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  • Vasculitis?

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    Old 11-21-2015, 05:32 AM   #1
    LScrutton's Avatar
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    Hello, I am new here. I have been searching all over the net for more information on Vasculitis, particularly Giant Cell Arteritis (Temporal Arteritis) it is not very common and even more exceptional in someone of 35 from what I have been able to find. Just looking to find out if there are others around with this diagnosis as I have so many questions and having a difficult time finding much information at all, and certainly have had no luck finding anyone to "compare notes" with.

    I was diagnosed 4 weeks ago, after a long year of hospital visits, specialists and tests. I started with chest pain and shortness of breath, tachycardia, a pulseless left arm. THey did a complete cardiac work up and a complete pulmonary work up to no avail. 4 weeks ago I ended up with MASSIVE temporal headaches, nausea, vomiting, dizziness, weakness, tremors in my hands, ZERO appetite, rapid weight loss. My doctor who is very good, got me in to a surgeon the same morning for a temporal artery biopsy and the diagnosis was made. I am on 60 mg of prednisone a day currently, and meet with my doc again Monday after a few weeks of doctor vacation. THe vision in my right eye is impacted and somewhat blurry, so i'm also seeing an eye specialist for monitoring of that and December 11th we'll discuss glasses to try to help my eye function better, it gets tired easily . From what I have been able to find out ALL of my symptoms including the chest pain shortness of breath and the Raynuad's I developed over the winter and the pulseless left arm could ALL be connected to this diagnosis. My Grandmother had Lupus SLE and her very first symptoms were vasculitis, but my doctor said to me three weeks ago, it's like you have Lupus, without having Lupus.... my ANA is negative. OR it was when they tested it last 18 months ago.

    Just looking to chat with anyone who is also experiencing vasculitis, I know it is uncommon so I am not thinking there are a lot of us. Thanks in advance <3


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    Old 12-11-2015, 05:08 AM   #2
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    Re: Vasculitis?

    Hi & welcome. I'm sorry for your problems and your dx. These conditions are difficult enough, esp. rarer ones where it's hard to find fellow patients. (I have only lupus---sorry.)

    But I want to share something I remember reading, years ago, on the lupus board. I recall that a woman's doctors initially thought lupus, then started considering giant cell arteritis due to her worsening vision. Anyhow, that led to discussions of how lupus is diagnosed. We all knew of the 11 ACR criteria, where you generally (not always) must meet at least 4 to sustain the dx. But there's a second set called "alternative criteria", a list of things that occur earlier in life in people who later develop lupus. You might find those interesting & useful. (Both sets are in a "sticky post" on the lupus board.)

    As for systemic lupus with negative ANA, I think it's very rare, probably less than 3-5% of all SLE (estimates vary). The author of one hardcover* I keep on hand notes that virtually all of these patients are positive for anti-Ro & are extremely photosensitive. (That was me, btw: negative ANA, positive anti-Ro, and years weird nonscarring annular targetlike lesions which turned out to be one of the less common lupus-specific rashes.) *You could find this hardcover in most libraries.

    What sealed my dx: lupus band test (LBT), a special type of deep-punch biopsy performed in two steps. The first is the usual thing, looking under the microscope for tell-tale cellular changes. The second is the tricky part, where various stains are applied to see whether linear bands fluoresce. If such bands occur for all 5 immunoglobulins being tested for, the certainly of lupus is > 99%, because lupus is the one condition in which these bands are seen. The test is tricky: it requires a very good dermatologist or pathologist or dermatopathologist. (Mine was done at a Manhattan teaching hospital.) One hardcover author does an excellent job explaining the LBT.

    I agree that it would be valuable to know whether or not you have lupus. Yes, the meds for vasculitis and lupus can overlap (e.g., steroids), but most lupus patients on steroids today are ALSO prescribed an antimalarial because antimalarials have been shown to be steroid-sparing. And, of course, knowing would put everyone on the lookout for the problems associated with SLE...

    Good luck at the eye doctor. Let us know how you made out, OK? Sending warm wishes! Bye for now.

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