Perniotic (chilblaine)Lupus

Hello, im a 34 yr old female and i was DX with SLE in May 08, I have just come to terms with that but after a consultation with my specialist on Monday, i have also been DX with perniotic Lupus. He made the DX because my hands and feet are like blocks of ice, regardless of the temp, I have red patches on my elbows, knees, calves, my fingertips are going red around the nails and the half moons on my toenails are a redish purple colour. I do have some pain and numbness but i thought that was Raynauds. I am searching like mad on the net for info but this type of Lupus doesnt really get much of a mention, i dont think its very common. Can anyone tell me anything? Does anyone else out there have this? What can i do to help myself besides keep warm, i no it can cause ulcers etc and i really dont want that, this illness has taken enough away from me already.
Thanks x

[zmombomb]

Try getting into Lupus.org and see if they have info there.  Otherwise call the lupus foundation of america and ask questions.  If they don't have the answers I would be surprised.  

[zmombomb]

go to http://www.thedoctorsdoctor.com/diseases/chilblains.htm

[SL15]

Hi Teezie, you are not alone. I have CL on my toes and it's had a detrimental impact on my life. For a year my toes were treated for various infections until the doctor told me it's probably CL. My feet are frequently cold just like you said, even when I am inside a heated room. I was given a steroid cream called Clobetasol, I have just started using it so I don't see any difference yet. On the internet I found a report on a case of CL that was treated with fluocinolone acetonide (cream) and chloroquine (anti-malarial drug) which lead to 70% decrease of the CL in the patient. CL can be a precursor to systemic lupus, and there is no cure. From my own experiments with natural cures I noticed that rubbing vitamin E oil into the affected skin is beneficial. Keep your feet warm, exercise and try to maintain good blood circulation in your feet. Warm foot baths may help too.