Question

[Hollylewis]

Any one with Livedo? How long have you had it and how long did you have it before your onset of other symptoms?

[jessielou]

Hi Holly

I have always had the livido rash especially after cross country running as a teen. Had migraines back then too, miscarriages through the years, then a dvt and pe's in 2007.

Other symptoms since.

The difficulty with Hughes is we share common symptoms, some will have more than others. Some less. We all vary so much hon!

How you doing?

Hope Christmas been good!

Take care gentle hugs love Sheena xxxxxx

[CanaryDiamond10]

Hi Holly! I'm covered in it. Where isn't it? It has always been. I cannot remember not having it to some degree or another. When I was young, the very minute I hit sun I began to freckle all over my body, but my face especially. To top it off, in my very young teens, I got the butterfly fly purple rash on top of livido and the lupus (I test negative)butterfly rash on my face. It works like a little barometer. The worse the rash and the purple mark on my face, knees, hands the worse I feel. I always have it. I guess I have trained myself to look right through it. I guess since I'm not the one who has to look at it, it never bothered me all that much. Really. I pay no attention except to use it as a forewarning signal. If it gets too terribly bad I know I should beware of flare. Of course, fickle disease that it is, you can't depend on that. As far as I know it ISN'T a barometer, but it just seems that way to me.

Good luck Holly. Don't let it bother you. There are just too many more important things to worry about. I hope Santa was good to you and that the New Year will be too. Take care.

Hugs, smiles and a Happy New Year~

Canary

[Leigha]

Hi Holly,

I remember when in my teens and embarrassed in a bathing suit because my legs and arms were all mottled. Didn't know what it was and wasn't diagnosed with APS for over 40 years. Don't have lupus, just primary APS.

Still have the livedo reticularus, sometimes it is worse than other times. Don't know why, cold weather does seem to affect somewhat. When I lived in Hawaii it didn't seem as bad. But it isn't just weather.

It's just something I live with and am not embarrassed by it at all. When we live with health problems, this is so very minor! Hope this helps.

Leigha

[Hidden]

Hi Holly,

I got it just before i started with warfarin in 2011. My first TIA/stroke was in 2002. Then after my operation (Hyperpara) I got worse in 2006 - 2008.

Happy New Year to you!

[SueLovett]

Hi,

I have had it as long as I can remember. x

[Jade]

To be honest I didn't know I had something relevant, just thought that was how I was. It wasn't until a doc at St T's made a big thing about it that I realised it was significant in addition to my other symptoms. I do know people who have it and are very healthy.

[jadams]

2-3 years ago I noticed purple vein/bruise looking things on the back of my arms when getting ready in the mornings. I specifically remember asking my husband about it several times. (Which I now know is Livedo)

I have always had bad headaches/migraines and had been complaining about memory issues for a couple of years.

Wasn't until I had a stroke Sept 2011....which led to tons of testing since I was only 42, that I was diagnosed with Primary APS......

At least everything makes since now.....