What is an actual flare up ?

[Geordie-chick]

I have been suffering with suspected lupus now for over 2 years. My consultant spoke of flare ups but not in detail only mentioned it. Now I assumed a flare up of lupus was not being able to move ( like before for I was on the steroids and medication) but now I just don't know. I have been reading things on here now and I haven't got I clue.

[Hidden]

Hi Geordie-Chick - lupus takes many forms. Stiff joints is only one of the symptoms, though it is a common one. You can be in a flare and not even know it sometimes (well, I didn't know I had nephritis so badly my kidneys were failing until they took me into hospital). Its diversity is one of the reasons it is so hard to diagnose because it 'mimics' other conditions.

Lupus can cause inflammation in any part of the body - blood, skin, lungs, heart, joints, other vital organs. It is your immune system attacking you, instead of fighting off germs from outside the body. You may have horrid arthritis now - but maybe not forever. Other symptoms may come to the fore. Lots of people have a raised temperature and severe fatigue when they are in a flare - so I suppose that is something most people with lupus have in common.

Lots of information here:

lupusuk.org.uk/what-is-lupus

[Geordie-chick in reply to Hidden]

Thank you MaggieS I've been I'll on and off the last 3 month with sinus infections throat infection and so on I put it down to all the injections for flu etc that they gave me. As for a temp omg I sweat terribly at the moment it's disgusting to be honest but I put that down to the medication.

[Purpletop]

A flare is a worsening of your condition, whether through new symptoms or current symptoms going much worse. Each of us has a different threshold when we know that the lupus is misbehaving to the extent that it needs a call with a doctor, an increase on steroids, a visit to the hospital. You need to know your baseline lupus activity to be able to asses if it gets worse. To give you an example, for me the moment I start losing hair by handfuls or night sweats start occurring I know a flare is close. But it can be different for others.

You need to learn how this illness affects YOU on a daily basis before you know whether you're in a flare or not. Unfortunately the blood tests are not always indicative of whether one is in a flare, it is a combination of those and the way you feel on a daily basis.

Don't hesitate to ask your doctor to clarify this for you, although it will take some time to get to know what it means for you.

[Geordie-chick in reply to Purpletop]

Thanx

[Petrof]

Yes, I also find it so difficult to know if I am having a flare up, an infection or both. I think it is usually both - I get a virus infection (I observe other people around me and if they have similar but not such bad symptoms, I assume I have the same). and with that I usually have worsening of lupus symptoms - joint, muscle pains, headaches, dizziness, sweating....But, frankly, I am also still trying to work this out. This winter seems to be particularly bad and I am wondering if I should try the flu vaccination next year. Did you have any problems after it?

[Geordie-chick]

I was told to have it along with the meningitis and another one and iv suffered with sinus, throat and chest infections things I never normally have but it effects everyone differently .

[hatelupussucks]

i get headches pain in my hands it hurs to walk and to write i feelmlike i lost part of my brain sometimes i cant think stright my joint hurt my back even worst and my neck i was told that devepoled this thing call ataxia know as T7 well i have T4,T3,T8,along with it means my brain and my spain have been attacked by lupus.as anyone ever been told that they have ataxia due to lupus sle.and it attacked my heart as well i had a main stroke it sucks