hello all....have been noticing that my version of livedo reticularis has been flaring up & down much more since i stopped daily hydroxy last feb (when my head of rheumatology wrote to me to stop hydroxy but continue myco while i was being referred to immunology for hypogammaglobulinaemia & suspected primary immunodeficiency)
i've had livedo reticularis for many years before my infant onset lupus was rediagnosed & treatment began 4 years ago, but it's never been quite as vivid as it has been since last feb when i stopped hydroxy. the characteristic rash pattern is there daily on my knees, thighs, abdomen & lower chest. the markings are more vivid during infections and when i'm feeling extra fatigued and my chronic neuro cerebral symptoms are extra bad.
i have taken pics and will give them to rheumatology in clinic this coming week, but i just wanted to ask how others' livedo reticularis behaves...e.g. is it always there but is sometimes paler than other times etc?
and also, what have your consultants mostly attributed your livedo reticularis to (e.g. sjogrens/siccs, vasculitis, or whatever)?
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Barnclown
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Mine flares when I flare and my rheumatologist has definitely put it down to lupus, not APS, Sneddons or anything else. You sound like you're flaring, when are you seeing your rheumy, you must restart hydroxy soon and maybe another taper?
I hope to be able to restart hydroxy & pred tapers soon...i have my 6 monthly rheumatology clinic this Monday when we'll discuss everything inc my meds & this LR. Maybe they'll have already had a sneak preview of immunology's conclusions re the big battery of specialist blood tests immunology started in mid may + any conclusions drawn re the character of my immunodeficiency (which I am daring to expect will be explained at my next immunology clinic mid July)
So, is your LR ever present to a degree, i.e. You can even see LR faintly when you're not actually flaring....and with the LR showing more vividly when you are actively in a flare?
As ever, many thanks for your help understanding LR Purpletop!
MIne is there all the time it varies in how noticeable it is and like you is always worse when flaring and v. tired. My knees are bad all the time and getting worse hands too always seems strange to me that I can have a raynauds attack fingers go white and rest of hand is in full LR mottle.
Yes: that is the really strange thing: I know what you mean!
Thanks Tracy....I've had raynauds since childhood, but LR came on later, although, even so, by now, at 61, I've also had LR for years....always I've tried to talk myself into thinking both my raynauds & my LR were relatively mild...I just sort of wanted to feel it was all "normal". And i got away with that until the past 4 years when things got even worse & more vivid. But most recently the LR has been flaring even more vividly. So I've taken these pics of my LR in full throttle (good phrase). My feeling is, I'd better make sure my Drs know about it...and see these vivid pics.....because usually they don't look at that part of my bod in clinic...and on Monday, who knows, perhaps the LR pattern won't be so vivid.
Am v glad to know that the way the vividness of my LR fluctuates doesn't mean I shouldn't mention it to rheumatology...I think LR can also be seen in sjogrens (I'm thought to have seroneg), and vasculitis (which I'm being watched for)
My Livedo is there all the time but more noticeable when Raynauds is not good. It's been so much better since taking Adalat 20 mg daily. I just have it on my hands, feet and legs, yours is much more extensive!.
Good to show Rheumy's the photos and I'm interested what they say about LV. Good luck for your appointment. X
It's v interesting that LR affects such different parts of our bods! I'll google Adalat now. As ever, am hugely grateful for your guidance & insight.
Take care XO
PS just discovered Adalat is also known as nifedipine...unfortunately only a few days on nifedipine for vasodilation to treat raynauds caused all my lupus & vascular symptoms to go ballistic....especially my erythromelalgia....so, even though my LR is always more vivid when my raynauds is active, vasodilation is problematic in my case....BUT thanks to your reply, I now know to remind rheumatology when we discuss my LR & raynauds etc, that nifedipine affects me negatively
Hi barn clown, mine is very visable all the time, the patteren deepens even more when like you im feeling fatiged it going into over drive the only place its not so visable is on my neck, diff in temps also make it go crazy. Its a strange thing i describle it like a honeycomb patteren all joined up. X x when im in a fare it seems to go darker x
YES: honeycomb pattern is a great description! Thanks willow! I'm now feeling much more confident about discussing my LR tomorrow with rheumatology. Am so glad you replied. Take care xo
Hi barnclown, when i went to my first rhumatoligist i had to undress and she looked me over from head to foot looked at my joints as im hypermobile then looked at my skin and said you have a defined LV marking all over your body, i remeber saying thats just cornedbeef skin as im cold then she explained it in depth and said with a giggle its not corned beef skin like some experience in the cold because LV has a very distinct pattern she said if you look at the LV you see a honeycomb pattern this is unique to livedo rectalaris. Sometimes we use the term lace like but she calls it honeycomb the pattern joins together with no gaps. I was amazed xx good luck tomorrow, im also seeing rhumatoligy tomorrow lupus clinic. Oh the joys isnt it. X
There it is! Your first rheumatologist sounds good! And her explanation of the diff btw the corned beef pattern of normal cold skin & the honey comb of LR is interesting
At my diagnosis rheumatology appt I was physically examined & did get the hypermobile confirmation, but I don't remember going into LR. My rheumatologist is brilliant. And tomorrow I'll get a reaction to my LR. You've been a big help willow...will be thinking of you at your clinic tomorrow too: good luck! XO
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