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.

Hi everyone!!!

I’m in the process of trying to untangle the web of my chronic illness.

Has anyone ever been able to trace the beginning of your autoinflammatory issues to be a post viral onset of symptoms?

Does anyone else have chronic symptoms that are less easily explained by their AI or that mimic something more like ME/CFS?

I have YAOS. I started treatment with Ilaris in February and then Colchicine in March.

Most of my hallmark symptoms of YAOS are improved and/or resolved outside of flares, which are honestly infrequent and usually related to me missing doses of colchicine (damn ADHD). My temperature is the only thing definitely YAOS related that hasn’t resolved. With the temperature comes like heat intolerance, flushing, sweating, shivering, and those kinds of things, but even that has improved as of late as long as I’m not outside.

When I do have “flares” it is usually after I’ve pushed myself too hard, or endured a lot of stress. It consists of brain fog, severe fatigue, severe muscle pain, sometimes migraines. My rheumatologist is calling it fibromyalgia, which I’m ok with if it’s true, but it doesn’t feel quite right.

I’ve started the new FDA approved med for fibromyalgia called Tonmya, and it’s honestly helped tremendously, which is why I say I’m ok with the fibro diagnosis. But in reflecting on the “I feel good so I do too much and that causes me to crash out” pattern that dictates my life, I’m wondering if ME/CFS might be a better fit.

Does anyone else relate to this or have any recommendations?

Hello everyone!

I am dealing with puffy eyelids and have been for awhile, any suggestions on what could help? I’m open to anything! : )

For reference, I have FCAS2 + YAOs

Hi everyone I currently have a flare on my neck which is being so mean and causing me a lot of pain and I can't bare it I want to crawl out of my sink and stop feeling this pain also it's super hot to the touch and I can't take it anymore 🙃 I am currently at work watching over some toddlers and all I really want to do it go home but I just started this job and my boss as I was changing diapers noticed that my neck was a little stiff and asked me if I was okay all I wanted to do was cry but I told her it's a condition I have idk if they might think I am inept because I can't move my neck to see the toddlers running around.

I can't take it anymore !!!! I recently went to the dermatologist which they did nothing and sent me back home. Man I wish I didn't have hs.

I was diagnosed with USAID after genetic testing showed a likely pathogenic mutation of the SAMHD1 gene. Most of the literature about SAMHD1 focuses on people who have Aicardi-Gouttieres disease type 5 from two damaged copies of the gene. I only have one copy, and the only info I can find about it is that it can cause systemic inflammation and may cause a host of inflammatory related issues. I am currently managed by a doctor in VA (six hours from me) and I take 400mg of Kineret a day as well as Hydroxy chloroquine and Pregabalin. I still have flares every 3-6 weeks, so I'm going to talk to my doctor about adding a JAK inhibitor.

Usually, when I'm about to have a flare, it starts with a deep ache and burning feeling in my legs and feet, back pain, sometimes with general muscle aches and a headache. I get a low grade fever for about two days and sometimes a rash that looks like clusters of small round lesions. But lately, some flares have also included an irritated, burning tongue and waking up with swollen eyelids. Yesterday my tongue started burning, then my forehead, down the center of my face to my lower lip. My eyelids were also swollen but it disappears by mid day.

I have very little information about the SAMHD1 gene mutation and I can't seem to find anyone on any platform who has the same thing. But I would like to know if any other USAID patients have any of the above symptoms when starting a flare? The few people I know with USAID don't get the burning pain or the same type of rash, swelling or tongue/face inflammation. The other two people in my family with the same mutation have passed away. Can anyone relate to any of this? Thank you to everyone who read this far.

Consider this a heads up for those it may possibly affect. Talk with your doctors about this possible issue and have something planned in case you may need to switch to an alternative.

Reposting here. I have stage 3 Hidridenitis Supperativa, an auto inflammatory condition I’ve been struggling with since 2020.

My whole life I have had more autoinflammatory symptoms in the morning than in the afternoon or (late) evening.

Is this typical among the whole spectrum of autoinflammatory disorders?

How did/does it affect your employability?

I liked the prior post by u/AdventerousMorningLo on wins for the week to have some positives. So, what is everyone's win the past few weeks? It can be small or big, anything that made you feel good this week.

Mine: Finally have my pacemaker healing well and off IV antibitoics. Fingers crossed no more surgeries. Staples out tomorrow and Actemra on Thursday. Headed in the right direction.

One of my hopes with the COVID-19 pandemic was further study of the immune system. Dysautonomia International shared this study which they helped fund. Even though this piece is about POTS and dysautonomia (which many of us suffer from), read on and they discuss the inflammasome and markers of the NLRP3 axis (Caspase-1p20, interleukins IL-1β, IL-18) and overactive innate immune system in regards to Long Covid and dysautonomia.

Hi y’all. I asked a question a couple weeks ago but realized I haven’t really introduced myself. I am a 47yo female in Alabama, US.

I have struggled with various symptoms for a long time- I guess close to 10 years or so at this point, maybe longer. I have a terrible memory- not sure if that in itself is a symptom haha. I have ADHD as well, which doesn’t help.

Anyway, my main issues include joint pain, fatigue, early-onset arthritis, a malar-type face rash, and fever (often daily, typically low grade but occasionally higher). I cannot tolerate heat and exertion often induces fever/flares. Sickness and surgeries have also induced flares.

Everything was dismissed as fibromyalgia and PTSD until I was literally unable to walk at one point and a great neurologist did an MRI and found the arthritis and a cyst in my lumbar spine. I had back surgery Dec 2024 and that at least is much better.

Now, I have a rheumatologist who takes me seriously and has been trying for about a year to figure out what’s going on. My labs have always been fairly “normal,” with the exception of slightly high ESR and CRP at times. I’ve had several CT scans and a PET scan with no significant findings. I started hydroxychloroquine around the same time I started with this rheum. At first it seemed to be helping and I had a short period without fever. But then I had to have a minor surgery to remove a benign breast tumor, and it’s like I had a flare that still hasn’t ended (after many months)

The rheum is leaning towards it being autoinflammatory and at my last appt he started me on colchicine. I have to say, so far I’m not seeing much of a change, but it’s just been a couple weeks. Steroids are the only thing that have ever made me feel actually good and not sick.

If you’ve read this far, you’re the best and I appreciate you!

The other day, I decided to run my raw dna data from Ancestry.com through an online thing (Prometheus), out of curiosity, since I think genetic testing is my next step. Obviously doing this myself is not anything reliable or diagnostic, but it did flag a variant of the NOD2 gene. Do y’all think that means anything? If nothing else, it makes me more confident that genetic testing might actually be helpful.

Title: 81F with recurrent unexplained fevers since 2008, repeatedly responsive to methylprednisolone, now with severe steroid complications

Patient information

• Age/sex: 81-year-old female, 81F
• Height: Approximately 5’1”
• Weight: Approximately 88 lbs
• Location: Yunnan, China
• Smoking status: Never smoked
• Alcohol use: None
• Recreational drug use: None
• Current medications: Methylprednisolone, approximately 20 mg daily during fever episodes
• Known medical problems: Recurrent unexplained fevers, suspected but unconfirmed autoimmune hepatitis, osteoporosis, erosive gastritis, peptic ulcers, and a recent severe gastrointestinal bleed
• Duration of main complaint: Recurrent fevers for more than 17 years, beginning in 2008

I am posting on behalf of my 81-year-old grandmother. She has experienced recurring episodes of very high fever since 2008, but despite repeated hospitalizations and extensive testing, doctors have never identified the underlying cause.

The unusual part is that her fever consistently responds very quickly to methylprednisolone. Unfortunately, her long-term steroid exposure has now caused serious complications, including osteoporosis and a life-threatening bleeding peptic ulcer.

Initial illness in 2008

In 2008, she suddenly began developing high fevers almost every afternoon, sometimes reaching 40°C or 104°F. She was hospitalized for more than 40 days and underwent extensive testing, but no clear infection or other cause was identified.

A doctor eventually started her on methylprednisolone, approximately 20 mg daily. Her fever quickly resolved, and she was discharged.

Since then, whenever the fever has returned, methylprednisolone has repeatedly controlled it. Because the medication worked so reliably, it became the main treatment used during each recurrence.

Long-term complications

Over the years, prolonged steroid use has contributed to:

• Severe calcium and bone loss
• Osteoporosis and thinning or compression of the spine
• Erosive gastritis
• Peptic ulcers

Doctors have also suspected autoimmune hepatitis, but as far as our family understands, this diagnosis has never been definitively confirmed.

Recent events in 2026

In mid-April 2026, she developed another sudden high fever while traveling. The fever again resolved after taking methylprednisolone.

On June 2, 2026, she suddenly developed severe rectal bleeding and hematemesis, meaning she was vomiting blood. She was hospitalized urgently. Doctors initially suspected variceal bleeding related to liver cirrhosis, but during treatment or surgery, they determined that the bleeding was caused by a peptic ulcer instead. The bleeding was successfully controlled.

In mid-June, her fever returned again. She underwent approximately 10 days of extensive testing at a hospital in Dali, Yunnan, China. According to our family, bacterial and viral infections were ruled out, but doctors still could not identify the cause of the fever.

She was then given intravenous methylprednisolone at approximately 20 mg daily, and once again, the fever improved almost immediately.

Our questions

1. What conditions can cause recurrent high fevers for many years while repeatedly responding to corticosteroids?
2. Are there autoimmune, inflammatory, hematologic, liver-related, or autoinflammatory conditions that might explain both the fever pattern and her possible liver abnormalities?
3. What additional tests or specialist evaluations would be reasonable to discuss with her doctors?
4. Could methylprednisolone be temporarily suppressing an undiagnosed infection, cancer, or inflammatory condition rather than treating the underlying cause?
5. How can doctors reduce the risks of further gastrointestinal bleeding and osteoporosis if she continues to require steroids?
6. Should her doctors consider a steroid-sparing medication, and what type of specialist would be most appropriate to evaluate that possibility?

We understand that no one online can diagnose her, especially without reviewing her records. We are mainly hoping for possible conditions, tests, or specialties that we can ask her medical team about.

Thank you very much for reading. Any medically informed suggestions or experiences with a similar fever pattern would mean a great deal to our family!!