MaryF11 years ago

Has your rheumatologist ever checked you out for Hughes Syndrome, a percentage of those with Lupus have this as well, and often the skin condition you describe appears! Mary F x

Purpletop11 years ago

Yes, he did twice already but tests ok, I don't have it. I'm so worried now, I've just been reading about sneddon syndrome and I'm petrified that's what it is. Self diagnosis is never a good idea but doctors don't seem to do much better when it comes to this, it seems. I wonder if anyone on the forum has this and what their experience is like.

tracynoe11 years ago

I have livedo reticularis along with vasculitis and CTD I am on MMF and steroids and even with treatment I still have the rash although it is not as bad as it was before treatment it covered my body now it is worse on my legs hands feet and arms depending on how I am.

Purpletop in reply to tracynoe11 years ago

Do you have any neurological symptoms? I have headaches and severe pain behinfpd my eyes and sometimes days when I am dizzy. I'm so scared of stroke though my blood pressure is ok, I'm worried that this thing might be something more complex.

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tracynoe in reply to Purpletop11 years ago

Yes my right side is weaker than the left as found by a neurologist about 6 years ago my MRI shows white patches probably caused by vasculitis and a pituitary cyst. Further scans have showed no significant change to patches so treatment is working I don't see a neurologist anymore Rheumy deals with it. I go to the eye clinic as I have double vision flashing lights a some peripheral vision loss of unknown cause and dry eyes, shirmmer test produced no tears in eyes and left the paper dry so I use drops. I have stopped worrying about it as there is nothing I can do and stress will makes things worse. I also get dizzy to the point of falling over.

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cathbw11 years ago

Hi Purpletop... and everyone else. I was told 3 years ago that I had livedo reticularis (amongst a whole bunch of other stuff) and like many other things, it has never been mentioned again. I find it infuriating that certain things just seem to get brushed aside and forgotten about. Which leaves us to rely on the internet and frighten ourselves witless. XXX

Keep smiling x

Purpletop in reply to cathbw11 years ago

I am well scared after reading about what this thing could mean, particularly when I do have severe headaches and eye pain and sudden bouts of dizziness which if I am to believe the Internet means something awful. Have you been referred to a neurologist? I am probably going to ask to be referred to one to assess risk of stroke and do a brain MRI to be sure.

This is a nightmare and I don't seem to be able to wake up...

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tracynoe in reply to cathbw11 years ago

My livedo reticularis is commented on and noted every time I go and is very often pointed out to students too as it is a sign of disease so it is monitored.

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Purpletop in reply to tracynoe11 years ago

You are very courageous, I'm at the panic level at the moment. How long have you had this??

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tracynoe in reply to Purpletop11 years ago

7 and a half years. I started with tracheitis and a bad chest infection and never picked up just went down hill was passed from one consultant to another and the only thing they could agree on was I that I was very ill but none of them knew why until I met the Rheumatologist and she said straight away that I didn't have one problem I had lots and had probably had it all my life with it clicking on and off at various times. I have had livedo reticularis rash all my life I just didn't know what it was until she told me.

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Purpletop in reply to tracynoe11 years ago

Has anyone considered Sneddon Syndrome with all your neurological symptoms and livedo? I see it mentioned in connection to live do, was just wondering.

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Jinny11 years ago

Yes i also have Livedo Reticularis,,was Dx about 8years ago long before Lupus and was told at the time nothing could be done and no treatment!!August 2011 Lupus Diagnosed along with the Livedo then been labeled Vasculitus,,i have also suffered chilblains most of my life(i am 48) and all this is related!!I am very purple and the net like rash more pronounced when i cold,,which is often,,if i not cold i just look a mess then with the Lupus scaring and constant spots!!Lupies we sure now how to be colourful!! lol xx

Jinny11 years ago

P.s Do not unduly worry yourself over this,,getting the circulation the best it v´can be will be beneficial for your body and keeping warm so the blood flow is better,,the mottled look you see is actually stagnant blood in the small capillary vessels under your skin,,there is no treatment to cure this ,,the same as our Lupus,,they may prescribe meds to help blood flow,,i take Nifedepine for the Chilblains ,,i think does help.If i were you id ring and ask for an earlier appointment,,voice your concerns and state you really must see the consultant soon.Hope all goes well .xx

Purpletop in reply to Jinny11 years ago

Thank you for responding. From what I read online it seems that the treatment to manage it depends on what triggers it. If it is inflammation, then the lupus medication will keep it in check, if it isn't, then that is problematic as there is no treatment, really. My concern is around the fact that this is only a symptom of vascular issues that appear in the brain at the same time. I don't like the sound of the blood vessels in my brain being inflamed or blocked, I'm worried about stroke!

Did you experience any neurological issues with it?

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