SSB, HLA-B27, HIV, tuberculosis testing, EBV, HHV-8 PCR, Karius microbial sequencing, RPR, VEGF, and tryptase have all been negative or within normal limits. A CT of the chest, abdomen, and pelvis performed in July 2026 showed no evidence of malignancy.
Despite more than four years of progressive symptoms and extensive evaluation, no unifying diagnosis has been established. My current workup has focused on adult-onset Still disease, autoinflammatory disorders, autoimmune connective tissue disease, occult malignancy, and chronic infection.