livedo reticularis-HELP

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king1234
Regular Member


Date Joined Nov 2006
Total Posts : 491
   Posted 4/5/2009 9:28 PM (GMT -7)   
Hi all, most of you know me from the past 9 months trying to find out whats wrong w me. Most recently my pancreas has become inflammed but drs do not know why, my scans have been clear so far (thank god as my dad died of pancan and it is hereditary)--I will be getting more scans however.
 
Now today I was in the sun eating breakfast (45 minutes)--had pants on, got home and noticed this web type red rash ALL over my right thigh. I did some research and it looks exactly like livedo reticularis.
 
I am wondering if this is common with lupus........... The rash went away within an hour. I emailed a pic to my dr and would LOVE feedback
----------------------------------------------------------------------
34 yr old female/GERD dx 3/07/Migraines with Aura/IBS
SYMPTOMS  migratory joint/bone pain, extreme joint cracking, feet buzzing/vibrating, right eye pain,mid spine soreness (like a constant bruise) fatigue and dizzy spells, bumps and indents on nails. 
New as of Aug-muscle twitching throughout my bod NONSTOP DAILY EVERYWHERE. 
 TESTS-BloodCBC,ANA,Sed rate,Lupus,RA, Vit D,Anti nuc,Calcium.TSH T3 -Too many to list -all CLEAR
 Scans/xraysUltra sound of stomach organs,Sig/colonoscopy (mid way through),MRI of head and spine, full body bone scan-ALL CLEAR
2/09-UPPER LEFT SIDE AB PAIN MID CENTER BURNING "DX" AS MILD PANCREATITIS-STILL UNDERGOING FURTHER TESTING.
 
 
 
 
 
 


Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 5797
   Posted 4/5/2009 9:45 PM (GMT -7)   
In general, lupus patients are sensitive to the sun. It permeates clothing, so pants aren't a help if we are in direct sun. For me, I can get a sun or heat rash just from being outside too long on a partly cloudy day, away from direct sun.

This sounds like what I would consider a "normal" lupus rash - not anything to get too excited about, but certainly something to report at your next dr visit.

Of course, if it gets more severe or stays around for a while, there is more reason to mention it to the dr sooner.

Hope that helps,

Lynnwood, Co-Moderator: Lupus Forum
SLE(’00), Sjogren's Syndrome, Raynaud's Syndrome, Seasonal Affective Disorder, Depression, Herpes Simplex 1
Plaquenil, Prednisone(15 5mg), Piroxicam, Xanax, Trazodone, Boniva, Wellbutrin, Valtrex, Vicodin, Prilosec
Links: Diagnosing Lupus (4 of 11), Lupus.org Info, Lupus Resources, Help HealingWell, Drug Interactions

Life is far too important to be taken seriously. –Oscar Wilde, 1882


king1234
Regular Member


Date Joined Nov 2006
Total Posts : 491
   Posted 4/5/2009 10:34 PM (GMT -7)   
Thanks for your response. I have not been diagnosed but think lupus could be possible do to all my unexplained sx and now unexplained pancreas inflammation. Wish we could post pics here so I could show the pix of this rash-like a red net on my thigh
----------------------------------------------------------------------
34 yr old female/GERD dx 3/07/Migraines with Aura/IBS
SYMPTOMS  migratory joint/bone pain, extreme joint cracking, feet buzzing/vibrating, right eye pain,mid spine soreness (like a constant bruise) fatigue and dizzy spells, bumps and indents on nails. 
New as of Aug-muscle twitching throughout my bod NONSTOP DAILY EVERYWHERE. 
 TESTS-BloodCBC,ANA,Sed rate,Lupus,RA, Vit D,Anti nuc,Calcium.TSH T3 -Too many to list -all CLEAR
 Scans/xraysUltra sound of stomach organs,Sig/colonoscopy (mid way through),MRI of head and spine, full body bone scan-ALL CLEAR
2/09-UPPER LEFT SIDE AB PAIN MID CENTER BURNING "DX" AS MILD PANCREATITIS-STILL UNDERGOING FURTHER TESTING.
 
 
 
 
 
 


Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5511
   Posted 4/6/2009 12:21 PM (GMT -7)   
Hi King,
 
I have Livido Reticularis on my right thigh and ankle and my right wrist.  It's found in those with the antiphospholipid syndrome and the anti-cardiolipin antibody.  It's a sign of blood clotting issues.  But it's not a rash, and it doesn't come and go.  It's permanent. Some days it might be brighter, but it's always there. If yours went away it's probably something else.
 
Have you heard back from your doctor?
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

35 years old. Diagnosed with Lupus in 2000. Fibromyalgia, Anti-phospholipid syndrome(APS)(stroke, 2002), Sjogren's, Raynaud's, Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck), anxiety, Chinook migraines. Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, Didrocal, Cozaar, Zoloft, Neurontin, calcium, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus
 
Co-Moderator for the Lupus and Fibromyalgia forums


Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 5797
   Posted 4/6/2009 12:31 PM (GMT -7)   
If someone has the antiphospholipid syndrome and the anti-cardiolipin antibody you mention, Ginny, is there anything that can be done to avoid getting the Livido Reticularis in the first place?

Thanks,
Lynnwood

king1234
Regular Member


Date Joined Nov 2006
Total Posts : 491
   Posted 4/6/2009 12:43 PM (GMT -7)   

Yes, mine went away. However, was in the sun today and it came again but on my left thigh. The rash is bright red and looks like a big net cast on my thigh.

 

I had clotting tests before a procedure and my clotting was fine.

 

No news yet on my dx, going to go back to my rhuem. Something is up, this rash is not a normal rash and looks very bizarre, clearly triggered by teh sun


----------------------------------------------------------------------
34 yr old female/GERD dx 3/07/Migraines with Aura/IBS
SYMPTOMS  migratory joint/bone pain, extreme joint cracking, feet buzzing/vibrating, right eye pain,mid spine soreness (like a constant bruise) fatigue and dizzy spells, bumps and indents on nails. 
New as of Aug-muscle twitching throughout my bod NONSTOP DAILY EVERYWHERE. 
 TESTS-BloodCBC,ANA,Sed rate,Lupus,RA, Vit D,Anti nuc,Calcium.TSH T3 -Too many to list -all CLEAR
 Scans/xraysUltra sound of stomach organs,Sig/colonoscopy (mid way through),MRI of head and spine, full body bone scan-ALL CLEAR
2/09-UPPER LEFT SIDE AB PAIN MID CENTER BURNING "DX" AS MILD PANCREATITIS-STILL UNDERGOING FURTHER TESTING.
 
 
 
 
 
 


dbab
Veteran Member


Date Joined Jan 2004
Total Posts : 4151
   Posted 4/7/2009 1:18 PM (GMT -7)   
Hi everyone! It's been awhile!

I have livido too. Just to ease your mind, it's possible to be idiopathic and I was told that it doesn't always mean a clotting issue but can. Mine comes out more when its cold and usually eases up when my body is warmer. If you ever get to see a dermatologist, I would definitely bring that up.

"Des"
 
Dx: IBS 1989, Diverticulosis 2004, Idiopathic Acute Colitis 2006, UCTD 2007
Meds: Plaquenil 400mg, Protonix 40mg, Lodine XL 500mg, Methotrexate 10mg, Prednisone 4mg (weaning), Supplements



Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5511
   Posted 4/7/2009 2:57 PM (GMT -7)   
Hey Lynnwood, that's a good question. As far as I know, there isn't anything that can be done about the markings.  It's a strange kind of "rash".  I guess rash isn't even a good description for it. It isn't raised off the skin, doesn't hurt or itch. No scabbing.  It's purple markings under the skin. If I find a good picture of what Livido Reticularis is, I'll post the link.  I wouldn't classify it as a rash.  Mine get brighter when my APS is more active. I think it's stayed about the same in all the same places for a good 6 years now. It does look like a squiggly, lace-like appearance to it.  So King, your description of what you have is pretty much how I would describe mine. 
 
Hey Des! Oh that's interesting to know.  I didn't know it could be idiopathic. Actually, mine gets worse in the cold too!  I think it has to do with circulation.  Thanks for letting us know this info!
 
Ginny
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

35 years old. Diagnosed with Lupus in 2000. Fibromyalgia, Anti-phospholipid syndrome(APS)(stroke, 2002), Sjogren's, Raynaud's, Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck), anxiety, Chinook migraines. Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, Didrocal, Cozaar, Zoloft, Neurontin, calcium, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus
 
Co-Moderator for the Lupus and Fibromyalgia forums


king1234
Regular Member


Date Joined Nov 2006
Total Posts : 491
   Posted 4/7/2009 3:01 PM (GMT -7)   
I have a photo of mine, is there a way to post it here???
 
Thanks guys....
----------------------------------------------------------------------
34 yr old female/GERD dx 3/07/Migraines with Aura/IBS
SYMPTOMS  migratory joint/bone pain, extreme joint cracking, feet buzzing/vibrating, right eye pain,mid spine soreness (like a constant bruise) fatigue and dizzy spells, bumps and indents on nails. 
New as of Aug-muscle twitching throughout my bod NONSTOP DAILY EVERYWHERE. 
 TESTS-BloodCBC,ANA,Sed rate,Lupus,RA, Vit D,Anti nuc,Calcium.TSH T3 -Too many to list -all CLEAR
 Scans/xraysUltra sound of stomach organs,Sig/colonoscopy (mid way through),MRI of head and spine, full body bone scan-ALL CLEAR
2/09-UPPER LEFT SIDE AB PAIN MID CENTER BURNING "DX" AS MILD PANCREATITIS-STILL UNDERGOING FURTHER TESTING.
 
 
 
 
 
 


purplerose652
Regular Member


Date Joined Mar 2006
Total Posts : 124
   Posted 4/7/2009 6:50 PM (GMT -7)   
Hello, this happens to me all the time when I am in the sun. But it usually goes away in a few hours. I just figured it was sun sensitivity.
Take Care,
 
Renee
 
"Grace by which I stand."
 
Fibromyalgia, IBS,Gerd, Scoliosis, & Costochondritis, Lupus
 
 


king1234
Regular Member


Date Joined Nov 2006
Total Posts : 491
   Posted 4/7/2009 7:07 PM (GMT -7)   
I am going to see my rheum tomorrow. I cannot help but think all of my undx symptoms, along w my pancreas inflammation are all connected.
----------------------------------------------------------------------
34 yr old female/GERD dx 3/07/Migraines with Aura/IBS
SYMPTOMS  migratory joint/bone pain, extreme joint cracking, feet buzzing/vibrating, right eye pain,mid spine soreness (like a constant bruise) fatigue and dizzy spells, bumps and indents on nails. 
New as of Aug-muscle twitching throughout my bod NONSTOP DAILY EVERYWHERE. 
 TESTS-BloodCBC,ANA,Sed rate,Lupus,RA, Vit D,Anti nuc,Calcium.TSH T3 -Too many to list -all CLEAR
 Scans/xraysUltra sound of stomach organs,Sig/colonoscopy (mid way through),MRI of head and spine, full body bone scan-ALL CLEAR
2/09-UPPER LEFT SIDE AB PAIN MID CENTER BURNING "DX" AS MILD PANCREATITIS-STILL UNDERGOING FURTHER TESTING.
 
 
 
 
 
 


cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1942
   Posted 4/7/2009 8:42 PM (GMT -7)   
king--
I get something like that on the palms of my hand and have seen something milder on my legs,though they usually go red and blue when it happens. If its something that can become permanent, is vascular in nature and on one leg, maybe talking to a vascular doc about it would help. There is a condition where only one leg swells, the left, called May thurner syndrome, which is repairable. Good circulation is important I'm learning in preventing clots and more venous damage. I was surprised at the vascular problems I have, and it kind of explains a few things, like why my whole body is falling apart! Along with AI, of course. There are some autoimmune vascular conditions too, mostly dx by test for P-ANCA.

I'm glad it went away. I always figured mine was just reynauds or something.
Love, Marji
Ills--Sjogrens-Lupus cond., AI polygland. dysfunction 2, hyper/hypopigment, scoliosis,kyphosis,stenosis, deg.,O.A.,spine surgeries, salivary/lymphectomies, NASH, COPD, RLS, UT/GI bleeds, hystero, brain/nerve damage,TB
Meds--INH,Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, HRT and Lidocaine patchs, Voltaren gel, Klonopin, Vicodin, Restasis, Albuterol, steroids


dbab
Veteran Member


Date Joined Jan 2004
Total Posts : 4151
   Posted 4/7/2009 8:48 PM (GMT -7)   
You need a photo hosting site to post a pic, I think... this is a pic of my left thigh I just took. This is what it looks like on me, yours may be similar. (It may be a bit blurry, sometimes have a hard time holding still)

i28.photobucket.com/albums/c208/dbab75/IMG_1309-2.jpg?t=1239159250

"Des"
 
Dx: IBS 1989, Diverticulosis 2004, Idiopathic Acute Colitis 2006, UCTD 2007
Meds: Plaquenil 400mg, Protonix 40mg, Lodine XL 500mg, Methotrexate 10mg, Prednisone 4mg (weaning), Supplements


Post Edited (dbab) : 4/7/2009 8:57:07 PM (GMT-6)


king1234
Regular Member


Date Joined Nov 2006
Total Posts : 491
   Posted 4/7/2009 10:30 PM (GMT -7)   
Yes, mine looked like this but much brighter. I sent a  pic to my dr, he said it looks like livedo as well and said he suspects lupus. Though I do not want lupus, I would be happy to have a name to all of this odd stuff going on in my body, ESPECIALLY the reason for my pancreas inflammation (as I have been SO scared its cancer)
----------------------------------------------------------------------
34 yr old female/GERD dx 3/07/Migraines with Aura/IBS
SYMPTOMS  migratory joint/bone pain, extreme joint cracking, feet buzzing/vibrating, right eye pain,mid spine soreness (like a constant bruise) fatigue and dizzy spells, bumps and indents on nails. 
New as of Aug-muscle twitching throughout my bod NONSTOP DAILY EVERYWHERE. 
 TESTS-BloodCBC,ANA,Sed rate,Lupus,RA, Vit D,Anti nuc,Calcium.TSH T3 -Too many to list -all CLEAR
 Scans/xraysUltra sound of stomach organs,Sig/colonoscopy (mid way through),MRI of head and spine, full body bone scan-ALL CLEAR
2/09-UPPER LEFT SIDE AB PAIN MID CENTER BURNING "DX" AS MILD PANCREATITIS-STILL UNDERGOING FURTHER TESTING.
 
 
 
 
 
 


king1234
Regular Member


Date Joined Nov 2006
Total Posts : 491
   Posted 4/7/2009 10:49 PM (GMT -7)   

Okay, here is  a picture of my rash, it was A LOT brighter in person. Got it 2 more times after being in heat (once out of the shower, once again outside)

 

http://s729.photobucket.com/albums/ww291/k2626/?action=view&current=Photo-rash.jpg


----------------------------------------------------------------------
34 yr old female/GERD dx 3/07/Migraines with Aura/IBS
SYMPTOMS  migratory joint/bone pain, extreme joint cracking, feet buzzing/vibrating, right eye pain,mid spine soreness (like a constant bruise) fatigue and dizzy spells, bumps and indents on nails. 
New as of Aug-muscle twitching throughout my bod NONSTOP DAILY EVERYWHERE. 
 TESTS-BloodCBC,ANA,Sed rate,Lupus,RA, Vit D,Anti nuc,Calcium.TSH T3 -Too many to list -all CLEAR
 Scans/xraysUltra sound of stomach organs,Sig/colonoscopy (mid way through),MRI of head and spine, full body bone scan-ALL CLEAR
2/09-UPPER LEFT SIDE AB PAIN MID CENTER BURNING "DX" AS MILD PANCREATITIS-STILL UNDERGOING FURTHER TESTING.
 
 
 
 
 
 


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 4/8/2009 4:11 PM (GMT -7)   

I've had that lacy look at times.   I thought it might be blood vessels showing through.   I used to get it when I was doing physical therapy and the therapist would comment on it and said he was going to have the doctor look at it and then never did.  

I got curious about the pictures and found LOTS . . . yikes . . . some of these are really dramatic.

http://images.google.com/images?q=livedo&oe=utf-8&rls=org.mozilla:en-US:official&client=firefox-a&um=1&ie=UTF-8&sa=N&hl=en&tab=wi

I hope no one here has such dramatic issues with livedo.

Blessings!


In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


dbab
Veteran Member


Date Joined Jan 2004
Total Posts : 4151
   Posted 4/8/2009 4:34 PM (GMT -7)   
King, You are a lot fairer than me so yours will be more brighter and more defined in the picture. I had to take mine without the flash because the flash just makes everything white. That's what is so frustrating about taking pics of the rashes plus my camera is not exactly the best LOL.

Rosie, Yeah those are pretty dramatic. Mine have never looked like that thank goodness.

"Des"
 
Dx: IBS 1989, Diverticulosis 2004, Idiopathic Acute Colitis 2006, UCTD 2007
Meds: Plaquenil 400mg, Protonix 40mg, Lodine XL 500mg, Methotrexate 10mg, Prednisone 4mg (weaning), Supplements



AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 4/8/2009 5:35 PM (GMT -7)   
Des . . . if your camera has a little "flower" icon . . . try using that to take your pics. It is for closeups. Ya . . . taking pictures is so tricky - the lighting- the setting - aghhhhh!!

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


king1234
Regular Member


Date Joined Nov 2006
Total Posts : 491
   Posted 4/8/2009 6:30 PM (GMT -7)   
Okay, so went to my rheum today and said (without me even saying a word) the rash I showed her looked just live livedo. She said I either have a stand alone clotting issue, or its associated with lupus (which I am not dxd with). She ran a bunch of clotting tests and a few for lupus. I also read online this can be associated with pancreati***---I have had a very mild form of it so maybe its connected to that, though think it could be more connected to acute. Time will tell I suppose.....

----------------------------------------------------------------------
34 yr old female/GERD dx 3/07/Migraines with Aura/IBS
SYMPTOMS  migratory joint/bone pain, extreme joint cracking, feet buzzing/vibrating, right eye pain,mid spine soreness (like a constant bruise) fatigue and dizzy spells, bumps and indents on nails. 
New as of Aug-muscle twitching throughout my bod NONSTOP DAILY EVERYWHERE. 
 TESTS-BloodCBC,ANA,Sed rate,Lupus,RA, Vit D,Anti nuc,Calcium.TSH T3 -Too many to list -all CLEAR
 Scans/xraysUltra sound of stomach organs,Sig/colonoscopy (mid way through),MRI of head and spine, full body bone scan-ALL CLEAR
2/09-UPPER LEFT SIDE AB PAIN MID CENTER BURNING "DX" AS MILD PANCREATITIS-STILL UNDERGOING FURTHER TESTING.
 
 
 
 
 
 


Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5511
   Posted 4/9/2009 8:05 PM (GMT -7)   
Holy smackers... Those pictures are really extreme!  My livido is just one short squiggly line on my wrist, right thigh and ankle. The lines are bright purple though.  The fact that i have such fair skin makes them look really bright.
 
King, I'm glad your doctor is doing more tests!  That is very positive.  I hope you are on the fast track to a diagnosis and treatment!
 
Ginny
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

35 years old. Diagnosed with Lupus in 2000. Fibromyalgia, Anti-phospholipid syndrome(APS)(stroke, 2002), Sjogren's, Raynaud's, Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck), anxiety, Chinook migraines. Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, Didrocal, Cozaar, Zoloft, Neurontin, calcium, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus
 
Co-Moderator for the Lupus and Fibromyalgia forums


dolly2451
New Member


Date Joined Jan 2010
Total Posts : 2
   Posted 1/5/2010 10:42 PM (GMT -7)   

I have been researching livedo reticularis for a couple of years now.   in the fall of 07 i was studying abroad in London and i notice my legs looked weird.  i started to freak out and took a million pictures (hardly came out)  my best friend said that it looked like i was cold and she (very fair skin) gets like that when their cold or takes adderall.  I knew that it was something more.   it stayed with me my whole trip and eventually got worse.    At first it was on my inner thighs and then spread to my whole legs within months.   a year later it started to develop on my inner arms and a few months later my whole arms including my hands.    Now it is starting to show on my stomach.    

 

I have been to 4 rheumatologists and 2 dermatologists-- i found that it is livedo reticularis.   i still have not received an answer to why or how it was caused and how to treat it.   The first dr i went to said that there is no test, no cure, no treatment and i will have it for the rest of my life!   I was so devastated that i am still on a search for someone who can help me.   I have researched many medical indexes in the hopes i will find more info then on the web.    I did however find out that there are many types of livedo reticularis and some are treatable.   There is a skin biopsy that can be done to determine the specific type (i have not done this yet since i have not found a dr who knows a whole lot about this which many know a lil about it).

 

I have had sooo many blood tests in the past 3 years and everything is normal (thank god but i still rather know what’s causing it).  A few months ago i was slightly elevated in antiphosolipid.  Just recently my blood test showed it in normal levels now.  Actually today i was told that i have a severe vitamin d deficiency.   i was doing research and found that a lot of people with LR have low vit d.  i don’t know if this means anything.   I was told that LR can go away on its own or it can become permanent.    

 

They say the cold can cause it or make it worse but i have found that heat and cold do it.   When my LR is there, my legs and ankles start to swell and throb sometimes when i am standing and sitting.  ugh i wish i could get some help with this and find out whats really going on.  I feel like my body is falling apart and there are so many things wrong with me.  but we gotta have faith that it will all be better (and with some answers) soon. 

I know i wrote a lot, i hope my story has helped someone and i hope someone can help me.

 

There is this article, i suggest taking it to the dr bc it is sooo confusing for a non-medical professonal, called livedo reticularis: an update written by Mark B. Gibbs, BS, Joseph C. English III, MD, and Matthew J. Zirwas, MD.  it has all the info on LR and it can help your dr with your LR.  This is from a medical journal so it might be hard to get the full article (its 11pgs) on the web by try it and i hope it helps (i don't know how to attach a file to this otherwise i would have)

 

If any of you are on the east coast there is this dr (i have an app to see him in a couple of months) who is a rheumatologist and a dermatologist.  He deals LR all the time and i would say to my knowledge that he is one of the best and leading drs in treating LR. 

 Dr. Andrew Franks, he is at NYU Medical Center in Manhattan.

 

good luck to you all!

 

 


mom46
Veteran Member


Date Joined Dec 2004
Total Posts : 8198
   Posted 1/5/2010 11:11 PM (GMT -7)   
King,
I would suggest you stay out of the sun if at all possible until you find the root cause of your symptoms. The sun can be damaging to people with Lupus.

Let us know what you find out and take care. You will be in my thoughts and prayers.

Babs

BumbleBee1
Regular Member


Date Joined Oct 2005
Total Posts : 130
   Posted 1/11/2010 9:06 AM (GMT -7)   
Dolly wrote




If any of you are on the east coast there is this dr (i have an app to see him in a couple of months) who is a rheumatologist and a dermatologist. He deals LR all the time and i would say to my knowledge that he is one of the best and leading drs in treating LR.

Dr. Andrew Franks, he is at NYU Medical Center in Manhattan.



Dr Franks is my hero! He specialises in skin manifestations of connective tissue diseases. Apart from being an amazingly good doctor he is so charming, friendly and always courteous. When I got into remission I had laser therapy for facial redness from the lupus same as they use for spider veins. But he wouldn't use laser for anything if the lupus is active and the patient isn't on an anti malarial for fear of reactivating the lupus. I can't think of anybody I would trust more.

Livedo might have no meaning at all but along with other symptoms it is strongly associated with APS.

You can see Dr Franks giving a talk on skin lupus here

http://www.lupusny.org/show.php?2008_manhattan_tour

:)

BB

Lucy26687
New Member


Date Joined Jan 2011
Total Posts : 1
   Posted 1/10/2011 5:56 PM (GMT -7)   
Hi everyone!
 
I am so relieved that I have found this forum. I thought that I was the only one with LR. It started about 5 years ago when I noticed that my legs developed purple lace like splotches, initially just in the cold, but progressing on to being there all the time. I didn't know anyone else who had it, and my family doctor had never seen anything like it. She eventually referred me to a dermatologist who diagnosed LR and did heaps and heaps of tests which all turned out to be normal.
 
I am so devastated about having this. I really, really would like to know what causes it and if a cure can be found. I really wish I could wear skirts again. I hope that with time and the development of new technology and medical discoveries that they will develop a treatment. Not sure how many people out there also have it and if there is any research being carried out about it.
 
I notice the my LR disappears if I elevate my legs, or if I rub my legs or if I keep them warm (but not too hot, as it makes it come back!). It is reallty strange. My dermatologist explained it like: 'the blood vessels supplying your outer skin go into spasm in response to the cold'. Not sure if anyone else has also had a similar explanation.
 
Again, my best wishes to everyone out there with this condition. I feel like less of a 'freak' now that I know that I am not the only one.
 
Thanks everyone
 
Lucy

ebteb
New Member


Date Joined Dec 2010
Total Posts : 12
   Posted 1/11/2011 7:24 PM (GMT -7)   

Great information about the LR!  Thanks all!  I was dxd with it last spring when the neurologist I went to see saw it on my arms.  The severity of it comes and goes -- always affected by cold and sometimes the heat. 

I first noticed it last winter getting out of a hot shower.  I was covered with it, my breasts, my thighes, the top part of my arms, even my rear end!  It was so ugly.  At the time, I was "off of doctors" and just gawked for a bit, then tried to forget about another weird body thing.  I had no idea it was connected to AI issues/diseases until in the doctors office.  Now I have it on both thighs, my ankles, along the arches of my feet (bottom), both arms (on forearms, too), as well as the top of the breasts.  On occasion, I'll even notice it under my finger nails (close to the cuticle area).  It's always there, sometimes barely noticeable unless you know what it is. 

What it is though, is UGLY.   Going to the beach in the summer, without a deep tan, is a trip.  Still no dx on lupus though.

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