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Old 03-12-2004, 01:44 PM   #1
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Debi6 HB User
Exclamation How long do Lupus flares last?

My ANA test was Speckled Pat? 1:80 they say that is positive. I also had Alph-1-Abtutrypsin, Serum of 146 abd Ceruloplasmin of 33.3 and my iron level is 8 and that is with taking 3 iron sulfate 325mg a day. There is one test that says it detected Antigen DNA (ds,)ss) High Titers-SLE. then goes on to say..Homogeneous (smooth) and Speckeled Antigen Dtected Sm, TNP, SCL-70 SS-A/SS-B SLE, MCTD, Scleroderma, Sjogrens... I have no idea what all this means though. I don't go back to the doctor until the 26th ughhhhh this is driving me insane. I have been looking at a bunch of things online but i can't find one thing that tells how long a fllare lasts.. Is it several days?? a day?? or what? The reason i ask is because there are some days that i don't feel like moving i am so tired and ache so bad...but then others days besides the achyness in my legs and knees i feel fine.

I have bad headaches, get tired very easy and feel so fatigued at times, severe mucsle aches in my legs so bad that i can't sleep, pain in my knees, pain sometimes in the upper leg joint where your legs connect to your upper body lol don't know what that is, sometimes i get shooting awful pain in my spine but it don't last to long, sick at my stomach at times... Oh and i forget things easy lol notice the oh part. I am also Type II Diabtetic

Any help would be so great!! I feel so lost right now...i have 6 children to take care of and sometimes i feel like everything is so hopeless cause i can't find anything out that i want to know.

Thanks

Debi

Last edited by Debi6; 03-12-2004 at 02:37 PM.

 
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Old 03-12-2004, 10:07 PM   #2
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AngelicBrat HB UserAngelicBrat HB UserAngelicBrat HB UserAngelicBrat HB UserAngelicBrat HB UserAngelicBrat HB User
Re: How long do Lupus flares last?

Hi Debi!

Welcome to the boards It sounds to me like you have Lupus blood work that is positive! What other symptoms do you have? A list would be incredibly helpful Also, if you could tell me a brief history (how many years you have had symptoms) then that would help too

Flares can be different in each person. Some people will have "good days" and "bad days" whereas others have bad months and bad years. My flares started brief, and now I am in one that has lasted over two years!! That is because I have been terribly mismanaged and I still haven't been treated. If people are on medication to help with the flares, they will have them less and less. I know people that have Lupus and are treated and haev NEVER had another flare! Lupus is a very individual disease.. every person is so different. Another thing is that if you have organ involvement (kidneys, brain etc) then it can affect you much differently. There are some people that get the fatigue, weight loss, joint pain, mouth/nose sores and rashes but have never had the organ involvement because either they were diagnosed early, or that is just the way things are for them. Those people are really lucky (sometimes I hate them LOL I have organ involvement). So the answer is that every person is different!

I am curious to see if you have any Neurological symptoms (headaches/migraines, have had a stroke, or leg clot or even a miscarraige). There is a syndrome that goes with Lupus called Antiphospholipid Syndrome that causes the blood to become sticky in some people with Lupus. There are two blood tests that can detect APS in patients, the Anticardiolipin Antibody and the Lupus Anticoagulant. See if those were listed on your blood work. Please take care and feel free to ask any questions that you want

~Angelic

 
Old 03-13-2004, 06:21 AM   #3
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Debi6 HB User
Re: How long do Lupus flares last?

Thanks so much for your reply,

Here are my symptoms

I have bad headaches, get tired very easy and feel so fatigued at times, severe mucsle aches in my legs so bad that i can't sleep, pain in my knees, pain sometimes in the upper leg joint where your legs connect to your upper body lol don't know what that is, sometimes i get shooting awful pain in my spine but it don't last to long, sick at my stomach at times... Oh and i forget things easy lol notice the oh part. I also get pains in my chest and left shoulder for no reason at all. This has been going on for over 2 years now and just seems to be getting worse.

I have no idea what to think or what to do. I am very confused. There is another thing on this test paper that says Homogeneous (smooth) Antigen Detected DNA High Titers-SLE.

Everything that i have found on the internet is like reading something in german. I haven't seen a specialist on this as of yet. My liver enzymes were AST 109 and ALT 187 with a smooth muscle of 1:40. So i went to see a liver specialist. He asked me all kinds of questions about my family and such. Since i have no idea who my father was (he split before i was born) and my mom died in a car wreck back in 93. So he ordered all kinds of tests. Well as silly as this might sound at least now i know why i feel like total crap most of the time. Sometimes my legs hurt so bad i just can't walk on them...sounds crazy i know....


Thanks again!!

Debi

 
Old 03-13-2004, 09:43 PM   #4
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Re: How long do Lupus flares last?

Hi again!

I am really curious to see if you have been tested for Antiphospholipid Syndrome. You do have symptoms for it, and since you are positive for Lupus (the Anti-DNA is HIGHLY specific for Lupus) than I suspect that either you have CNS Lupus (which causes Neuro symptoms) or APS. Please check out the "Neurological symptoms and possible Lupus? Please read!" forum on this board. See if you fit that, and if so please write down the blood tests that detect it and get your GP (family doctor) to test you. It sounds like you need to be treated so that you can feel better! The worst part of having symptoms of Lupus AND blood work is getting diagnosed and treated. It is such a journey!! I really hope that you can get to a Rheumatologist that specializes in treating Lupus patients soon. Did your GP send you to one? Its very interesting about your positive smooth muscle antibody. I have that one too!! My GP thought it was from Lupus though since smooth muscle is all over the body (heart, stomach, liver etc) Take care and talk to you soon~!

~Angelic

 
Old 04-19-2004, 11:10 PM   #5
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Join Date: Apr 2004
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Ryka2015 HB User
Thumbs up Re: How long do Lupus flares last?

Hey i heard you wanted to noe how long the flares last? well i was diagnosed with lupus last november, and they gave a hole bunch of meds for the facial rashes they havent work yet ive had the flares since last june and finally my doc gave me steroids (not the ones athletes use, the ones that are already in ur body or at least thats what the doc told me) anyways after 5 days of being on it they WENT AWAY but when the medication finished they came back and even worse so in my case ive had the flare for almost a year now but ask ur doctor for natural steroids and they should clear up in a while but make sure you take ALL of them dont skip any!!!!! (like i did maybe thats why they came back) GOOD LUCK

Last edited by Ryka2015; 04-19-2004 at 11:12 PM.

 
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