What is a flare?
July 28, 2021 12:19 PM Subscribe
Autoimmune diseases are described as "flaring". What exactly is that, and how is it measured?
New to this. Have some questions. Thanks in advance.
I understand that a flare is an increase in disease activity and/or symptoms. I'm trying to identify whether what I experience are flares, or just -- disease. I have days, mostly single but sometimes a few in a row, where I feel like I'm on fumes, empty, well past what I'd say is "tired" because it seems like there's no way to relieve it or re-energize with the usual sleep, food, or caffeine. I just ... lower my expectations and wait them out.
Are these flares? Or are flares a months-long change in illness? How do you (or doc) decide what is a flare, and what is just the new normal, and what/how/when to treat? This seems like a fuzzy area in everything I've read thus far.
Second, I've just been started a month ago on plaquenil, which I understand takes some time to work. My inflammatory markers were up -- CRP 20, sed rate 90. They'd been high (but not 90, which seems kinda high) for a while, like year+. At what point should I expect treatment, or more treatment? Are these markers, treatment targets themselves?
New to this. Have some questions. Thanks in advance.
I understand that a flare is an increase in disease activity and/or symptoms. I'm trying to identify whether what I experience are flares, or just -- disease. I have days, mostly single but sometimes a few in a row, where I feel like I'm on fumes, empty, well past what I'd say is "tired" because it seems like there's no way to relieve it or re-energize with the usual sleep, food, or caffeine. I just ... lower my expectations and wait them out.
Are these flares? Or are flares a months-long change in illness? How do you (or doc) decide what is a flare, and what is just the new normal, and what/how/when to treat? This seems like a fuzzy area in everything I've read thus far.
Second, I've just been started a month ago on plaquenil, which I understand takes some time to work. My inflammatory markers were up -- CRP 20, sed rate 90. They'd been high (but not 90, which seems kinda high) for a while, like year+. At what point should I expect treatment, or more treatment? Are these markers, treatment targets themselves?
I have an autoimmune disease; still working out the diagnosis but my doctor suspects rheumatoid arthritis. My new normal baseline is much lower-energy than previously, but I'm able to do household tasks and run errands. Except sometimes I have flares.
You're right that it's kind of fuzzy and subjective. Like restless_nomad, I call it a "flare" when something happens that triggers symptoms that eventually subside if I take it easy. Like, a couple of weeks ago I had a really stressful day (driving an hour to a job interview in a borrowed car in heavy traffic) and the next day I was in a flare, meaning my joints and back were much more achy than before the stress, and I was really fatigued. The worst of it lasted 3 days, and I would say it took me about 6 days of not doing much to get back to baseline.
I feel like basically one day of stress/heavy exercise buys me one week of flare time, meaning a couple of difficult weeks buys me two months of symptoms. Everyone's different though, so this might not be your experience.
posted by Nibbly Fang at 1:32 PM on July 28, 2021 [3 favorites]
You're right that it's kind of fuzzy and subjective. Like restless_nomad, I call it a "flare" when something happens that triggers symptoms that eventually subside if I take it easy. Like, a couple of weeks ago I had a really stressful day (driving an hour to a job interview in a borrowed car in heavy traffic) and the next day I was in a flare, meaning my joints and back were much more achy than before the stress, and I was really fatigued. The worst of it lasted 3 days, and I would say it took me about 6 days of not doing much to get back to baseline.
I feel like basically one day of stress/heavy exercise buys me one week of flare time, meaning a couple of difficult weeks buys me two months of symptoms. Everyone's different though, so this might not be your experience.
posted by Nibbly Fang at 1:32 PM on July 28, 2021 [3 favorites]
Flares for me (two diagnosed autoimmune conditions) are acute increases in symptoms lasting 2-3 days usually, but sometimes longer. Part of the short course is due to me starting a corticosteroid if I feel worse more than 2 days in a row.
For some it feels like the flu. For me, it is usually profound fatigue, muscle weakness, and increased joint pain. Sometimes I need to sleep 13-15 hours to get through it. Sometimes it means I have an increase in purpura that makes it painful to walk.
It can take some time to tease out. As restless_nomad said, I determine it was a flare if I return to baseline. If I don't return, in my case that means it's time for an infusion of chemo-like medication.
Interestingly, a flare of symptoms doesn't necessarily correlate to a spike in labs. I've been to my rheumy while in the middle of a flare (once conditions were stabilized) and the labs didn't reflect that I felt so much worse.
I am on Plaquenil and I believe I started noticing improvement around month 4. My rheumy did not tell me to get my eyes checked, so in case your doc didn't either, you should get your eyes checked every year or two while taking Plaquenil.
But honestly, what has helped the most is working from home and the lockdown making it possible to do most of what I need without going out and about.
(I am apparently triggered by corporate environments, walking around places where people are in their variety of scents, temperature changes, being overly cold in any office environment, forced socializing, fluorescent lighting, etc. My health has improved so much since I stopped having to go into an office.)
posted by crunchy potato at 5:14 PM on July 28, 2021 [4 favorites]
For some it feels like the flu. For me, it is usually profound fatigue, muscle weakness, and increased joint pain. Sometimes I need to sleep 13-15 hours to get through it. Sometimes it means I have an increase in purpura that makes it painful to walk.
It can take some time to tease out. As restless_nomad said, I determine it was a flare if I return to baseline. If I don't return, in my case that means it's time for an infusion of chemo-like medication.
Interestingly, a flare of symptoms doesn't necessarily correlate to a spike in labs. I've been to my rheumy while in the middle of a flare (once conditions were stabilized) and the labs didn't reflect that I felt so much worse.
I am on Plaquenil and I believe I started noticing improvement around month 4. My rheumy did not tell me to get my eyes checked, so in case your doc didn't either, you should get your eyes checked every year or two while taking Plaquenil.
But honestly, what has helped the most is working from home and the lockdown making it possible to do most of what I need without going out and about.
(I am apparently triggered by corporate environments, walking around places where people are in their variety of scents, temperature changes, being overly cold in any office environment, forced socializing, fluorescent lighting, etc. My health has improved so much since I stopped having to go into an office.)
posted by crunchy potato at 5:14 PM on July 28, 2021 [4 favorites]
I have fibromyalgia, which is not an inflammatory/autoimmune (though inflammation makes it worse) disease but which does have flares and I have honestly been trying to figure this out myself. For what it's worth, my doctor says there's no hard-and-fast rule.
I have figured out for myself that I have Big Flares and Little Flares. The Big Flares feel acute, for lack of a better term. I usually wake up feeling sore/achy/exhausted, and I just know I'm not going to get anything done that day. I can usually trace them back to something specific, and they tend to be mercifully short (under 48 hours) if I let myself rest. Big Flares suck but they're easy to explain and easy to understand.
Little Flares are more the fuzzy area you're talking about. Like this week, I'm just more tired and a bit more sore for no discernable reason. It's not incapacitating, but it's also frustrating because I don't know why and I don't know how long it will last. Sometimes doing active things helps, sometimes it doesn't.
Since I was diagnosed, I have fewer of the Big Flares but more of the Little Flares. I like to think that this is because I've started to understand more about what makes my fibro worse and so can prevent some of the worst symptoms. But the irony is that, in the absence of as many Big Flares, it's harder for me to remember to do all the things I need to do to feel better (avoid dietary things that cause inflammation, get some exercise but not too much, stretch 2x/day, get plenty of sleep, take my supplements, etc.). I'm still working out the balance.
posted by lunasol at 5:55 PM on July 28, 2021 [2 favorites]
I have figured out for myself that I have Big Flares and Little Flares. The Big Flares feel acute, for lack of a better term. I usually wake up feeling sore/achy/exhausted, and I just know I'm not going to get anything done that day. I can usually trace them back to something specific, and they tend to be mercifully short (under 48 hours) if I let myself rest. Big Flares suck but they're easy to explain and easy to understand.
Little Flares are more the fuzzy area you're talking about. Like this week, I'm just more tired and a bit more sore for no discernable reason. It's not incapacitating, but it's also frustrating because I don't know why and I don't know how long it will last. Sometimes doing active things helps, sometimes it doesn't.
Since I was diagnosed, I have fewer of the Big Flares but more of the Little Flares. I like to think that this is because I've started to understand more about what makes my fibro worse and so can prevent some of the worst symptoms. But the irony is that, in the absence of as many Big Flares, it's harder for me to remember to do all the things I need to do to feel better (avoid dietary things that cause inflammation, get some exercise but not too much, stretch 2x/day, get plenty of sleep, take my supplements, etc.). I'm still working out the balance.
posted by lunasol at 5:55 PM on July 28, 2021 [2 favorites]
I have dermatomyositis, which is an autoimmune condition almost nobody has heard of - it's "an uncommon inflammatory disease marked by muscle weakness and a distinctive skin rash" (except when it isn't, as in my case. You can have the skin rash without any muscle weakness, and that is the much rarer version that I have).
For me, a flare is pretty obvious because my "distinctive skin rash", which is never present if I get my IVIG treatments on schedule, shows up with an angry red itchy vengeance. I can usually tame it down with some of the extra stuff my dermatologist describes - random steroid creams, usually.
Basically, anything I can tame down with either time or some form of medication, I count as a flare. Anything my meds don't affect or that goes on more than a couple of days/a week I count as something I need to address with my doctors.
Regarding plaquenil - I've been on it for over 10 years and have never had a disease marker change or noticed it having any effect on my disease whatsoever. I basically stopped taking it in 2020, which was kind of dumb, but I was still getting all my routine (every 8 weeks or so) blood work done in 2020 and nothing changed. Which isn't to say that plaquenil is useless, just that its actual effects on your body may be subclinical and you may not notice its impact on how you feel or how you go about your day-to-day. I've started taking it again, now that my brain is dealing a bit better with pandemic matters; I just tend to think of it more as a prophylactic than a treatment.
posted by invincible summer at 6:52 AM on July 29, 2021 [1 favorite]
For me, a flare is pretty obvious because my "distinctive skin rash", which is never present if I get my IVIG treatments on schedule, shows up with an angry red itchy vengeance. I can usually tame it down with some of the extra stuff my dermatologist describes - random steroid creams, usually.
Basically, anything I can tame down with either time or some form of medication, I count as a flare. Anything my meds don't affect or that goes on more than a couple of days/a week I count as something I need to address with my doctors.
Regarding plaquenil - I've been on it for over 10 years and have never had a disease marker change or noticed it having any effect on my disease whatsoever. I basically stopped taking it in 2020, which was kind of dumb, but I was still getting all my routine (every 8 weeks or so) blood work done in 2020 and nothing changed. Which isn't to say that plaquenil is useless, just that its actual effects on your body may be subclinical and you may not notice its impact on how you feel or how you go about your day-to-day. I've started taking it again, now that my brain is dealing a bit better with pandemic matters; I just tend to think of it more as a prophylactic than a treatment.
posted by invincible summer at 6:52 AM on July 29, 2021 [1 favorite]
I have interstitial cystitis and my flares are generally about a month long. I start feeling as though I have a UTI, get tested to rule that out, and then start taking medication for the inflammation/symptoms. While I am trying to calm things down, I am particularly careful about my diet and I go out of my way to eliminate as many other potential triggers (such as stress) as possible.
posted by ASlackerPestersMums at 10:40 AM on July 29, 2021 [1 favorite]
posted by ASlackerPestersMums at 10:40 AM on July 29, 2021 [1 favorite]
My answer is specific to my Crohn's disease and my gastroenterologist's treatment philosophy, so you may want to talk with your physician.
The treatment goal for my autoimmune disease is remission through medication. When the treatment is working, as demonstrated through symptom control and good lab work results, we count that as remission (even though, if a colonoscopy were to be done right then, there could be signs of disease).
When I start having symptoms (unusual fatigue would be considered a symptom and my doctor would absolutely want to know) and/or lab work shows inflammation, my gastroenterologist modifies the dosage and type of medication. The protocol, in my case, is to not let issues go on untreated, because moderate issues can escalate to severe (harder to treat).
posted by apartment dweller at 12:21 PM on July 29, 2021 [1 favorite]
The treatment goal for my autoimmune disease is remission through medication. When the treatment is working, as demonstrated through symptom control and good lab work results, we count that as remission (even though, if a colonoscopy were to be done right then, there could be signs of disease).
When I start having symptoms (unusual fatigue would be considered a symptom and my doctor would absolutely want to know) and/or lab work shows inflammation, my gastroenterologist modifies the dosage and type of medication. The protocol, in my case, is to not let issues go on untreated, because moderate issues can escalate to severe (harder to treat).
posted by apartment dweller at 12:21 PM on July 29, 2021 [1 favorite]
Adding: in terms of time, what I count as a flare often starts as an, oh, maybe it was something I ate, this will pass kind of experience. But that is almost never the case. The flare doesn't pass, and weeks and months can go by before things are brought under control again. I had a 6-month flare in 2019 and am in a 2-months-and-counting flare now (less severe because prednisone has been added as an additional temporary medicine: it tamps down some symptoms, but adds not so fun side effects).
I too have had the experience where I have been on medications that stopped working at the regular dose, and I had to be prescribed more frequent doses--and also some biologics that completely stopped working for me.
posted by apartment dweller at 1:13 PM on July 29, 2021 [1 favorite]
I too have had the experience where I have been on medications that stopped working at the regular dose, and I had to be prescribed more frequent doses--and also some biologics that completely stopped working for me.
posted by apartment dweller at 1:13 PM on July 29, 2021 [1 favorite]
A PCOS flare I guess would be if a cyst gets enlarged and/or symptoms increase, e.g., periods get irregularly close together and lead to a month of bleeding, periods get irregularly far apart, other hormonal symptoms, etc. I've had golf ball–size cysts with almost no symptoms, so while that might be a flare, I wouldn't necessarily know it unless it became symptomatic.
A flare of confluent and reticulated papillomatosis would be when skin in certain areas (face, flanks) gets grainy/flaky (hyperkeratosis), darkens (increased melanin production), and refuses to heal. The solution is to take a course of antibiotics, which can cause other issues, so sometimes I'll put up with it for a while until it gets too annoying or I need to take antibiotics for something else.
posted by limeonaire at 3:00 PM on July 29, 2021 [1 favorite]
A flare of confluent and reticulated papillomatosis would be when skin in certain areas (face, flanks) gets grainy/flaky (hyperkeratosis), darkens (increased melanin production), and refuses to heal. The solution is to take a course of antibiotics, which can cause other issues, so sometimes I'll put up with it for a while until it gets too annoying or I need to take antibiotics for something else.
posted by limeonaire at 3:00 PM on July 29, 2021 [1 favorite]
This thread is closed to new comments.
As for the treatment targets, that's a question for your doctor. My rheumatologist (the really good one) would tell me how long he expected it would take to see changes and what the steps would be if there were none or if they weren't sufficient. He also told me that often meds stop being effective - particularly biologics, which are generally a later step then Plaquenil, in my understanding - and I'd have to rotate. I saw him every three months to check in on these things.
If you're not seeing a dedicated rheumatologist, it's worth spending some time trying to find one. It may not be possible - there's a shortage. But they're the people to answer these questions and have the experience with autoimmune-specific situations.
posted by restless_nomad at 1:12 PM on July 28, 2021 [4 favorites]