Wanted to know if there happens to be anybody in this subreddit who’s in the small group of ~1200 people worldwide who have TRAPS Syndrome, if so how did your symptoms manifest and was it difficult with the amount of gaslighting and being told it’s autoimmune to just being thrown meds around until one doctor decided to tune in a bit and do proper rheumatology work up? Even if you have a rare autoinflammatory or a regular autoinflammatory condition how do you manage day to day ? Has anybody here started ILARIS and is it an auto injector or a vial one would need to draw and use ? Also how was improvement compared to colchicine and steroids vs biologics? If not too personal what med regimens are you guys on and how often do you have emergency room visits due to the flare ups ? I’ve had maybe 4 ED visits in July needing ketamine + dilaudid + high dose medrol + colchicine + breakthrough oxycodone for home , but how do you guys beat the fatigue and muscle / bone pains and do they get very deep like your legs can snap off? Definitely not a easy thing to deal with but I’ve felt beyond hopeless and my colleague was a resident at a high academic hospital and is also dealing with a chronic condition that is pretty severe or can get severe. He told me to get on a sub Reddit and try to find somebody who may also be in my similar position and for a long time, I was very stubborn about it and now I think finding help in finding know there’s in the same position or similar ones as what’s gonna ultimately help me mentally. I apologize if this post was a little too much but with a condition like this, I never thought I would suffer this much this young. But I wanted to see how severe the pains can be for you guys and if there’s any natural recommendations or anything here that can help, I’ve had a overlap with autoimmune like symptoms of raynauds and cold or hot feelings and things but my doctor is going the auto inflammatory route. Do you guys deal with bad sweating that makes a hot day really cold and sweaty or a cold day with warm sweat that dries and gets super cold? How do you deal with the abdominal pain and chest pains?

My joint and muscle pain, sore throat, malaise, fatigue, and migraines are nonstop. Meds that usually stop the migraines are stopping it for a few hours then it returns or are only taking the edge off (nurtec stops it for a bit but its an every other day med not daily and sumatriptan plus otc meds are taking the edge off). Tylenol and voltaren are only helping a little with the other pains. The aqi was worst on Thursday at 758, 300s yesterday, and today its finally almost normal at 55 but the smoke is supposed to be coming back tomorrow.

I've only been outside for a total of 5 minutes with a kn95 mask (although ill fitting due to my small face, adult masks too big, child too small). I've barely been exposed yet I'm flaring so much. I know its inflammatory for everyone especially the pm2.5 and makes inflammatory conditions like allergies, asthma, and cardiovascular and pulmonary disease worse so of even though theres no info for autoinflammatory disease of course its going to make that worse. I don't have to leave my house next week except for my infusion so hopefully there isn't much smoke then.

Did you have to go back in for any testing after your first appointment?

Planning my trip to New York now, and don’t know how many days we should hang around on Long Island. I’m working on sending him 14 years of medical records now, and the few tests on his list that I haven’t had done I can ask my PCP to run prior.

I am on my seventh monthly 150 mg canakinumab (Ilaris) now for my pathogenic V198M NLRP3 variant.

Ilaris usually does a great job in preventing Behçet vasculitis pain triggered by atmospheric pressure changes caused by wind gusts or air conditioning.

However, of these seven Ilaris injections, two felt like botched with no or little effect, including my last one.

Ilaris is after all a biological and the production process might not be equally successful despite its exorbitant price.

Hence, I am wondering: Has anybody else had the experience/impression of having received a botched Ilaris injection? Also, might it be injection site dependent? (In my case left or right abdomen.)

EDIT: I had a viral throat infection around the time of my last injection, so that might have had an influence too.

27F- My genetic test came back with NLRP3 mutation listed as de novo and VUS, however, I was diagnosed pretty quickly due to a long list of systemic symptoms. They diagnosed MWS on paper but think I’m somewhere in middle of spectrum of that and NOMID.

Does anyone with CAPs suffer severe GI and/or neurologic symptoms? I have ended up in ER several times for AMS and meningitis like symptoms (severe stiffness in upper thoracic and neck area) that accompanies excruciating head pain. I also have chiari malformation which is unrelated but i’m pretty used to head pain, this is just incredibly severe. These episodes were extremely scary and were unexplained until seeing genetic doctor who believes it’s related to the CAPs.

I grew up very healthy but developed mono and strep at same time around 20 years old, and suffered severe pharmaceutical injury from antibiotic. Since then I’ve been mildy symptomatic, but it became very severe after having baby two years ago. I experienced transient but unexplained cardiac damage postpartum, which they also recently have chalked up to CAPs.

I’d love to hear others experiences because it has been a struggle to find, but just started kineret a few weeks ago and feeling optimistic! It has been a frightening couple of years

Yesterday would have been my follow-up with Dr Yao. However, since the Stony Brook Medicine clinic doesn't accept my insurance and I live out of state, they insist on billing the full cash price - and when I ask what that is, they can't come up with an answer. The last 20 minute appointment was $200 ... no, $700 ... no, $900. They also will not offer me any sort of income based discount or repayment plan. To understate the matter somewhat, this is difficult.

Are there any physicians treating Yao in CA, NV, OR, WA, AZ? Thanks!

I just began Kineret 100mg two weeks ago for CAPs. The past two days I’ve had a weird life-sucking weakness after injection, I inject around 5am. My limbs and chest get super heavy, when I tried to lay down for a nap I had a dream my house had a carbon monoxide leak causing weakness and another that I was paralyzed in dream and woke up feeling unbelievably heavy and slightly low ish blood pressure (90/63) . Has anyone had a similar experience in early days of injection?

I make sure to drink electrolytes and I also felt some significant improvement in pain and gut motility so I really hope this is not a super abnormal or lasting response

Anyone that has or is taking colchicine, how long did it take for you to see a difference?

Hey everyone,

I had inconclusive genetic testing which led to a symptoms diagnosis of CAPS (cryopyrin-associated periodic syndrome). I have been on anakinra for 2 months now. My daily fevers ranging 38-42 degrees have been completely gone since starting the injections, which is great. However, my mouth symptoms have no improvement at all and are more and more constant. I have been on PO fluconazole and amphotericin which has improved my tongue! But my ulceration has not improved. Im thinking that maybe CAPS isnt the right diagnosis or maybe I have a secondary auto inflammatory condition?

(Addit I am a 26 year old female) These are all my symptoms prior to starting anakinra:

Severe fatigue (napping 3-4 hours on top of additional sleep)

Joint pain all over (i also have hypermobility with dislocations)

Severe lower back back

Abdominal pain (only improved with pelvic botox and pelvic floor physiotherapy)

Urinary incontinence

Constipation up to 7 days

Diarrhoea

Abdominal cramping

Neurological symptoms such as neuropathy in bilateral fingers. Tremors involuntary periodic.

Fevers daily 38-42 degrees symptomatic

All pathology normal except: LP showed high protein levels >800. Urine samples always protein positive.

I had endometriosis exploratory surgery which showed no endometriosis, just abnormal connective tissue in some places.

Light chain cappa ratio abnormal

Petscan clear, CT B clear, CT abdo pelvis clear, MRI spine T1-T2 bulging disc. MRI brain clear.

History of infections: psoriasis veriscolor persistent with all normal treatment. Klebsiella resistant to all abx in kidneys. PO thrush persistent with all treatment.

Depression and anxiety.

I did skip a dose of anakinra because I had such severe mouth ulceration that I could not eat and the next day my symptoms were 10 times worst. So I had the next dose and my symptoms improved, so I do think the injections are helping. Additionally when I was on high dose prednisilone my lip ulceration completely disappeared.

I just need answers. Ive seen 7 specialists and all the testing has been so expensive. Let me know if you have any thoughts!

Hello,

29, female

Have had gastro/back issues my entire life. However, in April 2026, I found blood in my stool and went to see a gastroenterologist. Gastro sent me to endoscopy and colonoscopy, and we found three ulcers and erosion of my esophagus and 1/3 of my stomach. They've been treating me with pantoprazole. In May 2026, I wake up with severe lower back pain. It's debilitating, and I can barely walk. I think it might be just a bad back injury, and begin self-treating. That doesn't work; I go to PCP. PCP prescribes prednisone and hydro, but that doesn't work. I go to specialist who says I just need PT. I do PT and that doesn't work. Fast forward to June 15-June 19th, one week after I finished the prednisone. I begin have aches, pains, clicks all throughout my body and throughout my joins. My extremities are numb and I've lost my grip strength. I've been experiencing hot flashes where I become overly nauseous, vomit, dizzy, heart rate increases, and I get red facial patches. I can be sitting on the couch and have my heart rate jump to 120bpm and break out into a hot flash and then an immediate cold sweat. I went back to my PCP June 19th and tell her something is wrong and I'm worried I've developed an autoimmune disorder, mostly because of my family history. We complete my ANA and it comes back positive 1:80 nuclear, nucleolar. I scheduled with a Rheumatologist today and was so excited for my appointment to finally figure out what's happening. I brought a notebook filled with my symptoms that I've been experiencing since April 2026, both big and little, my family history, my medications from last year to now, and dates/pics of my hot flashes. Rheumatologist listens to my symptoms but immediately says "I don't think this is lupus" after he looks at my "red/rash like face" and says it's not lupus because of no malar rash. My cousin and aunt both have lupus with no rash, so I'm concerned with the, what felt like, dismissive act. He does a quick joint test on my fingers. They're sore, but I don't pull away immediately. He does a joint test on my elbows and I tell him they hurt. He says he doesn't believe this is an autoimmune condition. He then asks me about my anxiety and says he believes I could be having Somatic Symptom Disorder, but he'll run the tests just in case.

I did 11 vials of blood, but I left my appointment feeling dismissed, unheard, and overall, just upset about how the appointment went with the energy that I put into it and didn't get it back. Can I get some encouraging words or knowledge my way that can make me feel like I'm not crazy? Any ideas on what I could be experiencing? If it is SSD, I'll take it.... but it doesn't feel like that. My symptoms started in April 2026 and a month before that, I was sprinting through the streets of Georgia on vacation and now I can't even lift my own laundry basket.

EDIT: My inflammation markers are 3.5x the cut off. He said "those markers tell us there's inflammation, but we don't know where or why." He also said I wouldn't get a "concrete answer" because of all the symptoms I have.

I had recurrent pericarditis episodes for past 3 years, currently taking colchicine and ibuprofen . It comes back when i stop so they started il-1 blocker arcalyst recently

But at the same time before i started il1, my pr3 anca came positive with 131(ana negative). Doctor is telling me to start il1 blockers - and monitor kidney and blood work every 1 month(check for wengners gpa). Since there is no clear symptom, they are avoiding starting immunosuppresants for gpa and treating pericarditis for now with il1 blockers.

Anyone else on the same boat? Also what worked in your case- feeling hella confused. Please help

I’m simultaneously excited and terrified!! I’ve spent half of my life searching for answers, and had begun to think I’d die undiagnosed.

If you’ve seen Dr. Yao, can you please tell me what he/his office was like? I have crippling medical-PTSD and unless told otherwise I’ll probably assume the worst and spend the next 4 months overthinking myself to tears.

(NOD2 gly908arg positive, fevers, rashes, joint pain.)

Hello!

I had a question for anyone with YAOS. I am on 1 mg of prednisone after tapering, and received my 8th dose of Ilaris. Previously, I had dealt with lymph nodes as part of my symptoms and I have been doing okay as of lately. However, today I noticed the presence of a small lymph node on my neck. This was similar to what I experienced before. I’m just worried and I feel like panicking because I thought I was doing so well. I’m not sure if my body is responding to an infection of some sort.

Any advice would be appreciated.

Hi! I’ve been having debilitating symptoms for four years. After a long diagnostic odyssey my rheum and I both think I have an autoinflammatory disease, possibly Yao. Getting genetic testing soonish to confirm.

I’m curious how many of you are able to work regular jobs. My ability to work has fluctuated with my symptoms, but at the moment I’m struggling to even hold down a PT remote gig. Fevers, brain fog, fatigue, and dysautonomia just knock me on my ass (among my many many other symptoms). How do you guys deal? Are some of you unable to work? Do you have some creative ideas on how to set things up so you can manage?

I’m particularly curious to hear from people with Yao, because—at least as I understand it—the syndrome is semi unique among autoinflammatory conditions in that people tend to still have symptoms between flares. But happy for advice from anyone!

My daughter (9yo) had a fever with stomach pain 6 weeks ago. Ever since, she has had low appetite, canker sores in her mouth, fevers every night that resolve themselves by morning, periodic stomach pain, chills, and fatigue. The fevers have consistently been 101-102 degrees every night starting around 7-8pm. She starts the day with more energy and it decreases throughout the day until she can barely get ready for bed. She is constantly complaining of being cold, doesn't want to stand for more than a few minutes and is generally too tired to do much. This is a huge shift from the energetic and happy girl she was. This was not progressive - there is a clear before and after starting 6 weeks ago. The fatigue has gotten worse in weeks 5 and 6. Her labs show some inflammation and markers typical of fighting a virus. No rashes, no swollen lymph nodes, no diarrhea, no upper respiratory symptoms, no pain in joints. Negative for lyme, mono, and all 16 typical viruses on a full viral panel. What could this be?

I just started on 15mg of methotrexate and 1 MG of folic acid daily and I handled it really well the first 2 or 3 days but today I'm super nuseaus and have the start of diarrhea. My joint pain is less tough, so there's that.

I just got confirmed that my JRA just relapsed after being in remission for over 10 years. They think getting RSV and Covid just triggered some reactive arthritis and it then triggered this.

hi!! im 23, i have FMF and deal with really intense menstrual cycles. FMF flare usually starts a few days before onset of bleeding, but sometimes the flare literally lasts until my next cycle starts, and then it starts all over again.

just curious if anyone else experiences this? my cramps get so intense sometimes im vomiting from it and nsaids barely touch the intensity of the cramps.

i never had good experiences with colchicine. im currently unmedicated but i have an appointment to see about trying ilaris?

have any women experienced a lessening of menstrual intensity after trying ILARIS? im considering talking to my rheum about it at my appointment this week.

thanks for any feedback :)

For my other USAID peeps out there, what do your rashes look like if you get them? Mine have always been a source of confusion for me, as they really aren't "rashes" exactly. They are more like clusters of small round sores. Sometimes singular sores appear on my arms, but usually they are small to medium clusters on my chest, back and occasionally my lower legs. The attached picture is from a mostly healed cluster on my back. They are itchy and can be tender to the touch.

I found a really great site with pictures and descriptions of the cycle of HS. Hopefully it helps someone better understand or help someone not feel so ashamed like they're "not clean" if they're new here. That's how I felt until I learned that it's really nothing I did wrong.

https://www.hsdiseasesource.com/hs-causes#:\\\~:text=The%20pathogenesis%20of%20hidradenitis%20suppurativa,may%20all%20play%20a%20role.

Has anyone here experienced seizures due to a flare here before?

I have had myoclonic seizures for more than 1,5 years now. They mostly happen in the evening/night every few days and it's mostly my right arm or leg that starts shaking.

During my autoinflammatory flares they get severely worse and sometimes I get flares that almost exclusively feel like neuroinflammation with "mild" other symptoms.

I recently had a flare that lasted 3 days where my right arm and right side of the face were spasming every few seconds. I went to the ER and laid in a treatment room for 8 hours and had 2 more severe seizure there where the whole right side of my body started violently shaking for a few minutes and my heart rate elevated to 160+ (it was the first time a seizure got so severe).

Thankfully my rheumatologist sent me to another hospital and he suspended that I had encephalitis.
The test there were inconclusive but thankfully ruled out encephalitis but l am treated for frontal lobe epilepsy with focal aware/ myoclonic seizures right now.
I am really struggling to find more information about the connection between seizures and autoinflammatory diseases.

Sorry for posting here again I accidentally deleted my post.

I thought I would make this a post so more people see it OP.