What symptoms to you call a flare?

My specialist told me a flare could be minor and hit for short period of time with symptoms as little as an extra ache - or as major as full blown attack on internal organs and last for months.

My GP says a flare is when the bloods results are altered and that there is proven activity of lupus. So when I see my GP with added aches, pains and generally feeling unwell he thinks it's not lupus!

It's all soooooo confusing. I'd be really grateful to read your advise please.

10 Replies

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  • I find when I have a minor flare it can be flu like symptoms and for a few days or a major flare which will last (I have renal involoment). I can feel really unwell even in a mnor flare.

    I dont even bother going the GP anymore as they just pass it off, sometimes as a virus but I just get on with it, if it doesnt pass see your specialist they know what your going through!

  • My Lupus is active at the moment, my hair is thin and my ESR levels and compliment levels are all to pot. Hence the drugs. My Rhuemy says it can take 2 years to get into remission. Within this period I have weeks of wellness, active, happy, house cleaning, social life etc. this is usually followed by periods of fatigue, breathlessness, painful leg muscles, mood swings and the inability to function normally. I usually up my steroids and manage to calm it down over two or three weeks by being a recluse, apart from work. Sometimes it's triggered by the cold virus or a run of night shifts or just a weekend away. Or something mysterious that I don't know about.

    Hope this helps.

    Alison

  • For me the first sign I am flaring is I get a burning red face, then the aches and pains increase. I often get headaches, sore throat, flu-like aches as well as joint/muscle/tendon/nerve pain. Then I lose my 'normal' life and I can't get on and do things. I don't get organ problems thankfully. I think my ESR goes up a little during these flares, but even though I feel awful, the ESR not as high as I think it should be!! I agree it can be confusing!

    These flares are quite short for me, usually around a week, but I flare in response to stress.. sunlight... hormones... so I feel like I'm on a merry-go-round of flares where I'm barely recovering from the last flare before the next one sets in. I'm finally about to take steroids for the first time -I hope they work!!

    I think flares are a little different for everyone - I hope you get some clarity on what's going on for you! All the best xx

  • Very interesting reading these comments. Over the last six months I have had four bouts of illness, just after I saw my consultant least November when my results were fine, and have had to take time off work and assumed they were a virus or chest infection. Now makes me think they were flares as this time when I saw the consultant my results were not so good. Very dificult to know what is wrong when you only get a hospital appointment once every six months. Is it the chicken or the egg? Am I picking up a virus which is causing the lupus to flare or if the lupus is active is that why I am picking up a virus? Confused!!!!!"

  • After a few years of lupus you come to recognise a flare, be it minor or major, on your own regardless of what blood tests or doctors say. All my clinicians have advised that when you're feeling low physically, upping your steroid dose is the best way to go, for about 5 days and you should feel somewhat better. Always remember you have lupus, it doesn't have you and being proactive in your treatment is a big part of the battle. Good luck and feel well

  • Betsieboo, I've had this thing (complete with kidney involvement and blood involvement) for 20 years and still don't know and understand the answer. I think I've been in denial because of the fact that you can feel so awful and have weird symptoms for periods of time but then you go to your nephrologist, they run tests, there's no sign of the Lupus antibody and therefore, they say it's nothing to do with the Lupus. This has caused me great confusion and frustration over the years and probably led me into denial and hence I have run myself ragged and I have now pooped out completely and am rethinking my career as an elementary school teacher. I clearly need help with this question too! I am empathizing, not answering your question... sorry!!!

  • I Think everyone suffers so differently.

    My partner and I went away for the night and the sun caused me to flare. ever since then i have been housebound flat out on the settee for the last month and it seems never ending. I took steroids to overcome the flare, then had to increase them, but then ended up with a bad water infection which was masked by the steroids when then obviously made me more ill.

    during a flare which is either triggered by the sun, over doing it, hormones or stress

    I find i suffer with complete exhaustion, my brain doesn't function, my joints are so painful, I get rashes, it effects my kidneys, my chest hurts to breathe , i get dizzy and so weak that I can hardly manage to walk to the toilet, and the big visible sign to everyone else is that my eyes seem to sink into my head (thats how my partner describes it) and my cheeks turn red / purple and burn and itch.

    I have also noticed that we all suffer the same symptoms in varying degrees, I am stunned by the amount of you who can manage to work. i haven't worked in over 10 years, am managing less and less and feel like i am turning into a recluse. I ca n not remember the last time I woke up feeling well or when I had a day when i didn't have to push myself to do something because i am so tired.

  • I forgot to mention the morning stiffness resulting in having to painkillers everyday just to get out of bed. the spiking temperatures and the nausea and loss of appetite during the flare.

    the range of symptoms are huge!!

  • very intersting reading all your comments, i too have a loss of appetite did't know that was one of the symptoms but then again what symptoms dont we get lolxx im new to this myself im not sure how long a flare last for? I think i've been flaring for over a year thats when it started with a spot on my face then more came then my hair started to fall out headaches clicking ankle and aching shoulders. These sites are very helpful and the people are really lovely hope you sort yourself out!xx

  • I am currently suffering flu like symptoms gp sent anti sickness meds so helping but off work havnt been off for 6 months but itsstill a worry. Gp doagnosed lipus last year after run aroind with rhemi as I also have ffibromyalgia

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