15 Questions - The Mysterious Aspects of Skin Lupus

1. I cannot go out anymore. I miss family picnics, ball games, pool time, holiday gatherings, bike rides, walking the dog. There is no way to totally cover up in the summer and the SPF clothes/hats and creams are hot. Menopause loathes this too! What do people do? I am missing my family events!  Glendale, WI

Ultraviolet light, either from sun exposure or from fluorescent or halogen light, can trigger skin problems and systemic flares in some individuals.  It is a good idea to wear protective clothing, high SPF sunscreens with both high UVB and UVA block (mexoryl or avobenzone or physical blockers like zinc or titanium dioxide), and avoid the sun except early morning and late afternoon.  This does cause problems during hot weather and interferes with social activities, but for people who experience flares of skin or systemic lupus with sun exposure, this makes the most sense.  Some people are able to shift social activities indoors or to schedule for non-peak hours of the day.  For those who experience issues related to fluorescent lights, the use of light covers may help as well as the use of sunscreens.

2. Is there anything that can be safely injected under the skin such as collagen to fill in the depressions caused by subcutaneous atrophy following panniculitis?  I have a huge "divot" in my lower leg that is unsightly.  Littleton, CO

Lupus panniculities occurs on the face and proximal extremities most frequently.  The disease involves the fat, sometimes with overlying discoid lupus skin lesions.  There are inflammatory cells that come into the skin and cause inflammation in the fat, resulting in the depressions in the skin.  Once the disease is treated, the depressions can be corrected, sometimes only temporarily, with injections of fat.  Treatment includes antimalarials, sometimes immunosuppressives, and thalidomide. 

3.  Will hair ever grow back in bald areas of the scalp affected by discoid lupus?  Julian, NC

There are several types of hair loss in lupus.  Diffuse thinning can occur when SLE is active, and this often stabilizes and re-grows once the disease is under control.  In discoid lupus, once the inflammation is controlled the re-growth of hair depends on the extent of scarring of the hair bulbs.  If there is too much damage to the bulbs, then the hair cannot re-grow.   

4. Can discoid lupus become systemic lupus?   Before a flare of my discoid lupus, I get beyond tired and my joints are sore.  Citrus Heights, CO

Discoid lupus normally occurs without systemic lupus.  However, some patients with SLE do get discoid lesions, and about 5% of those with localized DLE (above the neck) and 20% of those with generalized DLE (above and below the neck) can get systemic symptoms.  Patients with DLE should be evaluated at regular intervals to make sure that systemic disease is not developing, and if there are systemic symptoms or a flare in the skin, that is a reasonable time to consider re-evaluation for systemic disease. 

4. When I have break outs, the only thing that clears it up is a ten day dose of steroids. Is there something else that would clear my skin rather than using steroids all the time? In the meantime, I take hydroxychloroquine daily and that doesn’t help as far as break outs.  Chatsworth, CA

There are a number of ways to treat the skin lesions of lupus.  Certainly good sunscreens that block both UVB and UVA are important. A high SPF indicates good UVB block. Mexoryl SX, titanium dioxide and zinc oxide are the only potential components of sunscreens available in the U.S. that provide effective UVA block.  Sometimes topical treatments can help with skin activity.  For more extensive disease not responding to just hydroxchloroquine, other possible therapies include combinations of antimalarials, immunosuppressives, as well as other immunomodulatory therapies.  Each person needs to be evaluated to determine the best approach.

6. I was diagnosed with lupus in 1998. I have a horrible, horrible rash all over my body and scalp. My rheumatologist says it's the worst he's ever seen. I bleed without even touching anything. I have been reading some books that claim if you change your diet to no meat, no gluten, and no dairy, your skin will clear. I have had this breakout for two years now and I can't seem to get over it and if the diet would work, I would probably try it. I asked my doctor and he said that a vegetarian diet is healthy but there are no medical documents that state it would work to clear my skin. Do you know of anyone that has changed their diet and gotten better? I am desperate here. Any information would be so appreciated.  Littleton, CO

There is not any organized evidence that suggests that altering diet can improve skin lupus. A balanced diet is important. Sunscreens and sun avoidance can be helpful. Gluten plays a role in a specific skin rash called dermatitis herpetiformis, but there is no evidence that gluten plays a role in cutaneous lupus.  It is important to be careful not to take certain herbal medications that may stimulate the immune system. In addition, there may be additional medical therapies that would help your skin, as discussed above.  For more extensive disease not responding to just hydroxchloroquine, other possible therapies include combinations of antimalarials, immunosuppressives, as well as other immunomodulatory therapies.  Each person needs to evaluated to determine the best approach.

7. I have heard that Plaquenil can cause skin rashes/changes but have never been able to find much information about it. I have been on Plaquenil for nearly 20 years and have had changes in my skin health/appearance. Can you speak to the correlation (if any) between long-term plaquenil use and skin issues?  Fitchburg, WI

Most of the rashes from plaquenil occur early on after starting use of the medication. The long-term effects from plaquenil for those who don’t get the early rash can include increased skin pigmentation or blue-black rashes on the skin. The skin does change over time in everyone, and can get thinner and drier. You would need to see a physician to help evaluate your skin to see if the changes are from normal aging, lupus, or medication.

8. In 2000, I presented with bullous lesions on the trunk of my body. They grew from a small rash into these large egg-like bubbles that burned!! No one knew what they were or why I had them but several doctors suspected Bullous Pemphigoid. They were wrong and eventually, an informed dermatologist determined I have SLE. I know about all the types of lupus but sometimes get confused. In addition to SLE, he told me I had bullous lupus. I know this is a real condition but very rarely see it mentioned in any literature. Does it fall under the umbrella of SLE or discoid lupus? (I also have discoid lupus).  Los Angeles, CA

There are a number of autoimmune causes of blisters.  Bullous lupus can be diagnosed only in people who have SLE and is not a common cause of skin problems in patients with lupus.  Some patients with SLE and bullous lupus can get other types of skin lesions, including discoid lupus.

9. My lupus is primarily focused in the lower eye lids, but I recently had a bad flare that appeared on my cheeks, throat, ears, and back. My doc now wants to try quinicrine, but if it doesn't work, switch to methotrexate.  Is this something usually prescribed for DLE?  I have tried plaquenil, chloroquine, and this is the second try on quinicrine. I am also being tapered off of prednisone.  St. Clair Shores, MI

If plaquenil or chloroquine does not work, sometimes adding quinacrine to either plaquenil or to chloroquine can lead to improvement in discoid lupus.  Quinacrine alone does not usually work and needs to be added to either plaquenil or chloroquine.  If the combination antimalarials described above don’t work, then adding a medication like methotrexate can be helpful. 

10. My son has had the skin lesions over his arms, back, back of legs, chest, bottom of his feet, and palm of his hands.  But now his skin tone has darkened; is this due to the lupus?  He also has problems with his toe nails – they are thick and dark and they come off.  Is this part of the lupus too?  Dallas, TX

When skin lesions of lupus heal, they can become darker in color as part of the healing process.  This is called post-inflammatory hyperpigmentation.  Sometimes this will improve with time as cells clear the pigment in the skin and if the sun is avoided. Also, antimalarials can sometimes cause pigmentation of skin and nails, but can help control development of new skin lesions.

11. I have been diagnosed with sub-acute cutaneous lupus. What are the treatment alternatives for this rash that itches and burns?  I cannot take plaquenil so I rely on prednisone and Lidex cream.  Las Vegas, NV

Subacute cutaneous lupus will often respond to hydroxychloroquine (plaquenil).  It isn’t clear what type of problem you had with hydroxychloroquine, but sometimes side-effects can be controlled by starting at a lower dose and gradually increasing the dose as tolerated.  If there are side-effects from hydroxychloroquine that prevent its use, sometimes people are able to tolerate chloroquine.  If this doesn’t work, then other medicines like methotrexate or mycophenolate mofetil can help.  There are a number of treatments that can work for people with subacute cutaneous lupus.

12. I am in the progress of determining my on-going health issues, which seem to pointing to lupus. I had a rash break out on my thigh. After a biopsy, a dermatologist ruled out herpes simplex and vasculitis and my physician diagnosed erythema multiforme.  Is this skin condition linked or common in lupus?  Moorpark, CA

There is a type of skin lupus that can look like erythema multiforme.  It is part of something called Rowell’s syndrome.  The treatments are very much the same as for other types of skin lupus.

13. I have always had mild acne but the nature of my facial acne has changed: I now have very irritated whitish bumps that become infected and then the areas and the bumps swell and fill with fluid. The red area can be up to a dime in circumference and take months to heal. I've tried the usual acne agents: benzyl peroxide and salicylic acid but these seen to have no effect and may even be further irritating. Are these lupus lesions? (I was diagnosed in July, 2009 at 52 ) What do you recommend I do?  Croton-on-Hudson, NY

Sometimes skin lupus can look like acne, but that is a pretty unusual presentation.  Usually the skin acne lesions don’t fill with fluid, so it is quite likely that what you have is not lupus.  However, if you are concerned, you should have your skin further evaluated.

14. My skin is flaking on my eyelids, beneath my nose, and around my mouth, as well as my arms.  Is this normal for lupus?  Shawnee, KS

Flaking of the skin can happen in many people who don’t have lupus.  It would require further details and evaluation to make a helpful comment about what is causing the flaking.

15. I was recently diagnosed (after biopsy) at the Cincinnati VA with "Tumid" lupus. This is on top of my SLE diagnosed in 1997. Should I expect the Tumid to worsen (particularly in the summer)?  Lebanon, OH

Tumid lupus can be worse in the summer, and is one of the more photosensitive forms of lupus.  However, tumid lupus often occurs without SLE.  Patients with SLE can get mucin deposits in their skin.  Sometimes this worsens with the sun, but frequently treatments for SLE can improve the skin problems at the same time.