Recently, I have been able to feel a flare coming on which I hadn't before. I have been taking plaquenil for about 3 months now, and my fatigue is better. The swelling in my feet is still an issue, but its improved.
Before, it felt like my pain moved constantly, so I didn't know if I was in a new flare, or even if it was one because I'm still new to lupus and I didn't even know what a flare was. There were even different opinions of what a flare was, which confused me as well.
Is it possible to be in flare for over a year? Or longer? Please share your thoughts
I wouldn't call it a flare- your disease is just currently active. Many of us are maintained at a level of low disease activity and the illness does normally wax and wane a bit. A flare would be the onset of symptoms when previously you had no symptoms or the onset of svere symptoms when previously they were mild.
A year ago, I had pain in my foot which sent me my GP, and then an after care doctor, then to Decatur vein clinic and back to my GP. He put two and two together, and had an MRI which showed tendonitis and a bone bruise which referred to an orthopedic doctor. My GP also had some blood work when I said my hands and feet hurt so bad, and that led to a referral to my Rheumatologist when my ANA came back positive. I had nothing going on healthwise until this all started. The chronic fatigue, but I thought I was just crazy and lazy and my husband couldn't understand why I forgot to follow through with things when I got home from work : p At least he got dinner (most of the time) lol.
Poobie's info is quite accurate - disease being active as opposed to a flare.
The good news is that is can go into a sort of remission and become less severe.
My rheumy added Savella to my meds - it's for Chronic fatigue and the fatigue has been a major issue for a couple years. It works great for me and I feel better than I have in a loooong time. I no longer take Imuran. Was going to switch to Plaquenil as well, but since I'm doing good, I'm leaving everything as it is.
I agree with pooble. Your lupus is just active. I have had this disease 40+ years, I've had about 4 "remissions" of up to 10 days, but rather than thinking of it as a constant 40 year flare, I just think of it as lupus being lupus.
I have never been in remission. As Poobie said . . .
I struggle when "bloodwork" is off. My medications are changed so that the tests return to normal. This still doesn't eliminate symptoms.
The docs theorize that I had lupus since my 20s. Only abnormal blood test was + ANA before being officially diagnosed in 1999 with my first autoimmune disease--autoimmune hepatitis. And, I really felt pretty good until 2008.
I meant at least I remembered to get him dinner : p
In all honesty, there were many,many times where he said lets just go out. He knew how exhausted I was. Sometimes I don't know how I made it through work, and I would just come home and he'd tell me get a rest and he took care of things. I am generally not a stingy person, but I'm keeping him all to myself : )
Trisha
traci153 said:
Hang in there!
Poobie's info is quite accurate - disease being active as opposed to a flare.
The good news is that is can go into a sort of remission and become less severe.
My rheumy added Savella to my meds - it's for Chronic fatigue and the fatigue has been a major issue for a couple years. It works great for me and I feel better than I have in a loooong time. I no longer take Imuran. Was going to switch to Plaquenil as well, but since I'm doing good, I'm leaving everything as it is.
I think I had my first flare in 2008 after my mother died, I had pneumonia within days. It just hit me like a truck.
USAGURL said:
I have never been in remission. As Poobie said . . .
I struggle when "bloodwork" is off. My medications are changed so that the tests return to normal. This still doesn't eliminate symptoms.
The docs theorize that I had lupus since my 20s. Only abnormal blood test was + ANA before being officially diagnosed in 1999 with my first autoimmune disease--autoimmune hepatitis. And, I really felt pretty good until 2008.
I have never been in remission, either. My SLE is always active and some days are much better than others. Right now, I'm flaring because my symptoms are at their worst and I'm in so much pain. Tomorrow may be different and I might feel better. I never know from day to day what my body will be like and it is hard to plan anything. The fatigue is kicking my butt right now, too.
I have never had a remission and have really been in a constant flare for 20+ years. However, early treatmnt has kept it out of organs. It is different for each person sweetie. My docs are surprised that flares are constant for me as well. But I go on and never give up!!!
HEY!! ITS BEEN 7 WHOLE YRS SINCE I HAD A FLARE. LET ME NOT SPEAK TO SOON LOL..BUT YES I BELIEVE THE KEY TO LUPUS IS TO GET ALOT OF SLEEP SO YOU CAN BE WELL RESTED TO FUNCTION FOR THE NEXT DAY. MAKE SURE YOU TAKE YOUR MEDS AT ALL TIMES. IT WORKS FOR ME. THEIR ARE 5 DIFFERENT TYPES OF LUPUS; IT ALL DEPENDS ON WHAT TYPE AND WHAT SYMPTOMS ARE WITH EACH ONE. SOME OF THEM ARE MOSTLY ALIKE. SOME PEOPLE FLARES ARE LONGER THAN OTHERS. JUST HANG IN THERE SWEETIE.IN DUE TIME THINGS WILL FALL INTO PLACE.I WISH YOU WELL,TAKE CARE.
Thank you everyone for your great posts! I'm trying not to worry about this as much as I am trying to understand "why". Not so much why me? or poor me? I've not really felt that way. I guess more like why now? I do believe that I've had it all my life, and I've had some periods when it was active and no one questioned it. Even when my mom took me to the doctor the first time I lost a lot of hair, it didn't go any further than "you need more sleep". I recall another time I was asking the doctor about my fatigue, and he just looked at me with a blank expression. Last time I saw him btw. And no blank looks aren't free lol.
I am pleased the plaquenil is helping you, as it did me mainly with my skin and leg spasms but now it's been upped hopefully it will do more.
Trisha you can get pain normally from the Lupus and it does travel through the body and lodge in places...flares make the pain alot more severe and double what you usually have and most of the time other issues can arise.
A flare can go from 6wks onwards and these are known as chronic and usually meds are either upped or medication is added.
It's all according to how you pain feels...does it feel like it's alot more than when your symptoms of pain was or usually are?
Hi sunrisetrisha, My name is Beverly L., having a flare is very hard sometimes ! It's so much to deal with , but if your having one for that long, i would say for more than 2-3 months you really need to see the doctor quickly !!!! Yes the plaquenil for a while and it is working to relieve some of the pain due to the flare , just keep taking it as though your doctor says. I also relaxe as much as possible- oh yeah!!!! STRESS can pay a big part while having a Flare also . Maybe the doctor can give you something for fibromagalia that comes with flares, that's if you have been hurt for that length of time . Relaxing is a key to flares along with not stressing as much as possible ( try not to over due it !!!! which we both know just don't happen all at once ) . Hope this helps and that you get better soon- okay !!!! .....Beverly L.
I'm flaring like crazy right now and there is no end in sight. I just try and get as much rest as possible, keep the stress level down and take pain meds to help me sleep.
Believe me, I've walked out on numerous A-hole doctors who don't have a clue! I let them have it if I feel they are ignoring me or mistreating me...it has happened several times and I won't put up with it. My question to them is "do you have Lupus?" and they always say "no." I tell them they don't know what it feels like to be me! HUGS! Lori
WHY is the big question and I keep praying for answers...and a cure!
Love,
Lori
sunrisetrisha said:
Wow!
Thank you everyone for your great posts! I'm trying not to worry about this as much as I am trying to understand "why". Not so much why me? or poor me? I've not really felt that way. I guess more like why now? I do believe that I've had it all my life, and I've had some periods when it was active and no one questioned it. Even when my mom took me to the doctor the first time I lost a lot of hair, it didn't go any further than "you need more sleep". I recall another time I was asking the doctor about my fatigue, and he just looked at me with a blank expression. Last time I saw him btw. And no blank looks aren't free lol.
Beverly, is correct in what she's saying that a flare should'nt go on that long and i agree because you do need furthur treatment because if you are having a chronic flare they can really mess your system about.
You also maybe suffering from stress like beverly said and might not think so because you've had some issues to deal with in the last few months and still are...try your hardest to relax more but please go and either see your GP or try and book an appointment for your specialist.
Good morning. I’m new to this sight, but I agree w/the others. I’ve had active lupus/MS for 7yrs now. There is a big difference between normal disease activity & a flare. Normally you will notice significant changes before the onset of a flare: increased fatigue (I usu describe it like a battery that has all the energy drained out), increased pain, lupus fog memory problems, increased, swelling etc. For me most people around can see a visible change in my demeanor before a flare & I’ve been able to pinpoint major triggers of my flares: menstrual cycle, change in seasons, too much sunlight, stress, working long hrs, overdoing it period, infection & sickness. When I notice the beginning warning signs of a flare I try to do something immediately to stop it: go lay down & rest, stay out sunlight, let my doctor now we usu make adjustments to meds, changing ur diet is very helpful. I’ve been on every level of treatment: corticosteroids, non steroidal anti inflammatories, anti malarials, Intensive IV treatments, & immunosuppresive meds too. I got frustrated because the side effects from all the meds r just as bad as the disease. I researched diet changes. U shld look into it. A gluten free, soy free, low dairy & sugar is very effective in decreasing disease activity. Gluten protein & soy tend to trigger the immune system to attack. I have several clients that have been doing it & have had significant decrease in symptoms. One client that was severe has had no disease activity in 3mths. I have had a decrease in symptoms however I haven’t been as watchful of ingredients & have eaten gluten w/out noticing & have had an instant flare. I hope this helps. Treating autoimmune is holistic. U must address ur mind (relation, positive attitude), body (exercise, healthy diet stressless, no your limits), spirit (prayer, yoga, meditation). I dont like pain pills. I use progressive muscle relaxation, meditation & controlled breathing. Hope this helps. Stay encouraged. WE HAVE LUPUS, BUT LUPUS DOESN’T HAVE US.
Thank you for your imput and like myself you've got to know your symptoms well and when flares are occuring, you seem to have been through such alot of issues yourself i really do feel for you but you made a good point on the meds they can be worse on affects than the disease...yet again some people don't have affects, it's all down to the individual in general and their system.
