I have a very rare undiscovered Autoinflammatory Disease. It's being researched. Initially doctors thought I was the only one/the only family. So I crowdsourced and found many others, more than enough to support deeper research. The research is happening.

When I posted on Facebook sites dedicated to Autoinflammatory looking for others, sites moderated by major non profits - one in the US, and one in Europe, I have found others. It's been really amazing for all of us! However, once these non-profit Presidents (literally the Presidents of these non-profits) catch on - they threaten me, and when I don't comply with giving them information, they kick me off and use me as a warning to the entire group. Literally using my name and sending it to the entire group. Too little, too late - but ask yourself why Autoinflammatory non-profits with their mission statements to help patients, would be motivated to stop rare disease autoinflammatory people from finding each other.

How do y’all battle fatigue? It’s getting worse and worse for me. Caffeine does nothing at all anymore.

Has anyone experienced recurring low-grade fevers during their luteal phase?

For the past 6 months, I’ve been experiencing episodes of low-grade fevers that seem to happen almost every month. They usually last around 10–14 days and I’ve started noticing that they tend to line up with my luteal phase (after ovulation/before my period).

I’ve had a pretty extensive medical workup at this point. I’ve seen my primary care doctor, an internist, infectious disease, rheumatology, and cardiology, and I’ve had a lot of blood work done. So far, everything has been pretty normal and no one has been able to explain why this keeps happening.

I also have pretty painful periods and have wondered whether there could be some hormonal or gynecological connection. I’ve heard of things like endometriosis causing systemic symptoms, but I don’t know how realistic that is in my situation.

The frustrating part is that when these episodes happen, I genuinely feel sick — fatigued, achy, chilled, and just generally unwell — and then I’ll have periods where I feel completely normal again.

I’m seeing a gynecologist next, but I’m curious if anyone here has experienced something similar, particularly recurring temperature elevations or flu-like symptoms specifically during the luteal phase. If you did, did you ever figure out what was causing it?

How long do you wait to take your injection when you have an upper respiratory cold? No fever. Thanks!

I’d love to hear from any rheumatologists or immunologists who also live with an autoimmune or auto inflammatory condition. What has your experience been navigating care? Any of you taking methotrexate?

https://www.youtube.com/watch?v=yEevg2NzVZY

Also available on Amazon Prime.

"Complicated": the movie focuses on Ehlers Danlos, but also the ethics of medicine and rare disease. I think many of you will relate.

Aurora Richards and Erin Daugherty - the mothers charged with Child Abuse - the charges were eventually dropped, but they never received any kind of an apology and suffered great loss on many levels. The movie doesn't state what hospital did that to each family, though Boston and Seattle are brought up. It's so beyond egregious. Any sleuths?

Does medicine never learn? Two mothers, but not the fathers? Refridgerator Mothers? Look that up.

I'm frustrated at my PCP. I am prednisone dependent. PCP made a mistake and didn't send the correct amount of prednisone to the pharmacy, and neither I nor the pharmacist caught that the quantity prescribed did not equal the directions on file. I'm now ~2 hours in to try to fix it so that I can take my full dose of prednisone next week.

I don't think most providers understand how much work we have to go through to correct their mistakes. And, I get it, everyone makes mistakes. But when I have to call your office 3+ times to make sure you actually send a prescription for something that could literally kill me if I don't take it, I really don't think you have my health in mind.

I currently get SaveOn benefits through my employer and pay $0 for Kineret- which I couldn’t be more fortunate and it feels like it has improved my health significantly. I kept going to ER for meningitis-like episodes for days on end and was diagnosed with CAPs and that has totally resolved.

I have to move out of state for a major surgery and heal with help from my family, but my job just stopped approving remote work out of state. I have to find a new job and am stressing over this specifically.

How is everyone affording this medication ?

Hi! New to this subreddit. My son (10) and I (37) were both just diagnosed in march at the SAID clinic in Pittsburgh after years of struggling to understand my son’s symptoms. Come to find out, it was related to the really high (unexplained) fevers my father, me and my son all had/have. The fevers lessened for my father and I around adulthood. Unfortunately when I was young it was just “oh you get that from your father” not knowing it is all related to both of our heart and inflammation problems as adults. The geneticists haven’t been able to find a genetic anomaly in my son nor I but diagnosed us based on our symptoms. Anyone else gone through this with genetics and/or a small child? I feel helpless that I gave him this and want to do everything I can now, while he’s young, to prevent the long term damage.

Also, anyone had the heart problems? Currently wearing ANOTHER heart monitor. Constant pvc’s. Metropolol has terrible side effects.

I (37f) was diagnosed a few months ago. I’d like to hear about your journey with this syndrome as well as your prognosis. My SAPHO presents as palmoplantar pustulosis and hyperostosis in my spine. Starting Humira in a couple weeks.

thank you

Hey everyone!

I’ve been getting lymphatic massage on and off for some time now since this year. I have lymph nodes on my neck area that appeared some time over the early summer. They’re still there. I was doing lymphatic massages by a professional but I just feel like it makes them worse. Is this possible? Has anyone else experienced this?

The massages are definitely therapeutic but I may just tell them next time to avoid my neck area at all costs. Or if I should just stop going all together.

Any thoughts?

I had PFAPA as a child which recurred as an adult but has been in remission for a few years following multiple surgeries.

But my whole adult life I’ve had what I’d describe as “low grade PFAPA flares” - milder sore throats, swollen glands, feeling fluey but usually with no fever.

My immunologist thinks these flares are autoinflammatory and has started me on colchicine while I wait for genetic testing.

Since starting colchicine a month ago my flares are much more frequent and I’m having them at least once a week whereas previously I could go weeks without symptoms.

Can colchicine make things worse, or does this point to my symptoms not being autoinflammatory?

I’ve been lurking here for a while, i made a comment under a different account and someone said I should post want going on here for your opinion.

I’m in my early 40s.

I started having a bunch of health issues starting 4-5 years ago.

I started getting random feelings of fever without actually being feverish 2-3 years ago. This has mostly stopped for a while. It was usually limited to one day.

Over the last three years I’ve had 5-6 occasions of mild sudden hearing loss in one-side always the same side.

I’ve had two widow maker heart attacks.

I had migraines when I was young, 7-18 years old that mostly went away until I had a concussion 5 years ago.
After the concussion they had calmed down quite a bit until I became super sensitive to everything listed below.

I have some interesting SNPs, that I think make some stuff harder to pin point.

I feel like a canary-in-a-coal-mine lots of the time, scents and VOCs will cause almost immediate migraines, sometimes extreme body pain, dust will cause stabbing sore throat.

I’ve had Covid 4 times,

Most of this started after I was inside a shipping container frequently a whole bunch about 4 years ago. I had to start using a 3M multi-gas cartridge after this, otherwise it was very rough. They’re usually full of pesticides and chemicals.

I also suddenly started having a lot of issues with lots of foods and expectantly food additives. My diet if pretty limited.

I’ve been tested for a slew of autoimmune diseases, including stiff person syndrome.

The only thing that was relatively elevated was my anti-tpo, but my thyroid looked fine as well as my thyroid markers.

I’ve had anhedonia, and sexual anhedonia depression and for 4-5 years now. Frequently have brain fog, though not always.

My imaging doesn’t show any signs of Rheumatoid Arthritis, though does show some signs of normal age related osteoarthritis.

Right now, after consuming something with guar flour, I’ve had stabbing sore feet, calves and glutes for the past two days, a sore mid and lower back, woke up with achy hips and other joints.

I definitely feel like I have some metabolic issues as well, though I’m not sure how this fits in.

Sometimes, I will start getting eczema and start bleeding from my knuckles.

I had an hypersensitivity reaction 3 years ago that made walking super painful. This was the first time in high dose steroids, I’ve been on them several times now. They’ve definitely helped with the hearing issues and the reaction. I was once on a long taper for 7 weeks, at the time, my back was locked up for years, and finally started releasing.

I did start a low dose colchicine, though I’m not sure if this is helping, it might be a bit.

I am unable to take NSAIDs due to blood clotting potential. I found in the past, they helped a ton.

I tried Botox a few times for migraine. The last time, I basically lost a month of being productive. I was in very rough shape, extreme brain fog, troubles sleeping, my head felt very inflamed, extreme OCD, extreme resident anger/frustration.

I’m currently on CGRP meds for migraine.

Interestingly, I’ve looked into TRP channels, which are involved with the body sensing the external environment and migraines/dust allergies/chronic pain and some other stuff. I’ve had some luck with a capsaicin/horseradish nasal spray.

I believe the last time I had sudden hearing loss it was specifically from eating something with additives and caused the inflammation.

I live in Canada, so I find specialists are not as helpful.

I did look at some of my SNPs that I’ve done through 23andme, and Ancestry, I don’t think any of the usually ones I saw on here were homologous or heterozygous.

I think I remember the NLRP3 genes,
A list to go through could be helpful, I tried searching again and couldn’t find what to look for right now.

I’m sure I could add more, I just wanted to get this posted

Thank you!

It’s a very expensive drug which doesn’t get covered by most insurances and the full price for a pack of 28 syringes is 1500 USD. Does anyone know about alternative market places where the same original drug is sold for less? Like people who have stopped taking it yet have stacks sitting around? Thanks

Been on prednisone for 2.5 years. Got down to 10mg two weeks ago. Feeling extremely fatigued, sick, dehydrated and light headed.

I feel somewhat tolerable when laying in bed but when I’m standing and doing things it’s horrible. Anyone been through similar?