Chat Transcript, Dr. Werth, December 20, 2006

Live Chat with Dr. Victoria P. Werth

Skin Disease in Lupus  

Moderator
Good evening. Welcome to the third in our on-going series of live chats with various experts on lupus. This chat is hosted by the Lupus Foundation of America, the nation’s leading nonprofit voluntary health organization dedicated to finding the causes and cure for lupus.We are very pleased to have as our guest today Dr. Victoria P. Werth. Dr. Werth is chief of the Division of Dermatology, at the Philadelphia Veterans Administration Hospital. She is also a Professor of Dermatology and Medicine at the University of Pennsylvania School of Medicine.

Moderator
Dr. Werth received her medical degree from Johns Hopkins University in Baltimore and served her internship in medicine and a residency in internal medicine at Northwestern Memorial Hospital in Chicago. She was a resident and later a chief resident and research fellow in dermatology at New York University. Dr. Werth is a member of several prestigious professional and scientific societies, including the American Academy of Dermatology, the American College of Physicians, the American College of Rheumatology and the Dermatology Foundation. She is a Feature Editor for the Journal of Clinical Rheumatology and a member of the editorial board of the Journal of the American Academy of Dermatology. In addition, Dr. Werth is a reviewer for several esteemed publications, including the Journal of the American Medical Association, the Journal of Investigative Dermatology, Arthritis & Rheumatism, the Journal of Rheumatology, and the British Journal of Dermatology.

Moderator
Among her many awards and honors, Dr. Werth is listed in Who’s Who in America and Best Doctors in America. She is an Ad Hoc Reviewer for the Immunology Panel of the VA Merit Review and she was a Panel Chair and member of the Medical & Scientific Committee Clinical Panel of the Dermatology Foundation. Dr. Werth currently serves on the Lupus Foundation of America’s Medical Scientific Advisory Council. Before we begin, let me explain a little about the way our chat will be conducted. This is a moderated chat, which means that I will ask Dr. Werth questions that have been submitted you and other members of the audience. You can submit a question either by sending your question by email to question@lupus.org or by entering it into the light green chat bar at the bottom of the chat window. Likely there will not be enough time to get to every question that is submitted. I will attempt use as many as possible during the hour-long chat. Whenever possible, I will group similar questions together. If I am not able to use your question today, please accept my apology. Without further delay, I would now like to welcome Dr. Werth to our chat this evening. Good evening Dr. Werth.

Dr. Werth
It is good to be here and I look forward to your questions.

Moderator
Ok, let’s begin with our first question which comes from CG in Colorado who says: I heard that there are new laser treatments for scarring after you go into remission but what if you can't get into remission?

Dr. Werth
If you are not in remission, then you should wait for laser treatments that would be used for scarring. Some lasers can be used for active disease, but these treatments are still being studied.

Moderator
The next question is from Tina in Hamilton, Ohio. I have had discoid lupus for 20 years. my nose is fully red and the skin is very porous. I am using aclovate and klaron, and taking plaquenil. Will this medicine work for me and what can I expect for the results?

Dr. Werth
There are a lot of good treatments for active lupus that might work better than the laser for widespread lesions. If the nose lesions are related to lupus, then it should get better with plaquenil and topicals. Some people may require different therapy.

Moderator
This question comes from Rose in Ripley, Mississippi: I have had lupus for nine years I am taken Prednisone and Imuran. I have severe skin rashes and I use an ointment to help with this. It used to be just my face and hands now it covers 80% of my body and nothing seems to be working. Is there something else I could to help control this?

Dr. Werth
There are medicines like plaquenil that may work for the skin. There are also other treatments like thalidomide that may be helpful for the skin.

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Moderator
The next question is from Colorado. Is there anything new that is being tested for the lesions and for the scarring that don't have the major side effects that a lot of lupus medications have?

Dr. Werth
There are new therapies under development for severe skin lupus. There are some more local therapies (like pulse dye laser) that may also eventually play a role for active disease.

Moderator
Our next question comes from Lomar in Kansas City, Missouri. I would like to know with skin lupus is there a cure or anything that can help it and is it common to have several skin problems simultaneously, including hair loss, skin rashes or uncontrollable skin irritation.

Dr. Werth
There is not necessarily a cure, but usually the skin disease can be controlled with therapy. The hair loss can be part of active lupus, and when the disease comes under control, the hair may regrow.

Moderator
Our next question is from Carol in Oklahoma City, Oklahoma. I am having extreme burning and itching of the skin, some skin break outs over the entire body. Is there a topical medication you can recommend that would help?

Dr. Werth
If the entire body is involved, then you may need an oral medicine. Topicals can help in addition. These include topical steroids and other drugs like protopic or elidel, but it is hard to cover the entire body with creams.

Moderator
The next question is from Beverly in Whiting, New Jersey. I am 54 years old, with R/A and lupus. Four years ago I was told I have a mild form of lupus but a severe form of RA. Can you tell me more about SLE and how I know the difference between the RA and a lupus flare?

Dr. Werth
Rheumatoid arthritis can give a severe arthritis with swelling of joints and deformities. The lupus can also give painful joints and it probably requires a good joint exam and evaluation to tell which problem is going on.

Moderator
Nora in San Louis Obispo, California says: I am 21 and my, symptoms started three years ago: fatigue, joint pain, sun sensitively and thinning hair. The most alarming of these symptoms is the hair thinning, which is continuous. Does that mean I will loose my hair? Any cure for hair thinning?

Dr. Werth
Usually when the lupus comes under control, the hair will regrow if the problem is diffuse thinning (and not scarring). Usually people do not lose all their hair, and the problem is one of thinning but not complete hair loss.

Moderator
Our next question comes from the sunshine state. Kathy in Tampa, Florida inquires about the following: I was diagnosed with SLE 9 yrs ago and had a skin biopsy then which was consistent SLE. I went into remission for about 3 yrs, and now have had a flare for almost 4 yrs. The rash seems different this time, didn't respond well to methotrexate; leflunimide and now I am trying Cellcept. The docs say it is classic SLE/Dermatomyositis looking. I am reaching the end of my rope. Is it possible the rash could be something else along with SLE?

Dr. Werth
If the rash looks different, it may be worthwhile to have it re-evaluated clinically and possibly with a skin biopsy. You will have to see your doctor to get suggestions about this.

Moderator
The next question is from Michelle in Ventura, Iowa. My 19 year old daughter has APS. Recently she saw a rheumatologist for the first time and was told she has lupus. The rheumatologist has added plaquenil to the coumadin and baby aspirin she is already taking. She has Livedo Reticularis on her lower legs and my question is will this cause any permanent damage to her skin or muscles, etc.? Will the Plaquenil make it go away or fade? Is there any other treatment you would recommend?

Dr. Werth
Livedo is associated with antiphospholipid antibodies. Sometimes plaquenil can help this. Normally there is not damage to the muscles with this.

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Moderator
Our next question comes from Florida. I do not know if this question is within the realm of dermatology but I get skin sloughing off of the roof of my mouth. I get numbing and tingling first at the site and then the skin sloughs. I only lasts for a day or 2 but then moves to a different area. Is this characteristic of lupus? (I have been diagnosed around 8 years ago but my rheumatologist thinks this is not connected to SLE).

Dr. Werth
People with lupus can get sores in their mouth. There are other medical problems that can give sores in the mouth, so it really needs to be evaluated by your doctor.

Moderator
Our next question is from Jesse in the Bronx, New York. I have lupus and have been getting a lot of marks on my legs which were reddish but are now brownish. Can these marks be removed?

Dr. Werth
As lupus gets better, pigmentation can develop. This often slowly improves. There are some lasers that may help this, but they can also worsen it. It requires some patience because often things to get better over time.

Moderator
Our next question is from Suzanne in New Hartford, New York. I was diagnosed in 1992 with Discoid Lupus through a skin biopsy. I have always tested negative for Lupus Erythematosus. What is the percentage likelihood of discoid lupus leading to SLE?

Dr. Werth
Discoid lupus that is localized to above the neck and where the disease has not progressed for 2 years is unlikely to go on to SLE. If someone has widespread discoid lupus, then the chance may be about 20% of progression. If you have had the disease since 1992, it becomes less likely that it will progress to systemic disease.

Moderator
Our next question comes from Sasha in Maryland. Is it possible to get the rash associated with Lupus in other areas beside the face. Please indicate some place in which you have seen it appear.

Dr. Werth
Lupus can occur anywhere on the skin. Sun exposed areas are more common, but it can be on the arms, legs, and trunk.

Moderator
This question is from Nora in Seattle, Washington. I have SLE, and more recently was diagnosed with rosacea by a dermatologist. There is some talk among rosaceans of steroid-induced rosacea, and at the time of my initial flare, I was taking prednisone for a lupus nephritis flare. Have you seen these types of connections before, and as an extension, do you see treatments for SLE (Cellcept, others) having concurrent positive implications for rosacea?

Dr. Werth
Topical steroids can cause rosacea. Oral steroids can cause dilated blood vessels and redness on the face, but it is less likely to cause rosacea. I'm not aware of any studies using oral immunosuppressives to treat rosacea.

Moderator
Our next question is from Pam in Monroe, Virginia. I have SLE and have had part of my colon taken out and open heart surgery. Every couple of months I will get very tiny small water blisters on different parts of my body almost looks like poison ivy when it first starts is this related to lupus in any way?

Dr. Werth
There are a number of conditions that cause blisters on the skin. There is a form of lupus called bullous lupus which can cause blisters. Your specific situation needs to be evaluated by a physician to make the diagnosis.

Moderator
This question comes to us from Nancy in Charlotte, North Carolina. I have SLE with skin involvement among other symptoms. I have several different kinds of skin problems and my rheumatologist attributes them all to SLE. However, my dermatologist has tested some and they do not come back Lupus. Can you please describe some of the types of skin problems a person with SLE can have besides the typical discoid lesion?

Dr. Werth
There are a number of types of skin lesions seen in skin lupus. They can look quite different. Examples are ring-worm or psoriasis-like lesions, blisters, deep nodules. Normally a skin evaluation will clarify whether your lesions are lupus or something else.

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Moderator
Our next question is from Tonya in Richmond, Virginia. I'm 34 and was diagnosed with lupus about a year ago. I just finished a course of prednisone, and am still taking plaquenil and tramadol. I don’t have the butterfly rash on my face, but I have some acne, which is most visible under my nose, on my mouth and on my eye lids. They hurt to touch and are sometimes itchy. Are they caused by the lupus or the medication or both?

Dr. Werth
Prednisone can cause acne. The other possibility is that you have lupus or a different condition in these areas.

Moderator
The next question is from Florie in Port Charlotte, Florida. I am a 50 year old female with lupus for 3 years and on plaquenil. I don't like seeing gray hair and use hair dye. My scalp will itch afterwards. Is there a solution to any other hair dye or do I just suffer the consequences?

Dr. Werth
Some people are allergic to hair dye. It is possible to be tested to see if you are allergic to the chemicals. If so, you might try a less permanent dye, but it can be tough to find the right solution.

Moderator
Our next question is from Dianna in St. Louis, Missouri. My question is that I have tumid lupus, and all the doctor gave me was Locoid Lipocream. I have found that this cream does nothing for my rash behind my ears and on my neck. Is there something else I should be given? Also will tumid lupus turn into systemic lupus?

Dr. Werth
Tumid lupus can often be improved with plaquenil. Tumid lupus usually is not associated with systemic lupus.

Moderator
This question is from Timeka in Charlotte, North Carolina. What is another drug that can be used for Lupus Skin flare ups as well as systemic Lupus other than Plaquenil. I am currently on 2000mg of CellCept, which is not helping my skin at all. I am experiencing more skin flares than ever since this summer when I had a adverse reaction to the Plaquenil.

Dr. Werth
Skin lupus can be treated with chloroquine in some people who don't tolerate plaquenil. If CellCept doesn't work, there are other immunosuppressives. For severe forms of scarring lupus that don't respond to other therapies, thalidomide can also help.

Moderator
We are approximately half way through our chat time. The next question is from Jan in Oak Park, California. I was diagnosed with SLE six years ago. Approximately two years ago an itchy rash developed on my back. The affected areas were biopsied and tested negative for lupus. My dermatologist is perplexed and every prescription has failed to help stop the itching. Is this rash still quite possibly caused by the Lupus? The rash does get worse when I am in the sun.

Dr. Werth
Usually a biopsy from a lupus lesion will show lupus under the microscope. It requires looking at both the skin and biopsy to come up with the best diagnosis when things to get better.

Moderator
The next question is from KB in San Antonio, Texas. Is it possible for someone with SLE to develop rashes on other parts of their body (besides the butterfly rash) for no apparent reason? I have a blotchy rash that's developed only on my upper legs and gets worse after I take a shower.

Dr. Werth
People with lupus can get rashes anywhere on the body. There are also non-lupus rashes that occur in lupus patients. There are many causes of blotchy rashes.

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Moderator
This question comes to us from Anthony in Newark, New Jersey. i suffer from discoid lupus and would like to know if there is any treatment that can stop or slow down the spread of alopecia in the scalp. the lesions are gradually getting larger which is leaving terrible scarring in my scalp.due to the excessive hair loss I'm beginning to suffer deep depression over it. is there anything that can be done to help?

Dr. Werth
Sometimes injections of steroids help. I would have to know what you've been on in order to know what could be added. You should seek treatment.

Moderator
Our next question is from Carol in Washington. Any advice on how to handle extremely dry painful skin that cracks and bleeds on feet & hands all year round? I have tried vaseline, Aquaphor and Eucerin creams & ointments.

Dr. Werth
There are many causes of this pattern on the hands and feet. It doesn't necessarily sound related to lupus. This should be evaluated to make sure you aren't allergic to something. Sometimes topical steroids can be helpful.

Moderator
The next question is from Katie in Mississippi. I have the best doctors around here. I've had SLE for about 8 years. In the past two years my skin has been involved and the traditional treatments give no relief. I cannot take plaquenil anymore because I suffered eye problems as a result of taking it. What can help me or what advice do you have? My doctors have tried for two years.

Dr. Werth
Treatment can include immunosuppressives or thalidomide, if you haven't responded to plaquenil or can't take it any more. Sunscreens and sun avoidance are extremely important in lupus. There are some better sunscreens coming on the market that contain Mexoryl. People who have lupus should consider using sunscreens every day.

Moderator
The next question is from Fran in Columbia, Maryland. Since early summer I have had daily skin outbreaks (thorax & extremities) with constant itching, even inside my ears itch. Prednisone pills did not help. Prednisone creams relieves the itching and make the raised rash and redness go away for a day. I worry about thinning of the skin, while using so much cream. Should I be seeing a dermatologist in addition to the rheumatoid specialist? Fran

Dr. Werth
Plaquenil can sometimes help the skin when topical steroids don't work. Often prednisone does not help the skin very much.

Moderator
The next question is from Mason in Michigan. Is there any way to recover the sunk in pits left from Lupus lesions? Is there any way to prevent this?

Dr. Werth
It is difficult to repair pits. Some people can have laser treatments, but you have to be careful not to have the lupus flare with such treatments. Prevention involves getting the skin lupus under control to prevent further scarring.

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Moderator
This question is also from Michigan. What is your opinion or experience with the use of Elidel for Lupus lesions? I have Lupus Nephritis but the skin is now affected.

Dr. Werth
Elidel or protopic can help as adjunctive therapy. Usually you will need other therapy in addition to control the skin. This can include topical steroids if the skin is not too severe.

Moderator
The next question is from Lem in Minnesota. I have a problem with hives when I get nervous and am wondering if there is a medicine to take for this? I have a special event where I will definitely be nervous and don't want to have blotches.

Dr. Werth
Hives can be associated with lupus. Occasionally people even have a condition that looks like hives that is actually a form of vasculitis. For normal hives, which itch and last less than 24 hours, sometimes antihistamines can be helpful.

Moderator
This question comes from Philadelphia, Pennsylvania. I was wondering , when I go out in the sun I get a rash could this be a sign of Lupus?

Dr. Werth
The sun can trigger several different types of skin rashes. You should be evaluated by a dermatologist, who can help evaluate the rash. In addition, blood work might help see if there are any changes to be concerned about. One possibility is to combine plaquenil with quinacrine. Quinacrine can only be obtained from compounding pharmacies, and sometimes people with photosensitivity do better with the combination.

Moderator
The next question is from Louisiana. I have been diagnosed with subacute Lupus. I am extremely photosensitive. I have lived in the dark for over 10 years and can't expose myself to sunlight. I can use low wattage lights in the home but they burn me and I am heat sensitive. Thalidomide has been tried, without success and now CellCept is recommended. Most doctors state they have not seen a photosensitivity as extreme as mine. I was to enter the program by Dr. McGrath but that was destroyed during Hurricane Katrina. This photosensitivity with the ongoing lupus symptoms have caused me to become very isolated and I travel out only at night. I am on an anti arrhythmic drug and we feel I have to continue this, there being no alternative that would work as well and the other drugs may also contribute to the photosensitivity. Any suggestions would be appreciated. Also when the face turns red and burns, then lesions appear. Pustule, hurting and burning. A Medrol pack given for surgery recently cleared the face but

Dr. Werth
One possibility is to combine plaquenil with quinacrine. Quinacrine can only be obtained from compounding pharmacies, and sometimes people with photosensitivity do better with the combination.

Moderator
Our next question comes from Connecticut. What should I do if none of the treatments I am receiving for SLE or skin lupus?

Dr. Werth
There are a number of centers where new therapies are being evaluated. In order to develop new treatments it is important for people who are not doing well to seek out centers that are developing and working on these new therapies. There are also a lot of studies that are being done to better understand the genetics and science behind why people get lupus.

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Moderator
The next question is from Oregon. Is there any way to tell the severity of a skin flare or measure disease activity.

Dr. Werth
We have recently performed studies that will allow us to measure how bad skin lupus activity and damage is. This will hopefully allow us to better evaluate how well new treatments are working for the skin.

Moderator
This will be the last question for this week's chat. This question comes from Colorado. Is there any way to prevent or minimize photosensitivity in lupus?

Dr. Werth
The best thing to do is to avoid the sun if you know your skin or systemic lupus flares with sun exposure. It is clear that window glass blocks the shorter UVB wavelengths of light, but longer wavelengths can also cause problems for some patients. Therefore, using the newer Mexoryl-containing sunscreens can help protect against the shorter as well as longer wavelengths of light which can make lupus flare.

Moderator
Unfortunately, that’s all the time we have for questions for this session. We would like to thank Dr. Werth, Chief, Division of Dermatology, at the Philadelphia Veterans Administration Hospital. We greatly appreciate her time. This is our last chat for 2006. Please check www.lupus.org after the new year to see the date and topic of our next chat. Thank you for joining us.

This concludes today's chat.

 

 

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