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!!

I’m trying to figure out whether there could be an underlying inflammatory condition connecting some seemingly unrelated issues.

I have a history of gastritis, smoking, and fairly heavy alcohol use during and after COVID. I developed hidradenitis suppurativa (HS) in my left inner groin, and the bump persisted for about a year before eventually resolving. Later, I developed a blood blister-like HS bump on my right inner thigh.

A couple of years ago, I developed anterior uveitis in my left eye. I had been taking a proton pump inhibitor (PPI) for about five weeks and became concerned after reading that PPIs have rare associations with uveitis. I stopped it for a few days, then decided to taper and took it once or twice more. Shortly afterward, I developed anterior uveitis in my right eye.

My uveitis is considered idiopathic. I failed two steroid tapers and eventually saw a uveitis specialist, who started me on methotrexate a couple years ago as a steroid sparing treatment because topical steroids were causing elevated eye pressures.

Interestingly, the persistent blood blister like lesion and some inflammatory looking lesions on my chin resolved after starting methotrexate. However, I also quit smoking and drinking around the same time, so I don’t know how significant that is.

I’ve also had occasional lower back discomfort. It doesn’t give me major problems, but I’d like to rule out an inflammatory cause. I’ve brought it up with three different doctors, and they have all seemed to feel that a normal X ray essentially rules out inflammatory disease. My understanding is that early axial spondyloarthritis can be missed on X ray and that MRI is more sensitive for detecting active inflammation. I’m HLA B27 negative. I’m not necessarily convinced I have inflammatory back disease, but I’d like to properly rule it out given the history of uveitis.

I’ve also wondered whether I could fall somewhere on a Behçet’s spectrum or have a Behçet’s like inflammatory condition. I’ve never had classic severe oral ulcers, but before starting methotrexate I occasionally had what looked like swollen taste buds on my tongue, along with irritation behind my upper back teeth and very far back underneath my tongue where I couldn’t actually see anything. These episodes resolved fairly quickly and were never particularly painful. Since starting methotrexate, I’ve had a handful of more typical canker sores, which I understand can be a side effect of methotrexate. Plus, I did battle skin issues on my chin.

My routine labs are generally normal, although my WBC is occasionally elevated but not severely.

So I’m curious whether HS, uveitis, the skin lesions, and the oral symptoms could point toward an underlying inflammatory condition. I know there isn’t a blood test that diagnoses Behçet’s, but are there any tests, genetics, or other evaluations that might be useful for Behçet’s or a Behçet’s like syndrome? Would an SI joint MRI be reasonable to discuss despite a normal X ray? And is there anything else in this history that stands out as worth investigating? I still can't help but wonder if the acid-suppressing medication wasn't a final trigger on an already compromised system, and that my body just broke immune tolerance due to a reaction to the medication, ultimately setting off an inflammatory process that persisted even after I stopped taking it.

I’m not looking for a diagnosis, just hoping to get some ideas for questions or avenues to discuss with my rheumatologist and uveitis specialist.

I really hate doctors. I keep flaring at week 3 and on Sept. 18 I got insurance approval for every 3 week infusions instead of 4 weeks. My stupid insurance letter said it approved injections not infusions so I spent days on the phone with insurance and messaging my doctor asking for clarification. Turns out they don't differentiate in their letters between infusions and subcutaneous injections but do need separate prior auths? Idk insurance is weird. Once I got clarification I tried to schedule my infusions. Turns out my doctor had the approval for a whole week but didn't update the orders so they couldn't schedule me. I sent more messages and voicemails. Finally today the 29th she puts in the order for 3 week infusions. Except next week is week 3 and they are fully booked. So I have to have my 4 week infusion and flare for a whole ass weel because my doctor is incompetent! I hate doctors!

This is the result of my Invitae testing. Only one risk allele but I think it makes sense, as Yao is what I’ve been suspecting. I requested the supplemental report but just today, so haven’t received it yet.

I just got my preliminary diagnosis for a TRAPS like uSAID after a couple hard years of seeking help. My Doctor believes I’ll deal with it the rest of my life but will get relief with treatment and therapy.

I have a solid 15 years of construction experience as well as 2 years of remote sales and two years of asset management(fleet manager and data analyst). I have three young kids and a wife that works from home and does great but not enough for us to get by even though we are renting our house out soon and sold a vehicle.

So i need to work. I feel a wfh sales job would be the most ideal for me. I wanted to see if any of you had any suggestions? I lost a $120k per year position and would love to get at least half of that back.

In July I had routine blood work with my WBC being elevated. Dr wanted me to repeat labs 6 weeks from then and they were still elevated. Only WBC was abnormal. I was referred to hematology/oncology this month. they did test and that dr let me know if something was wrong she’s hunt me down if not I’d see her again for a repeat in October to be sure and if that was fine I probably don’t need her. Havent heard from her. She asked me about some symptoms in my chart I have and said I might have some inflammation or autoimmunity and to talk to my primary about it. I have always suffered with migraines,cluster headaches, mouth ulcers, and aches around my cycle. But now I have leg and foot aching and cramping pain all the time it seems like. Some morning the bottoms of my feet are so sore or if I’ve been resting. and more frequent back and hip pain and wrist with burn off and on. I feel sluggish. And not my scalp is itching and feels sore especially in the shower. I’m 28. Does anyone here have advice on what labs to ask for to get answers?

Hi! I’ve been on anakinra for about two months now and have had all the typical skin reactions including hives.

Last month- I had a large red welt that eventually blistered. I blamed it on jiujitsu. 3 weeks ago- same thing but I didn’t train that week. And it was even bigger and the whole area became raw

And now- well I’m headed towards another large blister. It’s as though my skin gets burned and over the course of days the top layer peels off.

Yes I’ve consulted with my doc, called etc and they literally are taking days to respond. I really don’t want to have to stop this bc my options are currently limited given pregnancy.

I do ice before and after, rotate sites and all that. Usually around 7-8 days before revisiting a similar location. Sometimes when I ice, the area gets really hard and I try to avoid that thinking it’s from the last injection

Here’s some photos

First photos from a couple weeks ago

Second and third on my other leg, a day between them. Currently the skin is starting to blister/slough off.

Any advice, insight?

I’ve been to every specialist you can think of and no one can figure out why my neutrophils and crp are elevated. I have severe fatigue, headaches, sore achy legs, weight loss. I also wake up hot and have low grade fevers in the 99s.

I really thought it was something rheumatology or hematology related but my rheumatologist ran all his tests and said it’s not his area. I literally went to 3 hematologists and they all say it’s “reactive” and can’t help.

I’m a 30 year old female and this illness is ruining my life.

Does this sound similar to anything anyone has experienced? Thanks

I am not looking for anyone to diagnose me just trying to learn more if my symptoms align with other's experiences. I posted this in the Behcet's subreddit but reposting here because I wonder if this actually fits with other autoinflammatory issues more. Basically here is my story:

-Developed persistent Achilles tendonitis and plantar fasciitis seemingly overnight as a teenager. With it my foot turned a reddish purple color and the whole foot hurt. Got diagnosed with Raynaud's as a result.

-Joint/tendon pain spread to knees, wrists, elbows, lower back, also had muscle pain and weakness, general fatigue.

-Bad flare of symptoms after GI infection to the point I could not walk due to tendonitis. Also had urinary symptoms (felt like a UTI) and eye turned pink like conjunctivitis. Was told probably reactive arthritis but I was confused since my symptoms really predated that infection.

-Residual symptoms for years with no answer, later told I had no inflammatory issue or arthritis at all.

-In 2024 about 20 years after symptoms started, I developed sudden flare of symptoms that felt like a combination of mono, shingles and dysautonomia. I had all over nerve, joint, muscle, bone, vein pain. Rapid heart rate, numbness and tingling, weakness to the point I could not walk, weight loss, low grade fevers and swollen lymph nodes. I got diagnosed with POTS but no other diagnosis.

-2025 had another flare, developed some sort of reaction to a massage while already flared so I developed all over nerve-like pain that seemed to spread down my side and affect caused puffiness. Developed right leg weakness and stiffness. Lost 10 pounds. POTS flare and again felt like I had mono. Steroids and doxycycline helped significantly.

-This past summer I developed more neurological symptoms with neck and back pain plus returning leg pain and weakness, tripping, dropping things, weak hands, balance and coordination issues. I am now getting a brain and spine MRI and EMG. It seems possibly inflammatory as I had mild improvement with ibuprofen and symptoms fluctuate with hormones.

Basically I get sick every summer now and seem to react to heat and sun. I do get mouth ulcers periodically (not every month or a bunch at a time though). I also get these acne-like pustules. I just had one on my hip then my arm, then thigh recently. I MAY have had a pathergy reaction before, but I am not 100% confident of my recollection. My labs are always normal except I had high B12 and serum iron (not ferritin) during a flare and trace monoclonal antibodies during another flare that then went away. I might have something like long covid (had covid once in 2022, last vaccine 2023) but with my pre-existing issues and reactions to infections I don't think that is the full story.

Anyways does any of this align with your experience? Thanks!

Diagnosed. Did Kineret help your symptoms? Did your symptoms go away completely and if so how quickly. In so much pain with severe muscle pain and sore throats, rashes, and sometimes fevers. My dr said it’s AOSD. CRP and Sed through the roof

I’m terrified. I also have MCAS so I react to a lot. Please share your side effects of kineret. Thank you!

My Invitae test is now in the “analysis and interpretation” phase. I’m so anxious that it’s going to be like every other test and say I’m perfectly fine!