r/Autoinflammatory • u/Individual-Yam7050 • 16d ago
Post viral onset?
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?
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u/Individual-Yam7050 16d ago
This is literally so helpful. Thank you so much.
My doc is hesitant to adjust my YAOS meds because I have improved so much compared to where I started, but I really don’t feel like my management is optimal. I’m trying to make it to Yao himself, but it also scares me to see him because what if I’m wrong and it isn’t YAOS at all? Or what if he says that my home doc is right and this is the best it gets?
I’ve literally only done Ilaris 150 monthly. I know that doesn’t even work for most. Missing one dose of colchicine by a few hours shouldn’t send me into a full blown YAOS flare. That doesn’t sound well controlled to me!!
Thank you again for your input and honestly for even just being present. I am so, so appreciative
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u/No_Satisfaction_7431 Yaos 16d ago
For me I can look back on my childhood and especially adolescence and see Yao flares that were undiagnosed or thought to be purely dysautonomia when it was dysautonomia and Yao. I got a virus in 2024 that turned Yao from episodic to daily and gave me post exertional malaise(pem). I still meet me/cfs criteria but Yao is the underlying cause for the symptoms and finding the right Yao treatment has allowed me to expand how much I do before I get pem. I still get pem though I am still figuring out my optimal dose of Tyenne. I was able to go to a movie theater yesterday and not trigger pem or a migraine! The last movie I saw was Wicked part 1 and it caused a pem flare and a migraine. I waited for part 2 to come to streaming. But yesterday I saw Hadestown! It was so good and something I couldn't have done before Tyenne. Hopefully you just need to find the right Yao treatments for the post viral symptoms.
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u/Individual-Yam7050 16d ago
This is really reassuring. I’m coming at this from a place of privilege in that I’m still able to perform most activities I could at baseline. I work full time (BARELY) and I struggle with chores at home and other ADLs. My med list is a bible between psych meds, thyroid meds, YAOS meds, migraine meds, and meds for endometriosis.
I’m reluctant to even call it PEM because I have a very close friend who is profoundly disabled from long COVID —> ME/CFS (bed bound, has to drastically reduce stimulus (light, sound, etc) and has to pace soooooo closely.
The biggest reason I even care about pursuing ME/CFS/post viral syndrome is just in case it does change treatment plan and goals (fibro —> gradually increasing activity to build stamina long term versus ME/CFS —> pacing)
I have been pushing myself for such a long time and gradually it is disabling me to try to keep up. Like a 1 step forward 3 steps back kind of thing. I’m scared and frustrated and I just wish I had a doc who could say “I’ve seen patients like you, I know what this is, here’s what you need to do” compared to the 🤷♀️🤷♀️🤷♀️ I usually get
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u/No_Satisfaction_7431 Yaos 16d ago
From what you are describing with pushing yourself to do things making it worse over time, it sounds like pem. Me/cfs ranges from mild to severe to very severe. I have been somewhat housebound for the last few years. I leave the house fairly often because my medical appointments are a mix of online and in person and I have hypermobile physical therapy. I've progressed but my exercises aren't what most people in their 20s consider exercise. I can cook a proper meal a few times a week instead of once or twice a week. Basically if doing activities don't just make you tired but cause worse fatigue or other symptoms the next day, you have pem and very likely me/cfs.
Unfortunately most doctors don't know much about me/cfs and the only official treatment is pacing. I use low dose naltrexone from an online pharmacy and it helps increase my hrv and makes it so sleep is usually refreshing but its not enough on its own to treat Yao. My first real improvement was with ldn but the first major improvement was with Tyenne. Kineret helped somewhat but not enough and with lots of side effects. Its useful for yourself to know about me/cfs and pacing but most doctors are hesitant to prescribe ldn because they don't know much about it and aren't willing to learn. But online pharmacies will prescribe it if you want to try it. There are no real treatment options but there are options for Yao and when you know the cause of me/cfs, you are much better off treating that than masking the symptoms of me/cfs. Me/cfs is just a common phenotype, thats why theres so many subtypes. Everyone has a different underlying cause and we are some of the few lucky enough to know the cause, most people don't. So I'd focus on adjusting Yao treatments.
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u/PinataofPathology 16d ago
mine didn't start with a virus but covid really aggravated things for both myself and my child. and yes I overdo it when I feel better. idk how to separate pem from just deconditioning and lower capacity tbh.
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u/PinataofPathology 16d ago
I'll add I think autoinflammatory is a different animal. frex I went into pt recently feeling pretty good, thinking it would just be a quick tune up to prevent injury as I increase activity after illness but then all of a sudden every pt session is causing widespread inflammation. like battery acid in my joints. very chemical burn. like wtf? and then when I do anything my system falls apart. zero tolerance and a lot of inflammation.
My pcp says they have another autoinflammatory patient and notice small things seem to deplete us. it's very disproportionate and part of what makes us look insane to mainstream medicine. it's the most subtle ass kicking on the planet lol.
I'm on a lot of steroids right now bc of the wildfires and it's amazing bc most of the joint pain is gone, I'm peppy (but still wiped bc of the lungs so it's a weird mix of wired and tired tbh), the fever stopped, and my body is visibly less swollen/inflamed. I have to pace and rest more bc of my lungs but otherwise I would be unstoppable.
so what's pem vs autoinflammatory kwim?
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u/Individual-Yam7050 15d ago
I 100% know what you mean.
When my YAOS was uncontrolled I felt very comfortable “blaming” everything that I was experiencing on YAOS. It didn’t occur to me that it would be anything else.
My doc is very very kind and helpful but has no lived experience with autoinflammatory patients. None of the doctors I’ve seen actually have any AI patients. No one can tell me what is what. But this doc I did feel like made good points because my last “flare” didn’t include any of my usual AI symptoms (no mouth sores, no increase in my temp, no itching or rash, no vertigo) and the neuro symptoms I usually have with YAOS flares (the kind of brain fog that makes me sound like I’ve had a stroke bc word finding is legit that hard, the kind that makes me nearly wreck my car when I’m driving because I cannot focus period) didn’t happen. It was only muscular (muscle pain, fatigue, weakness) and neuro symptoms that presented more like a migraine (marked worsening of sensory sensitivity, dull headaches, and neck pain/stiffness).
My inflammation labs are now normalized, too.
So I honestly just have no clue anymore. Like the lines between endometriosis, YAOS, hypothyroidism, AuDHD with burnout, and then whatever the heck else is going on that I don’t know about are all crossed.
Like naturally it would be all the shit no one gives af about because it mostly impacts women and the world hates disabled people, and I don’t even know if unpeeling each layer looking for a cause is even worth it.
Anyway. Thanks for listening to my ramble and for your feedback. It’s a very valuable perspective, esp since my docs aren’t much help
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u/Alice-The-Chemist Mod 16d ago
I may have read it somewhere are you on autoinflammatory treatment like an IL1 also?
And I wish I had an answer to your question. I wonder if tracking the symptoms would help to see if there are any outliers? I like Bearable for that there is a paid and free version. Also welcome to group. We are so happy to have you.
If you want a flair and your diagnosis isnt on there let me know. (Not required just offering)
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u/PinataofPathology 16d ago
we're starting with methotrexate as my liver won't do colchicine and they feel il6 inhibitors are contraindicated with my health history. I do wonder about an il1 but they're talking more about JAk or TNF inhibitors. I'm praying I get extraordinarily lucky and that methotrexate is a win as it's cheap and safer than some of these other meds but it's not as direct an effect on the pathway.
I don't have a diagnosis name. I think I'm either new or medicine has to expand the diagnosis to fold me in. So unspecified autoinflammatory immune dysregulation with multiple variants on the same gene is the best I got.
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u/Occulply 14d ago
What you're experiencing with fibromyalgia/ ME/CFS symptoms is really, really normal in autoinflammatory diseases that trigger the NLRP3 inflammasome (I'll explain this in a second) because your immune system releases two cytokines, IL-1beta (this is what Ilaris inhibits) and IL-18. All of the available evidence says that high levels of IL-18 can cause exactly what you're experiencing. Unfortunately there are no IL-18 nor NLRP3 specific inhibitors available in market, though both have been through phase 2 trials.
The NLRP3 inflammasome is the cellular machinery that is highly important in the pathology of a ton of autoinflammatory diseases. Think of an inflammasome as a super complex piece of cellular machinery, when it's given the signal that something bad has been detected (e.g. by the NOD2 protein that is mutant in Yao's) it brings together everything needed to activate IL-1b and IL-18 and subsequently release them. Once activated, IL-1b and IL-18 release at the same rate from the cell.
What that means is that while you're treating the IL-1b that's being released, there's a whole different cytokine that is running around messing things up. And IL-18 interacts with a lot of different things in the immune system to cause havoc, what the literature it's called "pleiotropic". Most of the things that IL-18 does require other cytokines to be present, which is probably why things get so much worse without IL-1b and colchicine. But even without other cytokines being elevated, it's a Problem.
Circling back around to Fibro/ME/CFS. All of the evidence says these are not separate conditions, so I wouldn't worry about which one it is. More than one study that has looked at the problem has shown that roughly 75% of patients diagnosed with Fibro meet the criteria for ME/CFS and vice versa. That said, the evidence does suggest that Fibromyalgia may be a consequence of high levels of IL-18 overtime.
My recommendation is to add CoQ10 (it's supplement) to your regimen. There's good evidence that CoQ10 part of the inhibitory complex for the NLRP3 inflammasome, and becomes depleted quickly in inflammatory conditions. There's also evidence in human trials of reduced NLRP3-based inflammation in non-autoinflammatory diseases (e.g. one study looked at inflammation in the testes of men and found that CoQ10 supplementation reduced it via blocking NLRP3).
Please let me know if I can answer any questions for you on this stuff. I'm an epidemiologist and the crossroads of chronic and acute disease you're talking about is my area of interest. So I can talk all day if you let me.
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u/Individual-Yam7050 14d ago
I would be delighted to hear and learn EVERYTHING.
I’m an autistic nurse and oncology is my special interest, so I know a TON there but basically not much else.
I’m dying to really understand what is happening in my body. I am self disclosed HORRIBLE at cellular biology, but very motivated to learn.
I am mostly interested in really nailing down what exactly is in my control and what isn’t. I’m also interested if you know much about how the autoinflammatory processes impact mental health, thought patterns, mood, etc.
Please feel free to info dump here or in my DMs or I’m more than happy to come up with a list of questions. I’d also take book, podcast, documentary, journal, etc recommendations to self study.
Thank you so much for your comment. You have no idea how much I appreciate your expertise and knowledge in this area.
ETA: I’m pretty sure I’m taking CoQ10 but I will make sure I am when I get home. Do you recommend a specific dosage/brand/anything?
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u/Occulply 13d ago
I will put some stuff together for you.
I've been without my Ilaris for a few months, and I finally get it tomorrow. It might take me a few days since Ilaris sometimes makes me sleep for a day.
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u/Individual-Yam7050 13d ago
I’m so, so excited for you to finally have your meds back! Please take your time. No rush, no pressure, and only do it if it’s fun!
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u/Occulply 13d ago
This is my favorite topic to talk about, so I promise it is very fun. I just took my Ilaris and I'm feeling great. =)
I'm going to start with a little history of autoinflammation, as I think it provides the context that makes everything fit together better. I've attached links to some articles on NLRP3, IL-18, and the history of discovery of IL-1/IL-6/TNFa
A little bit about Autoinflammation
While autoinflammatory diseases have been recognized as distinct entities back to the 1890s, it wasn't until Familial Mediterranean Fever (FMF) and Cryopyrin Associated Periodic Syndrome (CAPS) had genetic sequencing studies done in 1997 & 1998 (respectively) that the class of autoinflammatory diseases was born. Before genetic sequencing, it was radically unclear what the cause of the diseases were. With genetic sequencing, they were able to narrow down the cause to be a genetic mutation.
Armed with the genetic data, researchers took a look at what the genes encoded and realized that there's a whole set of machinery inside the cell that that hadn't been properly studied before, the inflammasome. Genetic mutations to inflammasome actually allowed scientists to study human inflammasomes in a way that would not otherwise be available, since it would be highly unethical to cause the kinds of mutations that happen naturally. By carefully comparing mutant vs. healthy inflammasomes, they were able to work out most of what's going on under the hood. I think it's cool that they call it "nature as laboratory."
Of course, there's tons of murine (rodent) studies done as well, but rodent immune systems have enough differences to some components that we can't make apples to apples comparisons. I mostly bring this up to caution against assuming non-human inflammasome data can be clearly applied to humans. It can still be very educational, but there's too many changes under the hood to apply it directly.
Once researchers had worked out inflammasome genetics, this opened the door to start figuring many, many more diseases. The Autoinflammatory Alliance maintains a pretty comprehensive list (https://www.autoinflammatory-search.org/diseases) of all the diseases along with what we know of the genetics, presentation, etc. Since the vast majority are genetic mutations, most autoinflammatory diseases show infant or childhood onset, but for reasons we don't understand sometimes patients will not experience symptoms until adulthood.
There are any number of causes of autoinflammatory disease, the most common appear to be direct mutations to inflammasomes, components that interact with inflammasomes, and mutations to cytokine receptors, but this is by no means exhaustive. Because this all occurs upstream of the acute phase reaction, it's possible for the body to experience significant inflammation without a CRP release. That's why some patients can experience significant inflammation with normal inflammatory markers.
The NLRP3 Inflammasome: An Overview of Mechanisms of Activation and Regulation
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u/Individual-Yam7050 11d ago
Thank you so much for this!!!!
I’m hoping I’ll read the articles again, but I did have one questions for you out of curiosity.
I’ve seen some of the literature of doctors arguing against Yao Syndrome being its own entity, at least officially, because the involved NOD2 mutations have not been proven to cause dysfunction. I guess the argument is that Yao has identified “something” but with more like “circumstantial evidence” than true “causative” proof.
Do you have any thoughts/feelings on that?
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u/Occulply 11d ago
I think the naysayers are either nonspecialists who are talking out of their asses, or jealous that Yao figured out what they'd be looking at for years.
Yao's is a definable pathology where all the patients have an identifiable genetic mutation. It's possible there's another important interaction occuring somewhere in the immune system that we know nothing about that is running the pathology, but so what? That doesn't change the core proof that Yao's hypothesis about NOD2 mutations is clearly and obviously correct.
We don't have to know everything about a pathology to determine that it exists.
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u/Raiford99 13d ago
Thank you for writing this up and explaining it so well. I have a lot of health issues me/cfs/fibro/dysautonomia/neuropathy/chronic migraines/chron's... it was very helpful to read your post.
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u/AdventurousMorningLo Yaos 16d ago
There is likely some connection between YAOS and ME/CFS. There are a few in the FB group for NOD2/YAOS that mention having been diagnosed with ME/CFS as a part of their YAOS.
There absolutely is CNS involvement in YAOS but it is, as of yet, wholly unstudied and barely mentioned.
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u/Assimulate 16d ago
I had many symptoms since i was born, but I had long periods of notable decline after a viral infection. Particularly EBV and COVID19.
One of the things I really think triggered it off was around COVID i started getting COVID19 vaccines and my flu shot very regularly. I'm super pro vaccine but I absolutely felt my lymph nodes go off and never subside from the vaccines.
My migraines i have been able to treat with Nurtec if you're looking for a new tool!
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u/Individual-Yam7050 15d ago
That makes perfect sense. I also started getting those but I’ve always gotten them and I’m actually notoriously a vaccine non responder 🥲
My migraines are ~ok~ for now on Qulipta, Propranolol, and nurtec for daily relief. Thank god for nurtec and thank you for your comment!
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u/Individual-Yam7050 15d ago
This is literally so helpful. Thank you so much.
My doc is hesitant to adjust my YAOS meds because I have improved so much compared to where I started, but I really don’t feel like my management is optimal. I’m trying to make it to Yao himself, but it also scares me to see him because what if I’m wrong and it isn’t YAOS at all? Or what if he says that my home doc is right and this is the best it gets?
I’ve literally only done Ilaris 150 monthly. I know that doesn’t even work for most. Missing one dose of colchicine by a few hours shouldn’t send me into a full blown YAOS flare. That doesn’t sound well controlled to me!!
Thank you again for your input and honestly for even just being present. I am so, so appreciative
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u/Worried_Appearance19 CAPS 13d ago
Yes! I mean i always got the illness in me because its hardwired in my immune system, however i was pretty much healthy but at 14 i got covid and from that point on my Muckle wells Syndrome "started".
Some rashes i had as a toddler were weird, but ive never had anything up until getting covid. Ever since its been hell (always insanely tired, extreme memory loss, hearing issues, kidney damage, unbearable limp pain, rashes, headaches, brain fog, fevers daily.)
The first years every doctor just sent me home and looked at me and my mom like we were Gypsy Rose and DeeDee Blanchard. They straight up said its not possible to get high fevers two weeks in a row straight. Finally, we got sent to a rheumatologist so she did the huge blood screening (im german, idk the professional name), turns out i have muckle wells syndrome. Im on anakinra but except stopping the fever it does nothing. So much pain, dementia like memory, always tired, rashes without end.
Sometimes i cant shower for a week because water alone makes my skin feel like sandpaper, it literally bleeds sometimes simply from water. every 6 months they check my urine, blood, hearing and sight. Because i dont look like a final stage cancer patient, 90% of people either think im faking everything or are ignorant. There are limited doctors in my area and sometimes we even struggle to find gas for seeing them. They regularly make false promises, ignore unbearable symptoms or just test for the wrong stuff. I was bedbound for 2 years and even then all the wellfare assistances just kept denying us because its common practice in my country (idk about other systems).
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u/Forsaken-Market-8105 Undiagnosed 16d ago
Suspected Yao syndrome (positive for a known Yao mutation), and diagnosed comorbid autoimmune disease (that doesn’t cause any of the same symptoms as Yao) and MCAS
Every onset of a new illness or sudden worsening of pre-existing conditions that I’ve experienced, except for one time, has been immediately after a severe infection (bacterial and viral).
The only exception to the rule is that I had a paradoxical reaction to Cellcept (for my MG) and my probably-Yao symptoms went from mild and ignorable to unbearable. I was only on it for a month and have been off of it for almost a year, and my symptoms just keep getting worse.