anyone have experience with lupus pernio?

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

Regular Member

Date Joined Aug 2009
Total Posts : 43
   Posted 2/24/2010 12:52 AM (GMT -6)   
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...
sle, sjogren's, raynaud's, alopecia areata, cfs

"Don't hold back in mourning your old self and abilities. Reassure yourself that it's normal to be sad about it and okay to admit it. Only when you allow the emotionally protective walls you’ve spent years constructing fall to the ground, can you begin to take steps toward healing. And only then can the rebuilding begin." -Sara Gorman

Veteran Member

Date Joined Sep 2009
Total Posts : 1176
   Posted 2/24/2010 1:29 AM (GMT -6)   
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:

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!
Lyme Disease, AIH, Hashimoto's, "lupus-like" CTD?, fibro, RA, celiac disease, asthma, psoriasis, Raynaud's, hypertension, osteopenia, sleep apnea, RLS, GERD, degenerative disc disease, cubital tunnel, tarsal tunnel, Doxycycline, Prednisone, Imuran, Plaquenil, Lyrica, Cymbalta, Levothyroxine, Atenolol, Cozaar, Zyrtec, Fosamax, Albuterol, Prilosec, CPAP, Darvon, Morphine Sulfate

Veteran Member

Date Joined Mar 2006
Total Posts : 2608
   Posted 2/24/2010 12:17 PM (GMT -6)   
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!
SLE, fibro, renauds, restless leg, hiatal hernia, double vision, migraines, costocondritis.

plaquenil, neurontin, synthroid, triamterene, actonel, niaspan, lyrica, tri-est, cymbalta,

Regular Member

Date Joined Oct 2005
Total Posts : 130
   Posted 2/25/2010 9:01 AM (GMT -6)   

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.

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


Regular Member

Date Joined Dec 2006
Total Posts : 185
   Posted 3/1/2010 10:59 AM (GMT -6)   
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..
Female: 38 yrs/old DX: Lupus (dx:'03) MCTD, Raynaud's, Antithyroid antibodies, Lupus Cebritis, Lupus CNS, Lupus Pneumonitis and Stage 3 & 5 Lupus Nephritis. 9 tia's and one pontine stroke,Seizures, Photosensitivity since childhood, vasculitis, left thumb and toe amputated from raynauds, Sjogren's
Meds: Plaquenil,Prednisone 30 Mg/Day,Miracle mouthwash,Xanax, Darvocet, Xopenex inhaler, Xopenex Nebulizer, Spiriva, prevacid, aspirin 325mg

Regular Member

Date Joined Aug 2009
Total Posts : 43
   Posted 3/1/2010 12:57 PM (GMT -6)   
thank you for the advice. what does the bactroban do?
sle, sjogren's, raynaud's, alopecia areata, cfs

"Don't hold back in mourning your old self and abilities. Reassure yourself that it's normal to be sad about it and okay to admit it. Only when you allow the emotionally protective walls you’ve spent years constructing fall to the ground, can you begin to take steps toward healing. And only then can the rebuilding begin." -Sara Gorman

New Member

Date Joined May 2010
Total Posts : 3
   Posted 5/11/2010 7:35 PM (GMT -6)   
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...

Regular Member

Date Joined Feb 2008
Total Posts : 42
   Posted 5/13/2010 8:46 AM (GMT -6)   

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...


43 year old female
DX:  Mixed Connective Tissue Disease (lupus, RA, polymyocitis, scleroderma) Jan 08
Meds:  Prednisone 9 mg, Plaquenil 400 mg, Wellbutrin XL 300 mg, Calcium/D 1200 mg, 81 mg aspirin, ibuprofen and Darvocet as needed for pain ( I take it maybe 3x/week) 

Regular Member

Date Joined Aug 2009
Total Posts : 43
   Posted 7/23/2010 8:00 PM (GMT -6)   
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?!
23 years old w/ sle, sjogren's, raynaud's, pernio
meds: plaquenil, prednisone, nifedipine, pentoxifylline, paroxetine, zolpidem
supplements: iron, vitamin D, omega-3, biotin
starting methotrexate 4/14... wish me luck!

Veteran Member

Date Joined May 2005
Total Posts : 7723
   Posted 7/23/2010 8:13 PM (GMT -6)   
"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????!
Lynnwood, Lupus & Sjogren's Moderator
"Life is far too important to be taken seriously" - Oscar Wilde

Regular Member

Date Joined Apr 2011
Total Posts : 20
   Posted 4/5/2011 11:41 AM (GMT -6)   
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.

Regular Member

Date Joined Aug 2009
Total Posts : 43
   Posted 4/5/2011 1:33 PM (GMT -6)   
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
24 years old. SLE, Sjogren's, Raynaud's, discoid and pernio lupus

plaquenil (400mg), prednisone (7.5mg), pentoxifylline (400mg), lexapro (20mg), zolpidem (10mg), topimax

supplements: iron, vitamin D and E, omega-3, biotin, green tea

Regular Member

Date Joined Apr 2011
Total Posts : 20
   Posted 4/5/2011 2:31 PM (GMT -6)   
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 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 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
New Topic Post Reply Printable Version
Forum Information
Currently it is Wednesday, September 19, 2018 6:26 AM (GMT -6)
There are a total of 3,004,545 posts in 329,153 threads.
View Active Threads

Who's Online
This forum has 161744 registered members. Please welcome our newest member, barin.
235 Guest(s), 9 Registered Member(s) are currently online.  Details
mirowpl, sandyfeet, jberda1, getting by, lyme1994, Vodka, Cran with Lyme, barin, Normal59, Going for brachy