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anyone have experience with lupus pernio?

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Posted 2/24/2010 5:52 AM (GMT 0)
Diagnosed with lupus pernio today. I have discolorations (purple-ish) and painful, open sores on my knuckles that won't heal (3-4 weeks now). I have full-on sores on 4 fingers and 3 that look like they're coming on and are tender to the touch. The dermatologist told me that it's an issue with circulation, related to my Raynaud's. He prescribed a beta-blocker (pill 3x a day, ugh) and steroid topical, told me to avoid exposure to cold (below 50 degrees was his estimation) by wearing gloves and bandages. I can't wait to be known as GloveGirl. Anyone else know these pains? Thanks...
Posted 2/24/2010 6:29 AM (GMT 0)
Hi and welcome! I'm very sorry about the circumstances which have led you here though! sad

Lupus pernio is actually a skin manifestation of sarcoidosis.....which is almost all I know. I don't actually have it. It's possible someone here will respond who does know more. I hope so!

Sarcoidosis can range from mild to quite serious. Here is a link to a blog written by someone with the serious kind:

chronicville.wordpress.com/

I love this blog; Rebecca is a wonderful writer and she will respond to you if you try to contact her, as long as she's able to (she's been very ill recently).

Good luck! Please keep us posted!
JoAnn
Posted 2/24/2010 5:17 PM (GMT 0)
I had never heard of lupus pernio. That's what i love about this site. I learn something new every day. According to what i found online, JoAnn's correct. I hope the treatment helps!
Posted 2/25/2010 2:01 PM (GMT 0)
Hi

I am sorry you are suffering from this very painful and handicapping condition

The terminology is rather confusing as lupus pernio is certainly used in connection with scarcoidosis, not lupus, but also with lupus and related connective tissue diseases and conditions such as Raynauds and scleroderma. Chilblain lupus seems to be a similar term restricted to lupus etc. A major difference seems to be that the pernio may appear on the face and nose in sarcoidosis but doesn't in those places in lupus etc.

http://www.dermnet.org.nz/reactions/chilblains.html

As kids years ago we often suffered chilblains on the toes after playing in snow and then toasting our freezing feet in front of an open fire thus stressing the blood vessels to the max.
I hope you can get yours cleared up quickly. Watch out for infection a cream called Bactroban could help avoid infection
depending on the case and existing medication an additional general disease modifying medicine might help

HTH
BB
Posted 3/1/2010 3:59 PM (GMT 0)
have you tried lidocaine/prilocaine for painful sores..i too had painful sores on my hands but mine were the tips and not the knuckles.. beta blocker did nothing for me and neither did the nitrobid paste.. try also soaking your hands in warm salt water and try to keep your fingers out of your nose :O) mrsa is colonized in the nose and the last thing you need is a mrsa infection..i have had 2 amputations from sores that didnt heal and if i knew what i know now i would still have my finger and toe.. of course mine was from raynauds.. try searching online or at walgreens or walmart for something called hot hands its little packets that get warm and i inserted them into my gloves.. if you do get the bactroban use it.. also swab with a qtip in your nose as well.. waering gloves isnt so bad but make sure you soak your hands twice daily in warm salt water too.. the salt has a healing agent..
Posted 3/1/2010 5:57 PM (GMT 0)
thank you for the advice. what does the bactroban do?
Posted 5/12/2010 12:35 AM (GMT 0)
Hi there, I looked to find a way to send a personal msg cuz your post was awhile back. I suffer from lupus pernio as well but mine are on my toes. I do have a good line up of meds that are working very well with the pernio, but I might ask if you may also have perpherial neuropothy? It seemed to me when I was taking the medicine for the pn my pernios healed and I haven't had any new sores. I do notice I get them when I get into a hot tub and my feet are numbish feeling. I do take nifedical xl 60mg for the raynauds and amitriptyline at bedtime for neuropthy pain, and plaquenil etc...
Michele
Posted 5/13/2010 1:46 PM (GMT 0)

Don't worry about becoming "Glove Girl."  I have to wear them all winter and carry them with me when I go to overly air-conditioned rooms in the summer.  Only a few people have commented on them.  My husband suggested I get flesh-colored gloves so it would be less noticeable.  Some people say they never realized I had them on.  Those who say things like "Are you cold or something?"  I just tell them I have a medical condition that makes me cold all the time.  People don't generally want to hear, "Oh I have lupus which causes Raynaud's phenomenon which makes my fingers turn white, blue, and then red.  If I don't keep my hands warm, I might need to have my fingertips amputated." 

Only once was I offended.  I went to restaurant and as I was passing by a booth, I heard a man say, "Gloves?  Good grief.  It's 70 degrees outside."  I admit it did bother me, and I wanted to say "I have a disease, you idiot."  But I didn't...

Posted 7/24/2010 1:00 AM (GMT 0)
thanks for all the replies. summertime has been better for the sores... i have had them but they have been MUCH less frequent and painful. the only time i've been wearing my gloves is in the grocery store... why is it always so cold in there?!
Posted 7/24/2010 1:13 AM (GMT 0)
"Are your hands cold?" or "Are you cold?"
(Addressed to us wearing gloves, hats, coats, etc when others might think it's "out of season")

"Not anymore, thanks."
(Calmly said by me on many an occasion. Sometimes I substitute: "I have a broken thermostat", but that can only be used when you think the questioner might have a brain or a sense of humor.) (And if it's the third time in one day, I'm liable to think loudly "None of your business")

I mean, I don't ask why they eat with their mouths open, do I????!
Posted 4/5/2011 4:41 PM (GMT 0)
Hi, I too was diagnosed with Lupus Pernio 3 years ago. As my chest xray and bloodwork was clear, sarcoidosis or any other AI disease was not suggested. Even though the dermie said she found 'granulomas' in the skin biopsy.

To date, I have not been officially diagnosed with anything else but Im in the process of seeing a rheumy as alot of new and very strange symptoms have evolved since....which all seem to be lupus related with out the positive bloodwork.

Im sure I have Raynauds, as my hands have always been very cold and clammy, turning purple, white and red according to temp. Ive just never been diagnosed with it. I did not say this to dermie as I thought it was normal!!

The pernio has now returned after 3 years along with a host of all these other symptoms. My nose is very red and always cold too ...I got an unofficial diagnoses of roseacea from my gp. (He just said it looked like roseacea) I have a milder version on my toes. My hands seem to have a different appearance to 3 years ago though...more redness and inflammation this time over knuckles.

Im wondering if it is connected to my other symptoms and if it is all autoimmune related.
Posted 4/5/2011 6:33 PM (GMT 0)
do you get sores anywhere... fingers/toes?

I was recently prescribed Biafine topical for mine and it really helped them heal faster

Hopefully the warmer weather will keep them away... for now anyways
Posted 4/5/2011 7:31 PM (GMT 0)
Hi Kimberly...just my fingers mostly...i have small red spots on toes now too but they are not sore or itchy. Dont know if the rash on my nose is related to roseacea, raynauds, or lupus if i have it.

Mine started end of August/beginning of september the first time...so it wasnt even cold! And the really cold weather over the winter didnt seem to affect them....they just appeared again after 3 years around the end of february this time when the weather would have been a lot milder.

So its all very confusing!!! I would have very cold hands most of the time anyway...so much so, that my children dont like me getting them dressed incase my hands touch off their skin!!! my hands would subtley change colour but would never be real noticable like some pics i see on the net...I never heard of Biafine...I used dermovate and it seems to help the inflammation some bit
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