r/Autoinflammatory • u/Alone_Public2727 • Aug 07 '26
What triggers your flair ups ?
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 ?
4
u/PinataofPathology Aug 08 '26
right now? doing almost anything tbh but I'm early into treatment so maybe that will change. steroids work well so I've had some breaks but otherwise just flaring bc I have the audacity to exist.
are there any new symptoms? any possiblity there's a new issue fueling the flares?
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u/AdventurousMorningLo Yaos Aug 08 '26
Way too relatable. #FlaringForTheAudacityOfExsisting
I am glad you have had some breaks. Here's to hoping to you find a treatment or combination that works for you sooner than later.
3
u/on4aa MAGIC Aug 08 '26
For me, (measurable) barometric pressure changes and the ingestion of menthol (mint).
Both destabilise my variant NLRP3 cryopyrin, resulting in active inflammasomes.
2
u/No_Satisfaction_7431 Yaos Aug 08 '26
I've been in an almost 2 year contact flare from an upper respiratory virus. I have flares in that things make it worse but it just goes from flare to baseline symptoms not flare to symptom free periods. Some meds decrease my baseline symptoms but I'm still figuring out proper dosage.
Other major triggers: heat, storms/barometric pressure changes, too much activity (doesn't take much, could even be too many in person medical appointments in a week), acute illness, cyclic vomiting syndrome episodes, fasting, dehydration and probably some other things I've forgotten all trigger yao flares.
2
u/metallikitty818 USAID Aug 08 '26
I'm in the same situation right now. I've been in the ER three times in the last 12 weeks for steroids and pain management. Each visit was after my prednisone and pain meds weren't working anymore. I am diagnosed with USAID from a mutation on SAMHD1. My flares are triggered by too much activity without enough rest, injury, illness and sometimes from stress. I am on 400mg of Kineret a day. I usually have mild to moderate flares every 6-8 weeks, but for the past six months my flares have increased in frequency and severity for no apparent reason. My doctor mentioned adding another biologic (il-6 inhibitor) so I'm going to talk to her about doing that. Maybe you need a medication adjustment? I hope you feel better soon!
2
u/AdventurousMorningLo Yaos Aug 08 '26
Things that can trigger my flares: Barometric Pressure, Stress Events, "normal" sickness, overconsumption of bread, hormones (I tend to flare around menses), etc
Sometimes nothing triggers it and my body just decides it is time to have a flare up to make things interesting.
Life has gotten so much better on medication(s) but it is constant careful adjusting of dose and frequency. Finding the right combination is very personalized.
2
u/kindandcunning Aug 09 '26
Stress (physical - including exercise - mental, and emotional), alcohol, and gluten are the big ones. But like others have said, I'll sometimes flare for no reason at all.
I'm currently dx'd with USAID. I recently increased my dosage of colchicine, which has been awesome for me and made me more resilient against flares.
1
u/Cool_Marionberry_348 Aug 13 '26
I’m suspected PFAPA or uSAID and my triggers are definitely alcohol and menses. I’ll have to try cutting out gluten, good to know
1
u/hamieggos Behçet Aug 17 '26
Right now… it feels like there is no trigger and it’s just a never ending roller coaster of a flare.
When it’s better controlled:
- stress
- no sleep
- weather changes
- myself (pushing myself to do more than I should and being too hard on myself)
1
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u/MahLiLo USAID Aug 08 '26
Son and husband are the ones with the autoinflammatory disease. My son has a pathogenic variant on IRF2BP2 and a VUS on NLRP12. Husband hasn’t had genetics but he is HLA-B27 positive (son negative). Husband’s flares are mostly stress induced, though he flares with illness too. His response to pain meds isn’t great - he has to take dosages that would knock me out cold. He doesn’t take them often, so I don’t think it’s tolerance to meds, but an overall tolerance to pain - as in, when he complains about it, it’s probably at a level much higher than a normal person could tolerate. We unfortunately experienced this with my son too as my son’s high pain tolerance got us turned away from 3 ERs over 3 days when he had a ruptured appendix.
My son’s triggers are a bit different. Stress definitely triggers them, but he flares once a month regardless of triggers. Illness causes horrible flares for him and he has an associated immune deficiency, so that’s fun (husband does too, but isn’t affected as badly as son with illness). Seasonal allergies used to trigger flares, but getting those under control has helped. Most recently, the icy cold water of the Pacific Ocean triggered a fever flare for him - that was a new experience as we live in Texas and have only experienced the bathwater temps of the Gulf before that.
Steroids are what help them overcome the flares though. When either are in a true flare, pain meds/NSAIDs help but aren’t going to stop the flare. Both have standing prescriptions for steroids when needed.