I always wonder what people actually mean that they are having a ‘flare’ and they know they are having a flare?
I feel ill all the time pretty much and it’s my normal.. the fatigue and my leg discomfort and feeling hot/clammy in the face being the worst symptoms on the daily. Obviously some days/weeks it’s worse but never goes. So I wonder when I would know it’s Lupus/APS normal and when it’s a flare?
I also have absolutely no idea which illness causes my symptoms 🤷🏻♀️ hence why I don’t talk to people in my life about how I feel as I don’t really understand or have the language for it myself.
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Bobbydoodle
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A flare is when there is a sudden increase in disease activity. This usually coincides with lab abnormalities as well eg high dsDNA, low complement, low cell counts, high ESR/CRP, etc. Like you, my stuff seems to be active all the time so we are not controlled and thus, the word flare doesn’t carry as much weight with us. Before diagnosis, I likely had lupus a long time. After receiving a flu vaccine, I developed pericarditis and didn’t feel well for a about 2-4 weeks until I was given steroids. I’d call that a flare. Now, I’d call a flare when my lymph nodes swell really badly, rashes everywhere and I get joint pains and tendinitis that make it hard to walk or climb stairs. This sometimes happens (to a milder extent) after getting IVIG so I take low dose prednisone around this time for a week to keep symptoms at bay.
Those who are well controlled can distinguish quite quickly when they are about to flare. Most of the time flares are quelled with steroids which work quite well. When you are having too many flares, this can be used to distinguish how controlled your disease is and if you need additional medications for control. The degree of severity when you flare differs from person to person. Hope this helps clarify things a bit.
Yes, flares can be very serious but with me I had one : moderate and short lasting last week about an hour before bedtime, before my nightly1G MMF etc.
Symptoms: feverishness, joint stiffness, facial red flushes and some red rashes getting angry so had to apply Protopic on them.
Next morning better!
This lupus disease is highly unpredictable particularly with my skin rashes. There are so many symptoms with AI disease like lupus and even sudden stress, uv light etc can bring about a flare in sufferers!🙀
It’s about those T lymphocytes attacking different people in different ways and in different degrees.🙀
Very difficult disease to manage due to myriad symptoms, flare variability and unpredictable serious resurgences!😥😩
Jmiller623 what do you consider "too many flares". I had 9 flares last year where I took a round of steroids. Would this be too many flares or average or low?
Probably depends on the person, how severe flares are and if they respond to treatment. I’d imagine someone with 2-3 serious flares a year might be treated the same as someone with monthly mild-moderate flares. I think it all has to do with how much flares affect organs and functionality which requires escalation in therapy.
Thank you for sharing your exploration of what a flare means .... some really good information in the replies too. I guess, as well it means something slightly different to everyone, but with enough in common to know that you maybe "feel worse" or the condition's activity is a bit higher. I was affected by you saying that it can be difficult to find words or feel reluctant to say how it affects you ... don't let that stop you trying. The forum here is magical in letting others express things eloquently and simply offering support.
Do you get increased level of symptoms at any point? For me fatigue is "normal" and when I get malaise/chills/feeling like I have a flu/don't have strength to even sit in a chair I call that I flare and have to take a round of prednisone to get back to my baseline of just fatigued.
Thank you that’s really helpful. I am glad I asked as I am making notes and gaining a language for my own understanding and for communication with others 🙂
Hi Bobby doodle 🤗 What a great discussion were having this morning!! I agree with others that a flare is literally a flare up of symptoms.
There's the usual stuff that's everyday such as aches, pains, fatigue etc that we manage on a daily basis. A flare is the increase in those symptoms.
I am unfortunately fortunate in that I'm diagnosed with Subacute Cutaneous Lupus Erythematosus (SCLE) so it's quite easy to tell when I'm flaring...my skin becomes inflamed n then it cracks..and general rashes increase..as well as feeling TOTALLY exhausted. My mood plummets..I lose my appetite..my sleep becomes disturbed too.
Now I'm on the right mix of meds for me..however I still have what I call mini flares..I can see inflammation n feel it under my skin but it doesn't always crack now thankfully.
Then there's the reasons for flaring to take into consideration too. For instance I'm extremely photosensitive n I have to be very mindful of sunlight n florescent indoor lighting too. If I've had to be in the sunshine for too long..I start to feel ill almost immediately..I feel sick..headache comes n I get very shaky!! I also can't think straight!! This usually goes after a couple of hours when I back safely in my very shady home 😹🌈😽😽xx
I agree it's so confusing. I'm very lucky as my meds on the whole controlled my disease pretty well( hydroxychloquine )I get what I call little episodes where I come over with feeling sick, headache, low mood, shivers- learnt tgat if I just stop, go to bed then most of the time I'm fine the next day.
I've reacted to every vaccine, which has sent me into a flare. A couple of weeks and recently covid but I can tell I'm on the mend.
With a big flare, I'm exhausted, struggle to just do daily things, walk about, shower, wash hair etc I get molar rash on my face. My joints swell and ache and my eyes, nostrils and throat , ears are very dry. I feel tightness in my chest and usually have a water infection or cystitis. And I can't stand noise, everything is loud.
That's interesting Bonny 🤗I get noise sensitivity too!! Have never thought of it as indicative of a flare but I'm gonna keep a closer eye on that particular symptom now..so thank you for sharing 🌈😽😽xx
I’m sorry you feel so unwell. For myself I know when my lupus has flared as I have pain in every bit of my body. It seems to attack my throat and ears too with pain shooting right up to the top of my head. Normally it’s just the achey joints and sweating at the slightest exertion that is a problem. Recently the fatigue has been awful and I am a bit depressed. Not sure which is the chicken and which is the egg but I know it’s not fun! Hope you feel a bit better soon. Just keep pestering the doctor or rheumatologist if you have one as there are things that can help you.
Hi Bobby . I am an APS triple positive person since 2009 and so far no Lupus that we know of medically . I have Flares that can be of numbness and tingling all over body OR just one limb or part of a limb. I can also turn red . On all limbs , or just one or two it can be face , really just about anywhere But one can just watch me turn red i always told my APS nurse about it for years we worked together with the APS and finally one day in the office I had a full body flare and she was watching it happened as what I had been telling her for years ,she finally witnessed herself . The redness or tingling can be both or just one of them and fatigue can be a factor also or by it self . Bobby i am an older man in late 60's now things are more pronounced with age and disease getting worse { or maybe just the age , Ha don't know never been old before Ha a tad of humor helps . } But i can flare in many ways So hope this is of help and here if any questions you may have . Best to you . and Welcome to the site . I t is hard to speak to some people about our issues as some of our issues can't be seen and this can make it hard. As I always say Hugs
Do you turn red ?? Another thing i have is severe muscle spasms from the APS legs - arms - back -chest - even facial muscle 's . I am on two types of muscle relaxers that do well and every other month go to a clinic for them and I get up to 36 injections for them in the upper traps and then down back to the lower lumbar area if we don't run out of the med first . also my Occipital , them I can get every month as they swell and won't relax causing dizziness from pressure and can't tip head back or even turn my head to the left . just some other things I get from the gift that just keeps om giving . Hmmm . hugs
The APS is what we attribute it to the cause . But i have over 30 diagnosis ed medical issues , many I have had all my life . the APS was found in 2009 BUT i could of had it they figure 2 to 3 years before but , They knew next to nothing of APS when i came into the picture at both hospitals and it was about a year after they found i was found to be a triple positive as i worked my way up the specialist doctor list . So much was unexplained till the triple dia. and because i am on warfarin Sulfate i have to test my INR every three days and that is because i have never been therapeutic since day one and have huge INR swings . my INR range is set at 2.5 to 3.5 but last month I was in the mid 6 's and we have been trying to get it to drop BUT we have to be careful I don't plumbed because if i drop below 2.0 i have to go on Enoxaparin injections twice a day most times if not once a day till my INR recovers and is back in mid range of 3.0 which it is now but we still have to test every three days for the rest of my life. one of my specialist doc's put on my medical problem list was " A medically Complex Patient " and it is the truth . Hugs
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