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    Old 05-17-2016, 07:10 AM   #1
    396000384
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    What were your first symptoms?

    I am just curious how others progressed and if you remembered some of your first symptoms that made you think "hey something is wrong"... I woke up today and had a blood red eye. After reading some articles it seems lupus can cause broken blood vessels in your eyes (and other places). It looks more serious than what it is.

     
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    Old 05-18-2016, 07:44 AM   #2
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    Re: What were your first symptoms?

    I remember having rather sudden onset of sacroiliac pain-intense burning pain on both sides. Then I started having bilateral joint pain in joints not typically associated with osteoarthritis. Like my clavicles, ankles, wrists (I was in my low 30's at the time). The joint pains migrated, 1-2 weeks in one place, then somewhere else, etc. I really knew something was wrong when I got pleurisy frequently in the absence of smoking or viral infections. Persistent fatigue, sun induced skin rashes, hair loss came shortly after, and now it is 35 years later.

     
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    Old 05-18-2016, 09:13 AM   #3
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    Re: What were your first symptoms?

    Hi & welcome. As is seen in quite a few female lupus patients, I had a big hit at puberty: severe pain along long bones of arms /legs, joint pain, low WBC's, elevated sed rate, low-grade fever, hair loss, massive fatigue. By mid-20's, severe irritable bowel problems (deemed "functional" since repeated invasive tests ruled out conditions like ulcerative colitis, Crohn's, bowel cancer, etc.) By early 30's, migraines. In late 30's, target-like photosensitive skin lesions that 8 or more derms failed to diagnose. I finally took myself to a rheumatologist affiliated with a Manhattan teaching hospital, who dx'ed me in less than a month, with the anti-Ro "subset" of SLE. Will take Plaquenil for the rest of my life (it's helped a lot). Also must avoid/block sun.

    How about you? Has your only suspicious symptom been this broken blood vessel in your eye? If YES, and nothing else is going on, I probably wouldn't conjure up something as serious as lupus. I'd touch base with my eye doctor & discuss the various causes. But let us know what happens, OK? We're here any time you feel like talking. Sending warm wishes!

     
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    Old 05-18-2016, 10:44 AM   #4
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    Re: What were your first symptoms?

    I have had a High ANA for years, joint and bone pain, sun rash. The blood vessel popping is just another. Most symptoms you find online are just the common ones. I wonder how many others there are that are not discussed much. I have not received a diagnosis yet, but go to the rheum every 6 months.

     
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    Old 05-18-2016, 03:28 PM   #5
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    Re: What were your first symptoms?

    Hi again. For sure, a repeatedly high ANA is something to follow up on, not to mention your joint pain & sun rashes. Have you read the "sticky posts" (permanent info posts) located above the user threads? You could find basic info there on the various lupus-specific rashes (there are actually many, more than just the best-known ones, malar and discoid), on criteria used to diagnose & classify, on good reading resources, etc.

    Then maybe you could visit your library for some loaners? I kid you not, but a single sentence in a borrowed lupus hardcover is what convinced me to try again, with a new and more sophisticated rheum. (It was a sentence about a lupus-specific rash that I'd never heard of before. Bingo!)

    Have you been getting copies of your blood labs, to see which antibody tests your doctor has been running? Feel free to post on those. While we're just patients, across the group, we've sure had a ton of labs...

    Slow dx'es are torture for patients, I think. I have a very close friend who'd been following up on her high ANA's (1:640 and 1:1280) for several years. Her rheum was looking for lupus or RA, I'm guessing from the tests he was repeating. Lo and behold, she had a form of vasculitis instead, and she took a HUGE kidney & lung hit last month, finally getting dx'ed the hard way, in the hospital for days, and in serious shape. I kept wanting her to try a new rheum in the "big city", but no, she was OK with her suburban rheum. Looking back, I wish I'd jammed her into my car and forced her to try someone new!

    If you're feeling stuck in place, maybe you could start researching other possible rheums? I did. I kept a "rainy day list" in file, so when I got a new batch of symptoms, I booked with a new rheum. (I figured my blood labs would be more revealing when I was beginning a new flare, as opposed to being run when I felt normal-ish.) IMO, the teaching hospital rheums may be better at diagnosing the AI's, in that they see more patients, therefore they see lupus and its "close cousins" in all of their wildly varied presentations. Just a thought... Drop a line any time, OK? Wishing you a breakthrough soon!

     
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    Old 05-18-2016, 10:34 PM   #6
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    Re: What were your first symptoms?

    Quote:
    Originally Posted by VeeJ View Post
    Hi again. For sure, a repeatedly high ANA is something to follow up on, not to mention your joint pain & sun rashes. Have you read the "sticky posts" (permanent info posts) located above the user threads? You could find basic info there on the various lupus-specific rashes (there are actually many, more than just the best-known ones, malar and discoid), on criteria used to diagnose & classify, on good reading resources, etc.

    Then maybe you could visit your library for some loaners? I kid you not, but a single sentence in a borrowed lupus hardcover is what convinced me to try again, with a new and more sophisticated rheum. (It was a sentence about a lupus-specific rash that I'd never heard of before. Bingo!)

    Have you been getting copies of your blood labs, to see which antibody tests your doctor has been running? Feel free to post on those. While we're just patients, across the group, we've sure had a ton of labs...

    Slow dx'es are torture for patients, I think. I have a very close friend who'd been following up on her high ANA's (1:640 and 1:1280) for several years. Her rheum was looking for lupus or RA, I'm guessing from the tests he was repeating. Lo and behold, she had a form of vasculitis instead, and she took a HUGE kidney & lung hit last month, finally getting dx'ed the hard way, in the hospital for days, and in serious shape. I kept wanting her to try a new rheum in the "big city", but no, she was OK with her suburban rheum. Looking back, I wish I'd jammed her into my car and forced her to try someone new!

    If you're feeling stuck in place, maybe you could start researching other possible rheums? I did. I kept a "rainy day list" in file, so when I got a new batch of symptoms, I booked with a new rheum. (I figured my blood labs would be more revealing when I was beginning a new flare, as opposed to being run when I felt normal-ish.) IMO, the teaching hospital rheums may be better at diagnosing the AI's, in that they see more patients, therefore they see lupus and its "close cousins" in all of their wildly varied presentations. Just a thought... Drop a line any time, OK? Wishing you a breakthrough soon!
    Interesting that I also have blood vessels that burst spontaneously, usually in my fingers. It is acutely painful when it happens. I also had a large vein rupture in my arm from an auto inject of contrast dye during a CT scan. And then there are the many bruises. I think this happens to a lot of people with lupus but it is rarely mentioned as a symptom. The ones in eye take about 3 weeks to resolve. I would take a picture of it to document it for your next Dr visit. I agree a second opinion may help if your rheum has been dragging his feet for long on a diagnosis. Would be nice to get some treatment started so you could feel better soon.

     
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    Old 05-19-2016, 05:01 AM   #7
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    Re: What were your first symptoms?

    "39", just curious, did your doctor call your eye episode "uveitis"? It's known to occur in multiple AI conditions, and has some other causes as well. (I was trying to remember this yesterday but couldn't, sorry.) Sending best wishes.

     
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    Old 05-25-2016, 04:29 PM   #8
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    Re: What were your first symptoms?

    I have not been diagnosed yet, but I am waiting on going to the doctor as I am concerned with a bigger health issue and also that the symptoms have become more sporadic (is that a good thing?).

    The symptoms started showing up about 2 years ago where I would have sudden outbursts of BAD hives all over (mainly all over my back). I had bloodwork done with my allergist/immunologist and he told me that I have an elevated ANA in my blood. I was only 27 at the time and was told that I am too young for anything so I was diagnosed with chronic idiopathic urticaria. After taking some allergy meds, the hives would go away and they disappeared altogether for a while.

    Recently this year however, I have noticed that I am getting hives around my joints (particularly fingers and wrists swelling up and looking a bit red). Also they become stiff, but not painful. I also get some hives but take some Claritin to relieve it. I have been worried for a long time that these are the beginning stages of lupus but have not thoroughly had it checked out as the symptoms do not show up consistently.

    Has this happened to anyone? Should I be concerned?

     
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    Old 05-25-2016, 06:51 PM   #9
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    Re: What were your first symptoms?

    In general, hives for no apparent allergic reason, are frequent in lupus, and can even be a presenting (early) symptom. It is a sign the immune system is reacting to something (itself?) and can be very distressing/ complex, and complicated to figure out. So yes, hives can be an early manifestation of lupus, and 27 is not too young to be showing these signs. Lupus can occur in kids as young as 3 (not including neonatal lupus) so anything should be considered and not dismissed.

     
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