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Old 02-22-2010, 08:56 PM   #1
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How long have you known?

I am wondering how long everyone has been diagnosed. Also, how long do you suspect you have had the disease (because most of us suspect a long while before the diagnosis)And those who have not yet been diagnosed, how long have you had symptoms?
The reason I am asking is because my husband (and I) are worried about it causing a shorter life span.

 
Old 02-23-2010, 05:59 PM   #2
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heidiclouser HB User
Re: How long have you known?

I was diagnosed 16 years ago. I had symptoms for maybe a year before the dx. If treated properly one should expect a normal life expectancy.

 
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Old 02-23-2010, 09:51 PM   #3
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Re: How long have you known?

I started having symptoms some 10-12 years ago but was not taken seriously until I pushed the issue. I was initially diagnosed with Fibromyalgia eight years ago and went through a whole host of med trials for almost 5 years before I finally got the Lupus diagnosis by the 3rd Rheumatologist I have seen. I first began with medication allergies, having reactions to meds I had taken off and on for years. Then came some neuro symptoms and general aches and pains and some problems with memory, concentration, blurred vision, etc. I am just glad I was finally diagnosed properly and given the treatment that I needed. Luckily, I do have SLE but no major organ involvement at this time, I am just a challenge to medicate properly or sedate due to the allergies I have acquired. BTW I am in my late 50's if age might be on your mind.

 
Old 02-24-2010, 04:32 AM   #4
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Re: How long have you known?

Hi. I knew from childhood something was wrong. Multiple crises from sulfa antibiotics (convulsions), with multiple hospitalizations. Widespread blistering lesions. In early teenage years, 3-month-long periods, low-grade fever, episodic widespread pain, elevated sed rate, and leukopenia. Mid-20's, severe irritable bowel. Early 30's, urinary misery and migraines. Then a doozie hospitalization (lowest point of my life, maybe vasculitis?). Late 30's, a different rash began that erupted every 2-3 months. Weight loss & hair loss. ETC.

But excluding several crises points, I stayed subacute, meaning no signs of major organ involvement. I saw so many drs. it would make you laugh. Turns out my Dx is very low-odds: negative ANA but positive anti-Ro, sometimes called "Ro-lupus". I finally went to metro teaching hospital rheumie, who also sent me to a dermatopathologist for one final skin biopsy. While only 25 miles separated new drs. from old, what a world of difference knowledge-wise, I *suspect* because I fell in such a low-odds category.

When I first was told lupus was a possibility, I envisioned the worst = kidney failure. I had to READ to learn that it can be milder, and that people with organ issues fare much better today than in the past. I didn't understand its enormous range, the available treatments, etc. Once I started reading library books, I calmed down quickly and became much more positive. Hope this helps! Best wishes, Vee

 
Old 02-24-2010, 04:19 PM   #5
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Re: How long have you known?

Quote:
Originally Posted by VeeJ View Post
Hi. I knew from childhood something was wrong. Multiple crises from sulfa antibiotics (convulsions), with multiple hospitalizations. Widespread blistering lesions. In early teenage years, 3-month-long periods, low-grade fever, episodic widespread pain, elevated sed rate, and leukopenia. Mid-20's, severe irritable bowel. Early 30's, urinary misery and migraines. Then a doozie hospitalization (lowest point of my life, maybe vasculitis?). Late 30's, a different rash began that erupted every 2-3 months. Weight loss & hair loss. ETC.

But excluding several crises points, I stayed subacute, meaning no signs of major organ involvement. I saw so many drs. it would make you laugh. Turns out my Dx is very low-odds: negative ANA but positive anti-Ro, sometimes called "Ro-lupus". I finally went to metro teaching hospital rheumie, who also sent me to a dermatopathologist for one final skin biopsy. While only 25 miles separated new drs. from old, what a world of difference knowledge-wise, I *suspect* because I fell in such a low-odds category.

When I first was told lupus was a possibility, I envisioned the worst = kidney failure. I had to READ to learn that it can be milder, and that people with organ issues fare much better today than in the past. I didn't understand its enormous range, the available treatments, etc. Once I started reading library books, I calmed down quickly and became much more positive. Hope this helps! Best wishes, Vee

Can you explain your symptoms and reason for hospitilization? Did they diagnose you with vasculitis? I am worried about this myself. Sometimes it is so painful for me to walk from my living room to kitchen (30ft). But, if I sit down the pain will go away. Same thing with my arms, very very little use can cause them to ache and I will need to rest them.

 
Old 02-25-2010, 04:59 AM   #6
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Re: How long have you known?

Hi. It started out looking like gastroenteritis: upper & lower GI tracts went convulsively berserk, then potassium depletion affected heart function. They considered various things: parasites, food poisoning, environmental causes, substance abuse [idiots!], you name it. Couldn't eat, was glued to IV. I improved enough to go home, but overall the episode lasted some weeks. Many years after, on the brink of a Dx, a dr. said, that was your worst event, and, gee, it may have been mesenteric vasculitis. ()

I have *cutaneous* vasculitis on my ankles. All I do for that is to watch. Dr. said as long as skin surface isn't compromised, not a problem. (In contrast, internal organ vasculitis IS serious, is what I'm trying to convey.)

I was hospitalized in my early teens for a pain episode, but not because of just pain, of course. Of the various blood values that were off (sed rate, etc.), I think they were most worried about extremely low WBC.

Your dx is recent, right? (I just reread your earlier posts.) I was told that Plaquenil can take as much as 4-6 months to reach full effect, which doesn't mean you won't feel "some" relief earlier, of course. I take OTC NSAID's daily. Even so, there are bad days. Did your dr. recommend anything in addition to the Plaquenil that could help your pain levels? But pain doesn't necessarily mean anything "worse" is rearing up. Lupus is an inflammatory disease, so pain & fatigue are among its most common symptoms. On the other hand, if you are noticing NEW things, by all means, press for answers! Hang in there & keep in touch, OK? Warm wishes, from Vee (P.S. Don't know if you live in a sunny climate. If you do, you really should discuss UV exposure with your rheumie, as it's a flare trigger for many with lupus---the majority, I believe. While I hate avoiding sun, doing so has helped me a lot.)

Last edited by VeeJ; 02-25-2010 at 05:21 AM. Reason: correction

 
Old 02-25-2010, 06:02 AM   #7
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Re: How long have you known?

I was diagnosed 27 years ago. I was very, VERY sick, 7 years prior before they finally put the puzzle together.

With "luck" and me taking really GOOD care of myself, I am doing okay. I do suffer, as we all do, but we do not have to view this as a death sentence any more.

Hope everyone has a pain free day...or at least one that is managable...

Madison

 
Old 02-25-2010, 07:30 AM   #8
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Re: How long have you known?

This is not a new symptom. I just cannot stand the feeling in my neck like I am being strangled. I also have really bad pain in my lower abdomen. Sometimes It hurts to roll over when I am in bed. I get to go tomorrow and have a ct, echo and test for pulmonary capacity. I am trying my best not to let depression set in. It is difficult to think I may never be able to do the things I used too. As far as not being in the sun. We get to experience the best of all 4 seasons. So, during the summer our lives revolve around being in the pool and having pool parties and being out on the boat. We love to camp and fish. Wish I could be as lucky not to be effected by UV rays (guess I need to sell the tanning bed). Maybe a good sunscreen and an umbrella will help.

Last edited by johnstonx5; 02-25-2010 at 10:14 AM.

 
Old 02-25-2010, 09:48 AM   #9
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Re: How long have you known?

i was one of the lucky ones i was diagnosed with it at the age of two...at the time i was the youngest known case of lupus but thats going back in 1988

 
Old 02-25-2010, 08:11 PM   #10
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darkwater HB User
Re: How long have you known?

Hi, there. I was diagnosed in April of 2004 after about six months of whole body itching, hair falling out and thick "lupus dandruff", rash on my face, arms and back, little nobby bumps with purple centers on my fingers, joint pain, strange fatigue after sun exposure, strange bruises and those little pin***** blood dots on my skin (petichae or something), some kind of red/purple vasculitis circles on my thighs, swollen lymph nodes. Jeez, did I leave anything out, lol. Oh yeah, my kidneys were damaged somewhat by the time I was diagnosed, but I have a mild case. My doctor shocked my system with some high (60 mg) doses of steroids that gradually tapered down over a year or so and everything has pretty much stayed in remission for the past 5 years with me taking 5mg prednisone and 200mg plaquenil daily today, with just some minor flare-ups. I have had two kidney biposies that showed membraneous nephritis in my kidneys.

What I believe was my first definite episode was about 1994, when one weekend, I just felt ill and had swollen lymph nodes in my neck, those bumps rose up on my fingers, all those tiny red dots on my skin, and my skin started to be intensely irritated for no reason whatsoever. I was put on a dosepack of steroids and told I had a fabric softener allergy (LOL). The symptoms mostly went away. Over the years I would have isolated incidents with strange symptoms that came and went: nosebleeds, episodes of lockjaw, my skin would sting as if something were actually stinging me, the insides of my ears would get raw and inflammed and clogged with scabs that affected my hearing at times. And every so often, a few times a year, I get this jolt of pain that runs up the back of my neck and feels like an electrical shock. The jolt only lasts two or three seconds, but it leaves me so stunned and just drained. Reading online, all of these symptoms are not strange for people with lupus.

Unless you have one of the most difficult cases with severe organ involvement, you can mostly expect to live as long as anyone else. Even those cases can be treated so much better than in years past. What you need is to be an informed patient and a doctor who will see to your whole body being well and send you to specialists when needed and who will take preventative measures before damage is done that can't be reversed. Best of luck!

 
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