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Thread: Vasculitis

  1. #1
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    Default Vasculitis

    Hello my fellow lupies!
    So I am experiencing vasculitis..which is the inflamation and destruction of blood vessels. I of course have the daily joint pain, but my main complaint is my hands and feet. I have this vasculitis so bad that my fingers are spliting, cracking, covered and becoming infected. Not to mention it hurts to touch almost everything. My feet are doing the same thing, but mainly i can see my blood vesseles at the surface. My skin is sooooo sensitive that it hurts to walk. I know it is just from the lupus, and if I wanted to knock it down i could up my steroid dosage, BUT who the heck wants to be on more steroids!? DO any of ya'll have this also? Or any tips how to ease this? I am hoping that when winter is over maybe it will feel better.
    -Sarah

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    Get in touch with your doctor and get something right away! My fingers and feet crack, too, but I can manage it with lotions though I have many times I'll find blood spots on the arm of my chair because my skin cracked again. I wonder if vitamin E would help? And you're right, good ol' steriods certainly help but they kick you in the bottom the whole time you're using them!

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    Sarah2010, you doin' other medz? If so, like serand4 says, call your doc(s). I forget what the stuff was they put me on a few months back, but it looked like I had a *really* bad case of chicken pox all over, and it was the blood vessels bursting. The first reaction from the doc when he saw me was "are you allergic to something?"... lolol - "Duh, ya think maybe?"... Plain ole steroids for me again... As for the hand and foot pain, no change... oh well...

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    My aunt has this - I agree, call the doctor. If they haven't seen you lately they will probably want to do a sonogram of the blood vessels in the legs and arms. I had that done when the ruled vasculitis out - it was very easy procedure.
    As long as this body works, I am going to enjoy life to the fullest for each second of every moment that I can.



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    Thanks for the tips gang. I have an apt n the 24th. So we will see what the good ole Rhumy has to say.
    Peace and well wishes to all.
    XO
    -Sarah

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    Jmail,
    Was it painful for you in the areas that had broken blood vessels? My hands and feet hurt SOOOO bad!!!!

    Serand4,
    I have been using bag balm for my external cracking etc. and that has been helping. If u havnt tried it, i suggest it..it has an antiseptic in it too.But the real pain is internal.

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    At first, I thought I was having a flare-up of shingles (sprelling??), but the spots weren't "connected" like shingles, they didn't get any bigger than like a cigarette burn, but most were like a pimple gone bad, black & blue, with some being like open sores. And yes, if was painful, but not terribly so. When you think about it, it's your blood vessels basically "exploding". The scary part is that you have blood vessels inside of you too, feeding your organs... It's not something to mess with and is something I would consider almost an "emergency" type situation - just my opinion. Mine started on my feet and legs, and worked its way up. I do not remember the time-frame, but it was over several days it seems. When I called the doctor's office, they had me come in that day... We went back to just pred after that. I've still got a few spots that appear to be bruises from it, but it's the veins under the skin. Looks like vericose veins, only little tiny things. I still get stuff like that on my hands & arms occasionally, but the docs have seen those, and they all say it's not vasculitis. Here's a pic at wikipedia: http://en.wikipedia.org/wiki/Vasculitis Mine wasn't near as bad as that. More like what was on the lower calf, only with some bigger spots.

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    Hi Sarah, And i have the same problem as you with the vasculitis and always doctering it.
    I am diagnosed with cns vasculitis where it has gone to my brain but i also have it attacking my skin and fingers, toes etc. Here are some of the tips that i found help mine, Also i have a photo on my profile of how bad and ugley mine do get when i was researching the net to see what in the world was going on with my finger's, so when i got diagnosed i put a photo of mine on my profile in hopes it may help someone else, with the same problem that may be like me and not know what it was. I have a dermatologist that i ask for samples from & he gives me samples of some rx sample creams, the newest one that helped the most was called Hylatopic cream
    i put it on twice a day and at knght i put it on then put on thin gloves and sleep with the gloves to let it asorb in.
    BUT the best mixture so far that has helped the most, like you mine fingers will bust and crack
    open and get infected and bleed and be so sore i cant hardly touch anything. I rotate throughout the day with these, First neosporin for the infection, then Extra virgin 100 percent
    Coconut oil that i get at the vitiman store or health store, i use the barleans brand it
    looks kinda like hard say like crisco but when you scoop out the coconut oil and rub it in your skin it melts with the heat of your hands and the coconut oil will asorb in your skin better and go tto the deeper layers of dermis on your hands and skin. I rotate a few nights of sleeping with gloves and coconut oil and a few nights with rubbing pure extra vitgin olive oil on
    my hands and wear gloves to sleep in along with the neosoprin first.
    The coconut oil is also good for your hair i soak my hair in it also for an hour and scalp then wash it also you can eat 1 teaspoon a day of the coconut oil witch i do says it supports the immuine system. You can research it on line thats how i found out about it and saw it on the doctors show of the many bennifit's.
    I just got ming healed again where they had split so and were infected for weeks!

    Hope this help's you a bit, Wishing you the best of luck with your hand's and feet,
    I surley know what your going through!! ~ DIANE ~
    ~Where Hope Grow's, Miracle's Blossom~
    Diagnosed,
    (CNS) Vasculitis, Lupus, Neuro-Behcet's, Raynaud's, Fibromyalgia, Diabetes, Earley M.S., Buerger's Syndrome.

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