View Full Version : A question for the lupus veterans
05-07-2009, 04:12 PM
i'm fairly new to the lupus gig and still trying to get my head around what to expect going forward.. I know that everyone is different and symtoms highly variable.
But for you veterans that have been fighting the good fight for years: How often do you have flares? and how long does your average flare last?
05-07-2009, 05:15 PM
Hi Mortified....your question is a good one....unfortunately, I'm afraid you're not going to like the answer.
Lupus flares are about as unpredictable as Lupus itself. If your Lupus is active and causing you plenty of health issues, then you are going to have flares that come and go. During phases of very active Lupus, where the disease is wreaking havoc all over your body, your flares can come on without warning and cause you to endure many symptoms at a time. Then they can suddenly end, just like that. Then you might go a few weeks flare free or even a month or two. Or during active Lupus times, you might feel like you are in a mild flare all the time...you might feel like it never actually goes away.
There really is no way to predict how often someone will flare or how long it will last, because every single person with Lupus is different in how the disease manifests itself in their body.
In my situation, I spent about the first 5 years after diagnosis very, very sick, and in and out of flares constantly. I spent countless hours in the ER and hundreds of hospital stays. I remember being just devastated and very depressed over this and wondering if it was going to be that way for the rest of my life. Then, just as quickly as Lupus flares could come on, mine stopped. For whatever reason, it stopped attacked my internal organs and seemed to settle down and allow me some normalcy in my life. For me, I believe that part of the reason for that was because of the excellent Specialist I had. He was very patient (even though I wasn't) and thorough in his investigation through lab tests, keeping track of my symptom list, experiementing with and adjusting different medications to see what worked well with my body. He explained to me early on, that we were a team and we needed to work well together to evaluate many different factors in my Lupus and to try to find the things that worked for me to try to send my Lupus into remission and keep it that way.
It surely wasn't an easy process, nor a quick one, but eventally it paid off. Things seemed to click when we found the right combination of Prednisone and Imuran at the correct dosages to suppress my immune system enough to quiet down my Lupus. Then we spent the next few years keeping a close watch on any little symptom that appeared and trying to head it off before it caused the inflammation process within my body to start again. During those few years, I was able to succesfully go back to work and work full time for about 10 years.
I managed to make it through 2 successful pregnancies flare free and have now been in a strong, lasting remission for about the last 15 or 16 years. An accomplishment which I celebrate each and every day.
So, I guess the answer to your question is that flares are going to come on unpredictably, last as long as there is active disease going on in your body, and then end when the inflammation process is over. And, unfortunately you just have to ride them out. For me, I did notice that if I tried very hard to do ALL the right things to take care of myself...like eating healthy, getting more than enough sleep, taking my meds, trying to exercise, even minimally, making sure I saw my doctor regularly, my flares did not seem to be as intense. I was never sure though that what I was doing was affecting the length of my flares...there's honestly no way to know that for sure. I can tell you that there were 2 things that I'm sure affected how bad my flares would get, and that was stress and the sun. Those 2 things I am positive are the strongest triggers for a flare and can definitely affect how severe it will be. When I finally gave up on going out in the sun AT ALL, and I altered my life to avoid as much severe stress as possible, I began to have fewer and fewer flares and finally went into remission.
Mortified, I don't want you to get discouraged after reading this and think that there's no answer for your question. It's just that the answer to 'your' particular Lupus flares will be entirely your own. It's really one of those unpredictable things in life that you just have to wait and see how it plays out. But do not give up hope that one day your Lupus will quiet down and you will have a strong and lasting remission of your own. I am here to let others know that it CAN and DOES happen!
I'll be praying for it to happen for you.....
p.s. for the record, I'm a 27 year veteran.
05-07-2009, 08:09 PM
my flares will vary....sometimes i will have flares that last only a few days, but come around about every three weeks. Then, sometimes, i have flares that will last weeks or even months, and these don't come around as often.
sorry, but like lori said, and like you know, everyone is different and there is no way to predict when a flare is going to hit, or how long it will last, or how bad it will be.....when it starts, i just go along for the ride.
05-07-2009, 09:52 PM
Flares can be as unpredictable as a California earthquake, they just become part of life. Sometimes you get a 7.0 but is usually 1.5. Its been 24 years for me.
Hang in there,
05-08-2009, 10:18 AM
thanks folks.. i'm getting the message.. this thing is a complete and total crap shoot... but am very encouraged by Lori's 15 year remission... this gives me hope and a goal to shoot for!!
05-08-2009, 10:47 AM
When I was first diagnosed my doctor got everything under control. I did real well for a few years. But the last two years have been hard. This whole year has been than worst ever. I go to my rheumy Tue. Hope I can find out something then. Flares are so unpredictable. I have what I call good lupus days and bad lupus days.
05-08-2009, 04:43 PM
As everyone has said, this is a very individual challenge...but one thing I think we all have experienced is a "good lupus day." How many we get varies. Don't be discouraged. The good days are there...and you will have them. Hopefully, you will have more good days than bad days. You learn to redefine your quality of life. Trust me, through your most difficult days, you will learn to appreciate the most simple of things. I have learned many lessons in life, but nothing quite compares with what I call my "lupus lessons." As crazy as this sounds, I would not trade them.
Wishing you peace and wellness...
05-08-2009, 07:32 PM
Hi Mortified! I would just be repeating what the others are saying! LOL They all summed it up best! Sorry you are having to join us in this fight but we are here for you! XXXXXXXXXXXXX
05-11-2009, 07:54 AM
unfortunately everyone's right. my personal flares last for a few months, with good days and bad. the symptoms usually subside for a few years then come back. i'm in my third cycle of this now.
I HATE IT.