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Old 05-11-2011, 10:48 PM   #1
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Amayat HB User
Unhappy Vasculitis Getting Worse (Lupus, Raynaud's, Sjogren's)

It's been a while since my last breakout (a month?), but now it's the second worse I've ever had.
I was diagnosed several years ago with Raynaud's Syndrome. When my ANA came back extremely high, I was sent for further blood tests, an echo-cardiogram and a pulmonary function tests. It was discovered that nothing was wrong with my internal organs, but I had severe anemia.
About two years later, I was diagnosed with Sjogren's Syndrome and Vasculitis. My dermatologist did a skin biopsy on the petechia rash on my legs and it came back non-conclusive
I have dry eyes/mouth and large red/purple patches from my thighs to my feet.

The worse breakout I ever had was at a rally where I stood for at least 5 hours straight. I had nothing to eat/drink that day until 8pm (except for a granola bar and apple cider). The rash I had was solid from my thighs to my feet. I haven't been under such extreme conditions since.

My doctor has put me on nothing other than Plaquenil and an Iron Supplement. My dermatologist put me on some topical stuff for my legs, but this make them turn into scars instead of patches.

The outbreaks on my legs keep on getting worse whenever they happen. It is common for my legs to become fatigued extremely easily during an outbreak. I also have general fatigue because of the anemia. The rash is often itchy and painful and cause swelling in my feet and legs. I can't even wear my shoes sometimes.
Should I go back to the doctor? And to my rheumatologist or my dermatologist? Is there any way that I could relieve my pain and swelling at home before I see my doctor. Is there a way to reduce the redness and/or the swelling at home?

I am now only 19. I was first diagnosed around the age of 15. I would really appreciate any and all advice that you could give me. Whenever this vasculitis appears on my legs it really scares me and it's hard to find anything about my conditions online.
Thank you!

Last edited by Amayat; 05-11-2011 at 10:55 PM.

 
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Old 05-13-2011, 11:28 AM   #2
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mchavers1 HB Usermchavers1 HB User
Re: Vasculitis Getting Worse (Lupus, Raynaud's, Sjogren's)

There is being a lot of research on this very prevalent antioxidant that is found in every organ, cell in your body. This one is the most important one in supporting, detoxing, from a intracelluar approach. It has been studied since the 1800s.

This powerful antioxidant you may have never heard of is working hard to keep every cell in your body safe from free radical damage and oxidative stress. That's a good ting because oxidative stress has been associated with more than 74 major diseases and disorders.

I can send your some research, this is in relations to what you are experiencing.

 
Old 05-29-2011, 06:30 PM   #3
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KnucklesD HB User
Re: Vasculitis Getting Worse (Lupus, Raynaud's, Sjogren's)

check out Behcets disease. This is what I have and it can cause skin ulcers which is what it sounds like you have.

 
Old 06-16-2011, 10:31 PM   #4
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markincleveland HB User
Re: Vasculitis Getting Worse (Lupus, Raynaud's, Sjogren's)

The Cleveland Clinic center for vasculitus is one of the, if not the best, in the country, check it out on their website. My advice with any serious chronic illness is to see the yop expert you can get to,

 
Old 09-06-2011, 07:56 AM   #5
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Re: Vasculitis Getting Worse (Lupus, Raynaud's, Sjogren's)

Amayat,

sorry to hear about your problems. Has anyone been able to say which one of your conditions causes the petechia rash? Does it come and go? I have an extensive """permanent"""petechia on my abdomen. Vasculitis has been suspected (though not because of the petechia) but recently ruled out. My ANA is positive. I do believe it has to do with some type of disorder in small blood vessels just under the skin. I have fibromuscular dysplasia. I have not seen a dermatologist for this and have had it for a few years now.
I hope you will get yours looked after and that you will find a good specialist.
Best of luck,
flowergirl

 
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