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Elo
07-01-2011, 07:54 PM
Hey there,
so I keep hearing all about Lupus flares. Anticipating them, theories as to what might cause them, treating them...
but I've never actually heard or understood how long flares last.
Do they last a few hours? Days? Weeks? Months? Can a flare last a year before it goes into remission?

I'm completely lost on this, but I've always wondered.

Thanks so much for your time!

tgal
07-01-2011, 09:13 PM
A flare is as individual as the person having them. For some they last only a few days while others can lasts months. Some people will go into a full remission although most have to keep on at least some of their meds always. As you learn the things that cause you to flare and you start being careful of the things that trigger you (IE- Sun exposure) there will most likely be less flares as well as ones that don't last as long.

Hope that helps

CanadianGal
07-01-2011, 09:47 PM
Like Tgal said, a flare is as individual as the person having them. For me, my flares last six to nine months and my major cause is stress. Sun does effect me when I'm in a flare but it doesn't seem to cause one to start. As for treating a flare, drugs and more drugs. It can be frustrating because what worked one month may not work the next. It's a juggling act trying to find the right combination and dose of meds.

I hope this gives you some more insight into flares. Good luck!

Elo
07-01-2011, 10:21 PM
Thanks! That does help.
Another question though, what defines a flare up? I mean, if you're in "remission" or not flaring, do you feel, for lack of a better word, normal? Or well? Or is it just that Flares are times when you feel *really* bad, or much worse?
Do you spend more time in a flair or in remission? :/

Sorry about all the questions - i just can't seem to find answers anywhere else.

CanadianGal
07-01-2011, 11:20 PM
Never need to say sorry for questions. It's the only way to learn about what we have. I've had Lupus for about 15 years but the official diagnosis only came two years ago. I probably would still be in limbo land if I had stopped questioning what the doctors had been telling me.

My remissions only last about a month (if I'm lucky maybe two) then I start into another flare cycle. When in remission, yes I do feel "normal". My flares start slowly and build to "really bad". It usually starts with the butterfly rash, fever, headaches, fatigue, nausea. Then progresses to joint/muscle pain, brain fog, carpal tunnel, mouth ulcers, stomach pain, swelling of my eyelids, scleritis--(very painful and not too pretty). Equally painful--the extreme pain of swelling of the lining around my lungs and heart. Oh yeah, and depression too.

Unfortunately, I spend more time in flares than in remission. Hopefully that will change with the newest round of drug treatment I'm on.

Keeping a diary of what you did each day and how you feel really helps the big picture of your flare cycle. It can also help you to understand what is your trigger for a flare.

Hope that helps.
Cheers!

steve.b
07-01-2011, 11:29 PM
when you are in a flare......
is anytime that lupus is "more" active.

when you are not in a flare.....
is when lupus is "less" active.

for different people the amount of more and less will be different.
for some people, less is full remission.
for others is is still a very painful time.

likewise the amount of more will be different as well.

also the time of flare and non flare will differ between people, and between cycles for any one person.

it is this inconsistancy with everything, that makes so many doctors question auto immune problems.
there is no text book symptoms, like doctors want.

i hope i have made myself clear, feel free to send me a visitor, or personal message, if you want to discuss this more.

lovedbyHim
07-01-2011, 11:36 PM
Gosh Canadian gal, it could have been me writing that! Stress is a main trigger for me, but if I am not careful with covering from UV I will get flulike symptoms. My normal is never like I used to be however. I am always tired now, but I also have fibromyalgia and hoshimotos thyroiditis from the lupus. I truly lost who I was and I sure do miss her(grin).

What helps me most in a flair is sleep and increased steroids. I hope this helps.

Linda From Australia
07-01-2011, 11:54 PM
I have been diagnosed a year now. I am still learning what is and what is not a flare. I have also been waiting for that wonderful thing called REMISSION to appear in my life. At my latest Rheumy appointment I was told that my Lupus was under control, however, I feel even worse now than when I was first diagnosed. I thought I was still in a flare, but apparently I am not. The doctors are finding heaps of other things wrong with me, probably because Lupus has run over me and left me there in a heap.

Though my Lupus is under control, I still have Lupus symptoms. I burn easily in the sun, get joint pain, rashes, fatigue, sleeplessness at times, etc.... Some people do have the great pleasure of having a true remission, but most people here just experience some of their symptoms are less severe. Some people come here for support and when they are in remission they go off into the world and have a wonderful life, Lupus symptom free. And then when they start having a flare, they come back to WHL.

There are a core group of people who stay here on WHL whether their Lupus is active or inactive. Many people are house bound, and at times we are their limited contact with the world out there. Some of these people can be classified as "Vampires" because they can only surface at night time because the sunlight does so much damage to them. Please feel free to research as much as you can, I really hope that you find that you don't have Lupus, this disease is terrible, but we are all wonderful people, and have many stories to share. In this forum you will find that we can be crying one minute, laughing at another, angry the next, then giving cyber hugs. When I say angry, I don't mean with other members, it is mostly about doctors not listening to our complaints.

CanadianGal
07-02-2011, 12:16 AM
Sorry, I should have clarified "normal". I don't feel like I did when I was healthy and 20 years old. But I expect now that I'm 40, even if I was healthy, I wouldn't feel the same as when I was 20. Change is a funny thing--most of us have a difficult time with it but really that's what life is all about. Constant change. I guess we all have a mental picture of ourselves at a time when things were good that we aren't ready to let go of. (myself included, I still have a pair of jeans hanging in my closet from when I was 20--really who am I kidding--I will never fit into them again, but yet there they hang.)

Even in remission when I'm feeling "normal" I still have fatigue but I guess the "gift" of having Lupus has made me realize I can no longer compare myself today to the way I used to be. And I have to say, LovedbyHim, that even though you may grieve for the old you you lost, I've read lots of your posts and I think your you today is pretty terrific!

lovedbyHim
07-02-2011, 03:03 AM
Thanks CanadianGal! I think you will find that I get just a little too silly when I am very sick. Laughter is such good medicine for all of us her suffer so hard and long.

Nat
07-02-2011, 08:35 AM
Hi elo,
Everyone has hit the nail on the head, flares differ from person to person in symptoms, length and severity. Personally I know the disease is flaring up when I get severe joint pain and pleurisy. I, luckily, dont suffer from fatigue or sensitivity to sun exposure. Still haven't quite worked out exactly what sends my symptoms to flare up but I have learned (the hard way) when you do start to feel them, ignoring them and thinking you can tough it out is not a good move and mostly ends up making them way worse. most of the time I feel fine but I've been on steroids for the past 4 months to try and curb the disease activity from my last flare in March which sent me to hospital. I'll start to notice the symptoms peaking their ugly head when I start to get down to about 10mg Prednisolone. Don't feel bad for asking questions either its how everyone here has learned more about this disease and how it affects everyone.

ruziska
07-02-2011, 10:17 AM
Not to sound like a downer here,but I can't remember a day since April 15, 1995 when I haven't been in a flare. For me it us just varying degrees of it. At best, I can get through the day with no painkillers. I have an extremely high pain tolerance level so I just "suck it up" most of the time. At worst, I'm in a wheelchair and wishing the bathroom wasn't so blasted far away. On a scale of 1-10 with being in a wheelchair, the majority of my days tend to hover around 4- 5. Anything higher than 6 and its painkiller cocktails. Hits 10 and me and the doc spend a lot of time together. The flare levels can also vary throughout the day for me. I've woken up feeling pretty good and by noon WHAM! Same with fatigue. Fatigue for me strikes anytime, anywhere without warning or provocation. Can last a few minutes or knock me down for the rest of the day. I think of Lupus as the houseguest that refuses to leave. I've TRIED to kick it out but it JUST WON'T GO AWAY. And don't get me started on the "lovely" malar rash. Fortunately I look good in red! Just bought a lovely summer cardigan this morning in red that will compliment it nicely...

debbie-b
07-02-2011, 12:47 PM
Hi Elo,

My flares are different almost all the time, some last weeks or months and some last only days.
Even though I have some time, which I call remisson, sometimes a few weeks at the time, without a flare.
But I am never painfree, the pain is just more barable, when I am not flaring.
I can't remember the last time I was pain free, but now I am happy when the pain level is 5-6, because during a flare it is 8-9.
The last time I saw my rheumy, I told him that I have had two flares since I had seen him last, he asked me what triggered the flare, I told him that I don't know, I am guessing it's stress at work, ultra violet lights at work, physical stress at work,
not to forget the fact, that I am in pain every day. So I guess, I can't pinpoint one reason, there are many.

Debbie

Elo
07-02-2011, 10:48 PM
Thanks so much to all of you! You've really helped me to understand it better. Since I got sick, I've been continuously sick every day without fail (Excluding when I was testing out steroids), and it made me wonder if the flares could really be as short as a few hours long. Since most of the time I'll be sick for a few hours, then moderately okay, and then back to being sick again. I haven't been sick long enough to really see many patterns with my overall health, and not just the day to day stuff.

It's really great to be able to talk to people who know what they're talking about. Sometimes I feel like the doctors have no idea, and it's the patients I get more out of, hehe :D

tgal
07-02-2011, 10:54 PM
Thanks so much to all of you! You've really helped me to understand it better. Since I got sick, I've been continuously sick every day without fail (Excluding when I was testing out steroids), and it made me wonder if the flares could really be as short as a few hours long. Since most of the time I'll be sick for a few hours, then moderately okay, and then back to being sick again. I haven't been sick long enough to really see many patterns with my overall health, and not just the day to day stuff.

It's really great to be able to talk to people who know what they're talking about. Sometimes I feel like the doctors have no idea, and it's the patients I get more out of, hehe :D

You will find thread after thread where we complain about doctors so you are in the right place for that too!

Peridot20_Gem
07-03-2011, 10:01 AM
Hi Elo,

You've had sound advice from everyone and what (Nat) said it differs from person to person.

They do last from days to months and in time you'll learn how certain things can start them and your instantley think oh god i may have a flare coming.
Like myself in the shade with the sun within 10mins causes a blister flare and when i don't have that i have an hidden flare under the skin which makes my skin itch like mad, you could actually rip your skin away but i'm under a dermo and for the flare/flares have found steriod based creams to be excellent in removing them.

Terry xxx

Peridot20_Gem
07-03-2011, 10:05 AM
Thanks CanadianGal! I think you will find that I get just a little too silly when I am very sick. Laughter is such good medicine for all of us her suffer so hard and long.Corncerning our lovely member Tammy...she's very hypo and loves laughing and will put any member in a good mood whatever time of day.lol xxx

WHICH IS LOVELY TO CHEER WE UP