What is Flare Up ?

[Mozart12]

Just to get this clear in my head as my learning young......what is classed as flare up ???!

.....and what is supposed to happen on a flare up please ????

.....how can you be sure your haveing a flare ??????

Thank you 🙄

[Hidden]

Hi Mozart12,

There are many postings on “flare(s)” and dozens of opinions+comments eg just type “flare” in the search option, see top right of this website and you should get loads of results/opinions/comments etc.

Here are my views:

With lupus a flare/flare up happens when your normally well controlled/managed lupus symptoms and signs come back because of different reasons, triggers, causes...

Lupus as you probably know is a very complex autoimmune, inflammatory disease which is DIFFICULT to manage and control with numerous symptoms eg feverishness, joint, nerve and muscular pains, rashes, skin problems, itchiness, hair loss, eyesight problems, light sensitivity, other organ involvement etc etc...lupus also relapses/remits and this makes it difficult to treat/diagnose/manage...for us and clinicians.

Advice:medication reviews are very important both to manage the disease and get on top of side effects.

Hence all lupus sufferers must have regular checkups with lupus specialist doctors.

[Mozart12 in reply to Hidden]

Thank you so much 😊

[eekt]

Hi Mozart, there are a couple of forms some rheumatologists use to calculate whether it's a flare (here's one: sledai-2k.com/sledai2k.pdf)... the SLEDAI only accounts for NEW symptoms eg you could be losing a lot more hair, have pain in more joints, and have a growing rash but it wouldn't show in SLEDAI... SLEDAI points (some say 4, huh?) would prompt a med review

Every doctor might have a different view of what defines a flare, which is why - as Alexa says - regular reviews by rheumy are important. The dsDNA blood test result should be checked every time, as it's an indicator of disease activity. Other bloods will show inflammation.

When it comes down to it, learning to know your own early signs of a flare is what you need to do, plus use dipsticks if you've had blood/protein in urine before (early kidney trouble is pain-free)...then if something's kicking off, contact rheumy nurse/rheumy/lupus clinic...not everyone has a direct contact, but a message with the secretary will do

Some symptoms eg sudden hearing loss, vision disturbance are best seen at A&E

Keep posting and let us know how you go! xxx

[Mozart12 in reply to eekt]

Thank you....all very helpful😊

[eekt in reply to Mozart12]

All the best...my early flare sign is my belly going up like a pregnancy bump...within a few hours LOL! So it's straightforward for me! xxx

[Ianrussell69]

My personal opinion is it’s different for each individual for me I start with painful fingers then I get bad fatigue then it gets my shoulder knee legs ending with jelly legs I’m very lucky because some people end up in bed or hospital it can last one week to the longest I’ve had being one month needless to say I am a bear with a sore head when thishappens

[Roarah]

I have only had two " flares " in 27 years and both were symptom free leading up to servere organ involvement. I had kidney involvement at 23 only found due to protein in my urine at the gyn and after treatment was pretty healthy and usually antibody free until last fall when out of the blue I had a massive watershed stroke linked to Antiphospholipid antibodies. My antibodies again have all gone negative and I feel great.

[Treetop33]

I think most of us have 'mini' flares where you've done too much and start getting minor symptoms (joint pain, fatigue, headaches) and have to rest for a day - that's me anyway. Then sometimes the disease can spiral and you get a big flare - that's how I started out on this journey. That one is very hard to get under control, but hopefully when you are on a stable drug regime that side of things will be much less likely to happen.

My experience is that you have to reorganise your life to a large extent to help control flares. Avoid stress as much as possible, don't over tire yourself, learn to recognise your triggers etc etc.

[Mozart12]

Thank you !

I have looked long an hard for patterns but it seems when I get stressed....then as it stops then my hair falls out..badly 😪

Last year the fatigue has gone through the roof and I'm only pulling out very slowly......just not enough hours in the day to get everything done zzzzzz