15 Questions - Skin Issues and Hair Loss with Lupus

(June 2012) Skin issues and hair loss are two of the many ways lupus impacts people’s lives. Approximately two-thirds of people with lupus will develop some type of skin disease (cutaneous lupus) and the mysterious appearance of lesions, rashes, and scars can be worrisome. This month, Dr. David Fiorentino answered your questions about skin issues and hair loss among people with lupus.

1. What tests do I need to diagnose the cause of my rashes and hair loss?  Cleveland, OH

Approaching the cause of a rash or hair loss in a patient with lupus is no different than how we would approach these issues in any other patient.  For a rash, while it is often tempting to blame one’s lupus, many other common causes can be the real explanation.  As is the case with many medical disorders, there is often no single “test” that can provide the answer.  Especially in dermatology, we use what is called a “clinicopathologic correlation”—that means that we take into account features of the rash that we see with our eye, any relevant laboratory tests, and, if needed, a skin biopsy.  So, for a rash, the first place to start is to see an experienced dermatologist.  After seeing the rash and talking to you, they may want to do more tests, including possible skin biopsy. For hair loss, the situation is somewhat the same.  There are many possible causes of hair loss, in addition to forms of skin lupus.  These include medications, recent severe illness, problems with the thyroid, certain vitamin or nutritional deficiencies, genetics, other diseases, as well as specific skin diseases of the scalp.  Again, the best place to start is a dermatologist that you trust.  

2. My daughter is 13 y/o, diagnosed recently with lupus. She is losing her hair for periods of time.  Does it mean when she is losing hair that the lupus is active?  What remedies are there to help stop the loss of hair or help it grow back?  Lake Mary, FL

This is a very good question.  In order to answer this question, I am going to assume that your daughter was diagnosed with systemic lupus (that is, not just on the skin), and, that her hair loss is not associated with any type of rash on her head.  In this situation, again, it is often tempting to blame the lupus on the hair loss.  While this may be the case, one should always consider other possible causes—especially, in your daughter’s case, the medications that are being used to treat her lupus (if any). However, the hair loss could certainly be due to her systemic lupus. This form of hair loss is known as “telogen effluvium” and is basically due to the insult of being so sick.  It tends to be diffuse, but can concentrate around the frontal areas of the scalp (usually on either side more than in the middle).  Patchy hair loss can also be the result of a flare in lupus disease activity.  If this hair loss is due to her systemic lupus (and not a form of skin lupus such as discoid lupus), then you are generally correct in saying that it tends to mean that her lupus is active.  However, there are exceptions to this rule, as sometimes loss of hair can be the only sign of active lupus.  Thus, it would be important for your daughter’s doctor to assess other lab tests that can also indicate active lupus.  If the hair loss is due to active lupus, than the best therapy is that which controls her systemic lupus.  Isolated hair loss in the absence of signs of active systemic lupus puts the patient and provider in a difficult situation in that it would require a systemic immunosuppressive therapy, which, in many people’s eyes, may not be justified for hair loss alone.

3. Can hair replacement work? I have loss about 65% of my hair and ready to buy a wig! I feel like everyone stares at me!  Lebanon, PA

The first thing I would say here is that it really depends on what has caused the hair loss.  If the hair loss is due to scarring from discoid lupus, hair transplantation can be a very useful cosmetic adjunct.  Hair transplantation does not make sense in the patient that has a non-scarring form of hair loss (even if it is related to lupus).  The key here is only to consider transplantation when the lupus itself is under good control.  I personally demand that there have been no signs of lupus activity (in terms of hair loss) in the past 6 months, and, that the patient is concurrently on some type of therapy that would keep the disease in remission.  The problem here is that sometimes trauma (including that induced by the hair transplant procedure) can re-activate or induce lupus (and hair loss), so that is why I like to make sure that the patient’s disease activity is in remission.  I have had several patients undergo hair transplantation for scarring discoid lupus that are doing very well many years after the procedure.  If you are interested, you can talk to a cosmetic dermatologist or plastic surgeon in your area that performs these procedures. 

4. 20 yrs. ago when I was first diagnosed with SLE I had lost most of my hair. After meds and steroid shots it grew back. I am now mostly symptom free and on no meds. I still, when under stress have bald spots is this the SLE or something else? Doctors don't seem to know.  Boulder, CO

This is a difficult question to answer without examining you and knowing more history.  Again, the point here is that any symptom, including hair loss, in a lupus patient does not necessarily have to be blamed on the lupus.  Many lupus and non-lupus related disorders can cause hair loss.  The general term for hair loss is alopecia.  We tend to divide up alopecia into two types: scarring and non-scarring.  Scarring means that the hair follicles have been destroyed due to inflammation (and thus there is no chance of hair re-growth), and discoid lupus is one major cause of scarring alopecia.  However, there are others.  And it is important to remember that, if caught early enough, scarring alopecia can also show hair regrowth.  Non-scarring means that the hair follicles are still present.  Common causes of this include active systemic lupus, alopecia areata, medications and certain metabolic and nutritional problems.  A common cause of patchy, non-scarring alopecia in a lupus patient would be either alopecia areata or active systemic lupus.  I would suggest if your doctors do not know what is the cause you might consider asking for a skin biopsy to help with the diagnosis.  If it is alopecia areata, then injections of cortisone into the scalp (as you mention) can be very helpful.  Unfortunately no systemic medications have been shown to be effective for alopecia areata. 

5. I am a 47 year old female with Lupus. My hair use to be shiny and soft now dry, brittle and thin. I've noticed that now it has stopped growing. I haven't had it cut other than a little trim in over a year and it seems like it has stopped growing. Is this common with Lupus patients?  Trinity, FL

Certainly patients with lupus can suffer from brittle hair that does not grow well.  One study compared the diameter of hairs in patients with lupus and found they are much thinner, in general, than hairs from people without lupus.  A common cause of brittle hair is so-called “lupus hair”, which tends to occur all along the edges of the scalp, especially in the front.  However, it is important to make sure there are no other causes of brittle hair.  These could include mechanical (due to dying, styling, etc.), nutritional, or metabolic (such as having a thyroid imbalance).  Some people claim that biotin supplementation can help with brittle hair and nails.  However, I would recommend that you have some basic lab tests (including iron, vitamin B levels, thyroid levels) to make sure that nothing else is going on to explain this.

6. Is there any kind of medication/treatment that I can help fade some of the scars and dark discoloration (hyperpigmentation) blotches on my whole body?  Panama City, FL

This is a great question.  Much like my response to the question about hair transplantation (see question #3), before even considering therapy for scars and pigmentation problems you should make sure that your skin disease has been in remission for many months.  Basically the concept here is that lupus skin disease can be divided into “activity” versus “damage”—the main idea here is that skin activity can result in damage if not controlled quickly.  Activity would be high if redness, itch, flakiness, or new lesions were present.  Damage would be the scar or pigment problem that remains, and the latter is not responsive to immunosuppressive medications that we use for lupus.  Once the active disease has been eradicated, you can begin to think about dealing with the damage.  There are many types of damage—scars (that can leave either white/red pigmentation or pitted damage), pigmentation (both light and dark), and permanent redness (that we call telangiectasias due to widened blood vessels).  There are indeed measures that can be used for all of these types of damage, depending on what is present.  Sometimes certain bleaching creams (containing hyodroquinone) can help for the dark spots, while many times certain laser therapies can make sense for redness or dark spots.  Filling in the “lumpy” or “pitted” defects from certain scars may require surgical techniques or injections of fillers.  Any of these procedures run the risk of inducing new lesions of lupus, due to the minor drauma.  You really would need to visit an experienced cosmetic dermatologist to get recommendations that make sense for your particular situation.  

7. I have been living with SLE since 1992.  Now I have been diagnosed with psoriasis on my scalp as well on my skin.  Now I have two auto immune diseases.   Is this normal?  Will my psoriasis aggravate my SLE, or can the use of plaquenil aggravate my psoriasis?  San Isidro, TX

Your situation is not that unusual.  Remember that psoriasis is present in approximately 3% of all people living in the United States, so, by chance, it can co-occur with lupus.  But, we are learning that many of the genes that predispose people to certain autoimmune diseases are shared between diseases.  Some of the dysregulated pathways in lupus are shared with psoriasis, so perhaps this is not surprising.  I have several patients with both lupus and psoriasis.  In general, either disease could potentially aggravate the other, since common immunologic mechanisms are likely shared between the two diseases.  In addition, we know that, for both diseases, there exists the phenomenon of “isomorphic response”—this means that any damage or trauma to the skin (including that of a rash) could instigate new disease activity.  Thus, a lesion of psoriasis could theoretically induce a lesion of lupus, and vice-versa.  In general, although it is said that Plaquenil can make psoriasis worse, this is likely a rare, and minor effect.  As we always weigh risks and benefits with any medication, I would say that the lupus benefits provided by Plaquenil far outweigh any potential risk with making psoriasis worse. 

8. I have been diagnosed with lichen sclerosus and would like to know how common this is for lupus patients.  I have not personally heard of anyone else having this but read about it on internet. Do you have any suggestions for treatment other than what I have mentioned?  Ennis, TX

Lichen sclerosis does not commonly co-occur with lupus.  Interestingly, both diseases are characterized by over activity of a molecule called interferon in the skin.  There are certain other features that are shared by lichen sclerosis and lupus, in terms of what we see on skin biopsies.  In my experience lichen sclerosis more commonly co-exists with another autoimmune disease called localized scleroderma.  In terms of therapy, we tend to use topical corticosteroids (often very strong ones).  In recent years many providers have also used a class of drugs called topical immunomodulators (which include tacrolimus ointment or pimecrolimus cream).  Other typical immunosuppressive agents (that are used in lupus) have really not been well tested in lichen sclerosis, unfortunately.  

9. I have been diagnosed with discoid lupus.  I have only had the initial rash which covered most of my body.  This was 3 years ago.  I am crazy careful about covering with lotion and clothing.  My doctor has said I have to live my life.  But I avoid so many events because of the sun - sometimes it is just too hot to go to a party in the summer with so much stuff on. There are places where a hat just does not work.   Am I being too careful?  I have a friend whose mother- in-law wears shorts in the summer.  Can I do this as long as I am wearing a fresh layer of lotion?  I have read stories of children playing their outdoor sports.  I would guess they are not covered from head to toe.  Some general guidance would be appreciated.  White Plains, MD

This is such a good question, as, “being good about sun protection” is often easier said than done.  What we know is the following: almost all kinds of skin lupus have some element of being worsened by ultraviolet radiation.  However, there is quite a bit of heterogeneity between diseases and even patients.  If you read the studies, discoid lupus is actually one of the least “photosensitive” types of skin lupus.  However, it is still clearly worsened by ultraviolet light.  I find that this photosensitivity can also vary among different patients with discoid lupus.  There are many ways of minimizing your exposure to the sun, including broad spectrum sunscreen and sun protective clothing.  However, it is important to remember also that trying to stay out of the direct sunlight during daytime hours (between 10 am and 3 pm) is also useful.  Certainly we advocate that our patients stay active, even with outdoor sports if that is their passion.  We recommend trying to perform those activities in the morning or late afternoon/evening if at all possible.  Certainly for some patients they can get away with wearing shorts from time to time as long as they are wearing a broad spectrum sunscreen that blocks UVA and UVB rays.  However, some patients are unfortunately extremely sensitive to the sun, so that their disease clearly will flare after even a fairly minimal exposure.  I think the best answer here is to do your best, but, if you find your self at a function where you really want to wear cool (and thus minimal) clothing, just to be careful with using sunscreen and try to keep in the shade as much as possible.  Remember that the effectiveness of the sunscreen is completely dependent upon applying enough and re-applying every 2-3 hours, and more if you are sweating or swimming.  In general, you should use ½ teaspoon in each area of the head, right arm, and left arm, and a full teaspoon on each of your chest, back, right and left legs. 

10. How can discoid lupus face scars affect an individual?  I mean psychologically, socially and emotionally.  Barceloneta, Puerto Rico

This is such an important point that we are just starting now to get a handle on.  Recent studies clearly show that patients with cutaneous lupus are dramatically affected in terms of their quality of life.  Some studies suggest that the emotional damage of discoid lupus is akin to that of having a major medical disorder such as congestive heart failure or diabetes.  Certainly the shame and embarrassment of having a disorder that can leave scars on the face or cause hair loss can be devastating.  This self-consciousness can lead to dysfunctional interactions in the workplace and at home.  Indeed, patients with discoid lupus have a worse quality of life compared to those suffering from other dermatologic conditions.  One of the devastating elements is the consequence of well-meaning physicians who encourage sun protection and/or avoidance for our patients—there may be some resulting psychological discomfort on the part of the patient.  This can be a result of fear of going outside at all (due to worries of causing disease worsening) as well as having obvious impacts on summer vacations or other leisure time.  Studies show a clear connection with lesions on the face and poor quality of life, as well as increased emotional damage in females.  In addition, patients who are younger or have more severe disease are more severely affected.  At this point all we can do is ask our physicians to be vigilant about these issues, and as health care provider we always try to remember to ask our patients questions relating to their mood in order to identify and help those at increased risk for depression or even self-harm. 

11. I had a biopsy that confirmed the little red dots that itched/burned on the soles of my feet were bullous lupus. They didn't look anything like the blister-like pictures I saw when I looked it up on the internet.  Is it serious?  It faded away with low doses of steroids for a few months and only comes back, just barely, just occasionally, and so far hasn't required steroids again.  Should I worry that this is a serious complication or in general, an annoying complication? The internet articles described it as a rare but serious complication. Is this true?  Cornwall, NY

Bullous lupus is a form of skin disease that causes blisters on the skin, as you say.  It tends to occur in patients with active systemic lupus.  It is important that you had a biopsy and that everybody is comfortable with this diagnosis, as it is relatively rare.  This is not necessarily a serious complication.  Because it is associated with often very active systemic lupus, the patients can be sick, and perhaps that is why the article you read mentioned it being serious.  But as long as you are feeling well, I would consider these lesions more of annoyances—but, they can be important clues that your systemic disease is (or is about to) flare, and that is why they should be taken seriously.

12. I have noticed that I have had a growing number of small red dots and marks all over on my skin (including areas never reached by the sun).  Could these be part of my SLE?  Raritan, NJ

This is a difficult question to answer without seeing photographs.  In general, what you describe is likely due to overgrowths of blood vessels that are called cherry angiomas.  These are completely benign and not related to your lupus. 

13. I have Lupus Panniculitis.  The lumps are painful and very sore.  They are from my knees to my neck.  I have taken so many different medicines but nothing seems to help.  Any suggestions please.  Lincoln, NE

Lupus panniculitis is inflammation of the fat that can occur in otherwise healthy people or in people with systemic lupus.  When they are active, they are felt as lumps underneath the skin, but can resolve with complete disappearance of the fat below so that only depression of the skin are left behind.  I have found that often these lesions can be difficult to control.  For active lumps, I tend to use antimalarials first (e.g. plaquenil), sometimes in combination (there is a medication called quinacrine that can be used safely with plaquenil).  If that is not helpful, my next agent I like to try is dapsone.  Certainly many of the other more familiar agents can be tried (such as CellCept or methotrexate).  You can combine dapsone with antimalarials and even additionally add methotrexate or CellCept.  Some providers like to inject these with cortisone—this is another option, but you need to watch out for atrophy of the fat following this procedure.  The only other suggestion I would make is to ensure that this is indeed the correct diagnosis (confirmed with a skin biopsy), as there are other conditions, including painful benign growths of fat tissue called lipomas, that can be painful and confused with lupus panniculitis. 

14. I have been diagnosed with sub-acute cutaneous lupus (SCLE).  What percentages of people with lupus have SCLE?  CellCept is the only drug that has worked for me.  How is SCLE normally treated?  Should I be seeing a dermatologist and rheumatologist?  Smithtown, NY

These are all great questions.  SCLE really is only a descriptive term for a specific type of skin lesion that has certain clinical and laboratory features.  Approximately 10-15% of patients with systemic lupus have SCLE lesions.  About half of patients with SCLE lesions do not have any form of systemic lupus, while 10% of those will have a significant internal organ that is involved by lupus.  Since SCLE is often induced by medications, an attempt to identify and remove a possible offending medication is where I start when treating a patient with SCLE.  Beyond that, antimalarials (e.g. Plaquenil) work very well for the vast majority of SCLE patients.  However, there are certainly people who do not respond.  Other medications that are used include methotrexate, CellCept, or Imuran.  Rarely, people with very stubborn disease are treated with thalidomide.  In general, what type of doctor you see really depends upon the individual doctor’s experience and comfort level and your level of systemic disease.  If you do not have systemic disease and just have skin lesions, then it is fine to see an experienced dermatologist.  If you have systemic lupus as well, you are best served by seeing a rheumatologist hopefully in conjunction with a dermatologist with experience treating cutaneous lupus. 

15. My daughter has DLE and Tumid Lupus. It started with a lesion on her arm and over the last 3 years has spread to her face, chest, and back. She recently discovered lesions on her fingers.   Can you please provide information on Tumid Lupus and its treatment?  Given her progression, where can she expect to see lesions next? San Diego, CA

Tumid lupus is the newest type of skin lupus that has been described (really in the past 10-15 years).  It is still controversial among some investigators if this is truly a form of lupus, although I believe that it should be considered just that.  Tumid (meaning swollen or protuberant) lupus lesions are different in that they are edematous (puffy) lesions of the skin.  The inflammation involves the dermis (the thick connective tissue part of the skin), whereas many forms of skin lupus affect the epidermis (the most superficial, thin layer).  Tumid lupus is really a descriptive term for the skin lesions, although it must be supported by certain pathologic findings on skin biopsy.  We do not understand exactly how or if this form of lupus differs from other more familiar types of lupus, in terms of cause.  Tumid lupus spots can be difficult to treat, but they do not leave scarring when they resolve.  They are said to be amongst the most sun sensitive forms of lupus, so sun protection for your daughter is of high importance.  Most patients with tumid lupus lesions on the skin actually do not have systemic lupus, nor do they seem to have a high chance of progressing to systemic lupus.  Tumid lupus lesions typically occur in sun-exposed areas (face, chest, back, arms), and so I would not necessarily expect that your daughter would continue to have progressive tumid lesions in other areas of her body.  The lesions on the fingers may indeed be other types of skin lupus (either discoid lupus or even possibly a condition called chilblain’s lupus).  In general, tumid lupus is treated much the same way as other skin forms of lupus.  We start with topical corticosteroids if there are only few lesions, and then use antimalarial treatment (e.g. Plaquenil), possibly in combination, if the lesions are more widespread or resistant to topical therapies.  If that is not effective, then we tend to move to more typical medications like methotrexate, CellCept, or Imuran.  Prednisone is generally quite effective for tumid lupus, but it is not an acceptable long term therapy due to side effects.