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Biomarker for Diffuse Scleroderma skin has been discovered!


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Advice please on treatment


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#1 summer

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Posted 25 January 2010 - 04:08 PM

I have livedo Reticularis,and am just wondering for those
that have it with Scleroderma, what is the usual treatment.?

I have already seen a Dermatologist for a different problem.
I asked him what the netlike spreading was on my legs, and
he did confirm that I had Livedo Reticularis. He didn't seem
very concerned about it and sent me on my way. It is only now,
that I have researched it further, that I am a little concerned.
I am at a high risk of blood clots, this worries me, as I have a
sister that had a stroke at 40 years old. And, an Aunty that
died in her sleep at 39, from an anyurism (sorry about the spelling).

I'm hoping that someone can offer some advice.

Kind regards
Summer

#2 Jeannie McClelland

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Posted 26 January 2010 - 03:17 PM

Hi Summer,

I also have livedo reticularis with scleroderma. My rheumatologist tells me it is worsened by cold and has not offered any treatment for the livedo itself. It's my understanding that if it is secondary to another disease (like scleroderma or lupus), treating the underlying cause is usual. I try not to let my legs get cold (hey, with Raynaud's I try not to let anything get too cold!) and I also try to make sure to get up and walk around frequently. If I'm going to be sitting for a long time (car or plane trip), then I wear compression stockings.

I think with your family history, it might be a good idea to discuss this with your family doctor. He can check your clotting time with a simple blood test, monitor your blood pressure, discuss other risk factors, etc.

Warm hugs,
Jeannie McClelland
(Retired) ISN Director of Support Services
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International Scleroderma Network

#3 MaryFanPhilly

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Posted 27 January 2010 - 05:25 PM

Hi Summer. I too have livido reticularis... it sounded so awful that I made the rheumatologist write it down so I could research it. My legs are very red on the thighs, and very white below the knee, plus all the veins etc. Jeannie is right, so far as I know... the worst thing about it is that I can't wear shorts anymore :-( Circulation is one of those things we have to deal with on a small and large scale, so please take it seriously and keep a close eye. Be well, Mary
Diffuse sclero; diabetes; hypertension; GERD with Barrett's

#4 Shelley Ensz

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Posted 28 January 2010 - 04:07 AM

Hi Summer,

I have livedo reticularis, too, from time to time. It is noted several times in my medical records but at the visits the rheumatologists didn't even make a verbal comment about it. I think it is considered to be more of a clue or a symptom but not, in itself, anything that requires treatment. The focus would be on treating any underlying conditions (scleroderma, lupus, antiphospholipid syndrome [APS]) and on whether or not you currently have a clotting condition that requires treatment.

And actually, I hardly ever notice it myself. It centers around my knees/legs, which I usually have covered with slacks. The livedo can blossom in very chilly exam rooms when I don't have enough blankets. I know now to always try to remember to ask for extra blankets for exams, if the room feels chilly to me (which means the room might be perfect temp for anyone else.) So, staying warm is key for me and is all the treatment I need for that particular item.

Ask your doctor about it, particularly about whether it might be good to run any additional tests, such as the clotting stuff or even APS antibody tests.
Warm Hugs,

Shelley Ensz
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International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#5 Lucy H

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Posted 03 February 2010 - 08:39 AM

Hi. I also have this discoloration on my thighs & back of my knees. My rheumotologist has indicated that it is related to the circulatory issues associated with Raynauds & he put me on a calcium channel blocker. It has not really helped the discoloration and my concerns are mostly cosmetic. I was not aware of any other dangers associated with livedo reticularis. Are there other issues aside from the visual concerns? I hate to sound vain, but I am truly hoping that it will fade. I am self concious to wear a bathing suit or skirt in the summer. Has anyone had it go away or get less noticable with time, change of temp or meds? Since my doctor didn't seem concerned I have not been too worried about it aside from being upset that it is unsightly.