on July 18, 2013

Dr. Werth has had many leadership roles in autoimmune skin disease, including as current president of the North American Rheumatologic Dermatology Society. She is co-founder of the Medical Dermatology Society, and a recipient of their lifetime achievement award.

She is recognized internationally for her expertise in dermatomyositis and served for seven years on the Medical Advisory Board of The Myositis Association.

Aisha Morrow, TMA:  Dr.Victoria 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, a member of many prestitious scientific organizations, an editor for the Journal of Clinical Rheumatology, and a member of the editorial board of the American Academy of Dermatology. She is a former member of the medical advisory board of The Myositis Association.Dr. Werth is with us today to answer your questions about the skin problems associated with myositis, and we ask you to confine your questions to that subject. She has received a great many questions in advance, so if you are attending this discussion, you may choose to see if your question is answered before submitting it. Please join us in welcoming Dr. Werth.

Dr. Werth:  Thanks for having me.

TMA Member:  I have a couple of what I call ‘skin calcifications’ on my arms and hands. They don’t hurt however, they are a little unsightly. How do I treat them and is there any way of preventing them?

Dr. Werth:   There is no easy way to prevent skin calcifications. Sometimes aggressive treatment of dermatomyositis may be helpful. There is no easy way to treat them. Sometimes cutting them out can be helpful, but that is not a good approach if you have many of them.

TMA Member:  I have been on methotrexate and on and off of prednisone for seven years. My blood work is normal, but my arms have a smooth reddish rash. I don’t think it looks like the rash I had seven years ago, Is it possible it is something else? I am right handed and it is definitely worse on my right arm.

Dr. Werth:  It still could be related to your dermatomyositis. The muscles can be better but the skin rash persist. It would need to be examined by a dermatologist or rheumatologist to confirm.

TMA Member:  I am a 51 yr old female diagnosed with DM in 1993. At the onset I took 75 mg/Prednisone daily tapered over 2.5 yrs. I took MTX for 16 yrs. I’ve tried azathrioprine, cyclosporine, cellcept, Rituxan and am currently on 10 mg/Prednisone daily, Myfortic (coating makes it tolerable) and IVIG every 8 wks.My skin rash has been flaring for probably at least 7 yrs. It has been very moderate to severe for most of this time. Approx spring 2011 it was completely out of control where I was put on 40 mg. Pred/divided and Thalidomide. Unfortunately, I was unable to tolerate the Thalidomide after about two wks. I also developed steroid myopathy and was tapered to 20 mg. Once I was tapered below the 20 mg, the skin rash has reappeared and is once again marching onward in severity. At the peak, I was unable to sleep, lost most of my hair, was bright fuchsia, skin was unbelievably itchy. An itch that was never relieved. Skin was incredibly dry and scaly, raw, often cracked and bleeding. It also hurt.I am incredibly frustrated and any advice would be not only welcome but I would be forever grateful.

Dr. Werth:  Sometimes the rash can improve with plaquenil. The dose of CellCept might need to be as high as 3000 mg/day. IVIG works best if given every 4 weeks, so if you get better for a while and then worse before the next IVIG treatment, you might need to get the IVIG more often.

TMA Member:  I developed my DM 19 yrs. ago at 65. Three yrs. later I was free of muscle and skin symptoms except for an inflamed scalp present to this date. However, two years ago I was diagnosed having nummular eczema and Grover’s disease. Have these latter two any connection with DM and how do I get rid of these skin problems

Dr. Werth:  Was a biopsy done to confirm eczema and Grover’s? If so, the new skin problems are not usually associated with DM, but can be relatively common problems. Treatment is usually with topical steroids.

TMA Member:  I have had DM for over 3 years and am currently on Prednisone, Methotrexate, Cyclosporin and IvIg. The muscle side of things has settled down as much as it is going to, but my skin is still a problem. While the red rash has abated I look approx. 25 years older, my skin around my face, neck and chest has sagged and gone soft and flabby, as if all the glue (which I’m assuming is collagen) has let go. Friends who haven’t seen me in a while don’t recognize me at all and are totally shocked at my appearance. I would like to at least get an eyelid tuck so I don’t have to make such an effort to keep my eyelids open but my doctor says while I’m on steroids I should avoid any surgery. (I am currently down to 7mg of steroids, the lowest I think I can get without other symptoms taking over again). I don’t want to do anything that is going to make matters worse…is there anything I can do to improve this situation and how low do I have to go on steroids to make surgery a possibility if that is the best option. I live in a hot tropical climate but try to stay out of the sun as much as possible. Any advice would be much appreciated. Thank you so much

Dr. Werth:  The outcome of surgery will be better if you can get off steroids. It might be worth trying plaquenil. Sometimes if plaquenil doesn’t work, then quinacrine can be added to plaquenil. Another possible treatment for skin if methotrexate isn’t working is mycophenolate mofetil. Sometimes the dose of methotrexate needed can be 20 or even 25 mg a week.

TMA Member:  I am a DM patient. During the winter and early spring I have these skin problems on my hands. My cuticles grow more aggressively and need trimming often, but more importantly my finger tips on both hands become very sensitive. Are these symptoms experienced by other DM patients? The sensitivity subsides eventually.Thanks for your comment.

Dr. Werth:  There is often fissuring of the fingers with increased skin activity and this can be painful. You could try topical steroids when it is more active.

TMA Member:  Is this typical of PM to start developing sun-sensitive rashes 5 years after diagnosis of the disease? Rashes respond to steroid treatment when controlling elevated CPK and symptoms, but returns when weaned off steroid. My rheumatologist has considered possibility of changing dx to DM, but dermatologist tends to think not typical rashes for DM. Thank you!

Dr. Werth:  If you have a rash that is related to dermatomyositis, then you likely have dermatomyositis that started in the muscle and then spread to the skin. If this is true, then you have dermatomyositis (DM), not PM. The diagnosis of DM in the skin is made by a combination of clinical and pathological findings. If DM, then you might benefit from a change in treatment to include plaquenil with or without methotrexate or mycophenolate.

TMA Member:  1.Recommendations for dry lips and cracking lip corners due to diminished saliva? Redness of skin around the lips? Any natural products without a petroleum base?2. Have you observed IBM patients also having DM skin conditions? Please describe the symptoms.3. IBM patients with red, swollen fingers and cold hands?

Dr. Werth:  Could try vaseline or protopic ointment. Also absorbase or eucerine cream. IBM is not typical associated with DM skin findings. It would be worth having your skin examined by a dermatologist to characterize what you have.

TMA Member:  I was being treated for a plantar wart prior to diagnosis. My DM seems manageable right now. Should I return to my GP and resume treatment of the plantar wart?  It is not restricting my activities.

Dr. Werth:  Would be fine to continue treatment of your warts. They are due to a virus and might spread to more areas on your skin if not treated.

TMA Member:  Is there anything I can do to tone up the skin where the muscles are wasting away?  My skin is puckered and looks terrible.

Dr. Werth:  It might be good to try to do some exercise, if your doctor feels you can do them. There is no easy answer for how to improve puckering.

TMA Member:  I have “Amyopathic” DM with no Mi2 or Jo-1 antibodies but high ANA. Muscle enzymes always normal and responding well to lower dose prednisone and plaquenil. First flare was post-partum and resolved spontaneously after weaning. Second flare was 7 years later (now). Given this scenario, is the risk of unexpected ILD and/or malignancy still high?Also, is there any chance a stealth infection might be mimicking DM in ADM? Will we someday discover that ADM and DM are two totally separate clinical entities?

Dr. Werth:  The risk of ILD is likely lower over time, but that has not been formally studied. After 3-5 years, the risk of malignancy decreases to close to normal. The increased risk of malignancy is normally not seen in younger patients.

TMA Member:  Things I can do for sores on scalp and not getting an infection?

Dr. Werth:  The scalp is a tough area in DM. We treat with topical steroids. If that doesn’t work, then systemic medications that may help include hydroxychloroquine, methotrexate, or mycophenolate mofetil. It is not common to get infections in the scalp.

TMA Member:  Many “Dermies” swear by coconut oil on their skin to help with the dryness, itching and skin rash. Do you recommend this? Is there any reason not to use coconut oil?

Dr. Werth:  Coconut oil will not hurt your skin. There is no reason not to give it a try.

TMA Member:  Are there any bath soaks that help relieve the DM rash? Baking Soda? Epsom salts (Magenisum sulfate)? Oatmeal? Bleach (used for eczema)? Any natural products you recommend for topical application? Aloe vera gel? Arnica? Nutmeg oil?Hospitals use vinegar (acetic acid) compresses. How does vinegar help the rash? Do any of the topical treatments attempt to disrupt the skin microbiota? Could the DM rash be caused in part by reactions to surface antigens on the skin?

Dr. Werth:  Oatmeal baths won’t hurt. You don’t want to dry out your skin and this is not eczema, so no evidence that bleach will help. Would use topical steroids and good moisturizer. Vinegar is good for infections, but DM is not caused by a skin infection. There is no evidence that skin microbiota are affected by topical treatments. It is likely that some skin antigens are involved, but there isn’t much known about why skin DM occurs.

TMA Member:  Is there any correlation between nickel allergy/sensitivity and DM rash? Are many DM patients nickel or heavy metals sensitive? My first flare started with a reaction to metal grommets on tight jeans, then spread to 60% of my body. I’ve had nickel allergy since adolescence.

Dr. Werth:  There is no known correlation between contact allergies and DM. The lateral thigh is a common area for DM to be involved.

TMA Member:  I’ve read that certain drugs can trigger dermatomyositis, for example statins. If you stop taking the statin will dermatomyositis lessen or stay the same instead of progressing?

Dr. Werth:  If DM is from statins, then stopping them might be helpful. It is hard to link medication exposure to DM unless the rash starts shortly after use of a new medication.

TMA Member:  I am newly diagnosed with dermatomyositis. My doctor told me and I have read to stay out of the sun. I also read that someone looks 20 years older because of the disease. I am interested in any information regarding this part of the disease. In the past I did all of my on yard work, played in the pool with my son, etc. Are all of these a thing of the past for me? I look at my hands now and they looked really old. Don’t know if that is normal for a 51 year old woman or if it is the disease with loss of muscle in my hands, etc.

Dr. Werth:  The sun can trigger a flare of DM. Sunscreens and sun avoidance can be helpful. The disease does not frequently make people look much older if the skin alone is involved. It is discouraging to not be able to do the activities you enjoyed before, but if you can do the yard work or play at the pool in the early morning or late afternoon and wear sun protective clothing, it still is possible to do things you enjoy.

TMA Member:  What can I use on discolored cuticles? I am on Methotrexate and Plaquenil, which helps.

Dr. Werth:  The main thing is to use topical steroids when the skin is inflamed. Once no longer inflamed, then sunscreen will help prevent the area from getting even darker. Treating the DM with the medications you are on is a good idea, since control of the skin problem should help prevent more discoloration of the cuticles.

TMA Member:  Hi Dr. Werth: Currently I have resistant Dermatomyositis to traditional medications. My skin has not improved since July 2012 and keeps getting worse each month. I was diagnosed in February of 2012. I just started IVIG treatments last month along with staying on Cellcept, Hdroxycloriquine and prednisone. My question is, I have black lines under my eyes from the inflammation for so long and can’t tolerate any and all UVA/UVB direct and indirect light. Will this blackness under my eyes ever go away once things are under control or is there a chance the the damage to my face due to the inflammation and and UV exposure is irreversible?

Dr. Werth:  The blackness can improve over time, but sunscreen and cosmetics should help prevent further pigmentation. I have seen this improve over time.

TMA Member:  I have DM sine myositis for over10 years. I’ve been in remission at least four times, but flare up every time I am taken off my medicines. I’m on Mycophenolate, Quinacrine and chloriquine and am in remission currently. Why can’ t I continue with the meds? Is there a maintenance medication?

Dr. Werth:  You can continue on meds – it is normal to try to find the lowest dose that will control the disease. Some patients require maintenance medications to prevent flares.

TMA Member:  I have I am on 8mg medrol daily, after 3 years of up to 60 mg’s and tapering, and 3000 mg cellcept daily. I also get IVIG infusions every 5 weeks for 1&1/2 years. My skin on my arms bruises and tears easily. This only happens on my arms, although any cut elsewhere on my body takes longer to heal now, and leave a larger, darker permanent scar. The slightest bump or brush of my arms causes instant marks of deep red welling that takes weeks to go away. A harder bump and the skin tears. It sometimes takes 2 days to clot enough to heal over that I can expose it to air to let it dry enough to stay closed. If i put a bandaid or tape on my arms, taking it off either pulls my skin away, or causes the bruising effect. My skin has permanently darkened from all the bruising and I always wear long sleeves to hide their appearance. I am not on any blood thinners. Is this from the disease or from the medications I am on?

Dr. Werth:  It may be that the medrol has thinned out your skin and is causing the easy bruising and tearing. You should do as much as possible to get to the lowest dose of prednisone possible. You can also use nonadhesive bandages on your skin to try to protect the when there are sores present.

TMA Member:  Thank you for sharing your time and knowledge. I was diagnosed with DM 8 years ago at Mayo and would like to know if there is any place or any doctor in the southeast who is doing research; is there anyone who is knowledgeable about DM? I had heard that there was a clinic at Johns Hopkins but I was wondering if there would be anything or anyone closer?

Dr. Werth:  There are experts in a number of southeast cities, so would be helpful to know where you are located exactly.

TMA Member:  Thank you for your time and knowledge. I have DM. I have sores with hard cores on my head which I’ve had for months and months. There are two spots which have never healed. I am also developing sores with lumps under the scalp. I have steroid salves (3 different types) but am worried about putting all that steroid on my scalp. What causes these sores to develop and is there anything to be done which would ease the itch and the pain? I always wear a hat and use plenty of sunscreen.

Dr. Werth:  The sores can be due to itching and scratching. Sometimes the skin is fragile and can form sores. The topical steroids are good to use if they help and the scalp is not usually an area we worry about in terms of thinning of the skin from the steroids. The itch can be treated with atarax or zyrtex by mouth. This is a frequent complaint in dermatomyositis.

TMA Member:  Thank you for your time and knowledge. Is there any relation between the skin sores and the nerves? Is there a reason the itching and stinging of the skin gets worse at night?

Dr. Werth:  At night there are less stimuli distracting you from recognizing the skin symptoms, people frequently have more itching and sting at night than during the day. There are nerves in the skin that likely contribute to the itch.

TMA Member:  Thank you for your time and knowledge. Has research found anything new concerning DM?

Dr. Werth:  The main new things relate to making sure other organs are not affected (lungs). There is a need for more basic research and new treatments for the disease, and the skin is often very troubling for people.

TMA Member:  Has the class 4 laser been tried as a treatment for skin problems?

Dr. Werth:  Lasers have not been used to treat DM.

TMA Member:  What is the effect of sun on dermatomyositis patients?

Dr. Werth:  The sun can trigger flares of DM in the skin. We know that the sun can bring inflammatory cells into the skin and also alter skin antigens. It is clear that sunscreen, sun clothing, and sun avoidance are important for people who notice that their skin disease flares when they go in the sun.

TMA Member:  Are there supplements or vitamins in addition to “one-a-days” that we should or shouldn’t take to help manage our skin and/or lung issues? (ex. vitamin D, biotin, etc)Is there a way to avoid additional concerns such as Raynaud’s?

Dr. Werth:  A regular multivitamin is fine. If you avoid the sun, then some supplemental Vitamin D is probably a good idea. You should be careful to avoid herbal medications that can stimulate the immune system, such as green algae, spirulina, and echinacea.

TMA Member:  Why do patients develop bollous DM?

Dr. Werth:  Bullous DM can happen if there is a lot of inflammation in the skin between the first and second layer of skin. This can cause the skin to separate and sometimes causes ulcers or even bullous lesions to form.

TMA Member:  What can I use for my scalp it is bright red, hot and very itch?. I have DM.

Dr. Werth:  I would recommend use of topical steroids and oral antihistamines. If that doesn’t work, you might need systemic medications like hydroxychloroquine or immunosuppressives like methotrexate or mycophenolate.

TMA Member:  Is there any way to address/ameliorate cuticle overgrowth?

Dr. Werth:  The main help is to control the disease activity with the medications I’ve mentioned, such as hydroxychloroquine, methotrexate, or mycophenolate. It might be helpful to use topical steroids as well.

TMA Member:  I have PM. With years of immunosuppressants, including prednisone, my skin is very thin. I bleed easily. Any solution?

Dr. Werth:  There is no easy answer. If you can lower prednisone the skin might thicken over a long period of time. Some topical medications like Lac-Hydrin might be helpful in thickening the skin.

TMA Member:  Is sun sensitivity common with IBM? I get a rash on my wrists and knees.

Dr. Werth:  Usually sun sensitivity is seen with DM, not IBM. You might want to have a dermatologist examine your wrists and knees to make sure you don’t have DM.

TMA Member:  I always thought that I was taking methotrexate for the muscles and plaquenil for the skin. However, I gather that methotrexate also works on the skin? My doctor took me off plaquenil and lowered the methotrexate dosage. My skin erupted with sores, itch, scabs etc. Could the lowering of the metho had anything to do with this? Thank you.

Dr. Werth:  Methotrexate works well for many DM patients with skin disease. The worsening of your skin could be from either stopping the plaquenil or the lower dose of methotrexate.

TMA Member:  I have PM and Sjogrens. Am on Methotrexate 0.4cc/1x week & Plaquinel (generic) plus eye drops, etc. for Sjogrens. PM diagnosed by Neurologist 5 – 6 years ago. Initially treated with high dose Predisone (infusions), which brought PM under control. Currently not on Predisone.I have intermittent rashes. I saw a dermatologist several years ago, who took a biopsy & the results came back consistent with DM. My neurologist & my rheumatologist both said I can’t have both DM & PM at the same time and indicated that I have PM.I admit, as far as the muscle weakness & the skin rashes, the muscle weakness is worse.Do you think it would be possible that I have an overlap condition where I could have both PM & DM at the same time? Or have you heard of that?Thanks,

Dr. Werth:  I think it is likely you have DM. Many DM patients have both muscle weakness and skin rashes.

TMA Member:  I am a 48 year old 6 year DM patient, and have found that I have little hair growing on my lower legs since I have been diagnosed. Is this something that is associated with DM or is this the side effect of medications; and if so which medications would have this effect?Thank you.

Dr. Werth:  This is hard to answer – I don’t know which medications you are on and there are many causes for hair loss in DM patients.

TMA Member:  What do you recommend for dry, cracking lips (especially the corners)?Any natural topical cream or salve without petroleum as the base?Do you often see minor skin problems with IBM patients? If so, please describe.Dr. Werth:  IBM patients can get minor skin problems, but there are not the same type of skin problems seen in IBM and is DM.

Aisha Morrow, TMA:  This concludes today’s discussion. TMA would like to extend a special thank you to Dr. Victoria Werth for spending the time to answer your questions. Thanks to all the members who participated.

Dr. Werth:  I have enjoyed all the excellent questions and hope that my answers have been helpful. Thanks.