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Dermatomyositis: Myositis And The Skin

Ruzanna Harutyunyan's picture

Dr. Sternberg’s presentation focused on how myositis affects the skin in a specific form of the disease called dermatomyositis. She also spoke about skin symptoms that were relevant to those with inclusion body myositis and polymyositis. Lastly, she highlighted different ways to care for your skin, which was a topic from which everyone in the workshop could benefit.

Dermatomyositis and Skin Symptoms

Dr. Sternberg began the presentation by defining dermatomyositis. She described that it results from an immune-mediated process triggered by outside factors (malignancy, drugs, infectious agents) in a genetically predisposed person.

In the research she described, the incidence of dermatomyositis/polymyositis has been estimated at 5.5 cases per million. The research she discussed finds that women are affected two times more commonly than men with the two peak ages of onset occurring at 5-10 years old and at age 50.

Dr. Sternberg described that when someone has dermatomyositis, the skin symptoms usually precede the muscle symptoms, which makes myositis challenging to diagnose. Without the muscle symptoms, it can be difficult for the doctor to identify what the cause of the skin symptoms (usually a rash) might be. Dr. Sternberg also pointed out that the severity and pattern of skin symptoms does not typically predict or correlate with the presence of the systemic involvement.

Your skin symptoms may get better or worse; however, your muscle symptoms may stay the same. Or, you may feel weaker but the skin symptoms may not get any worse. Myositis can affect the skin in a number of different ways, which are described below.


A rash is a common symptom of dermatomyositis. Most rashes occur in exposed areas and most patients find that the rash is often itchy and intense. Quality of life is often affected by a rash, especially if it is very visible on the face or causes severe itching. Additionally, an itchy rash can cause loss of sleep.

A recent study by Hundley et. al. was the first study to address the effect of the skin manifestations on Quality of Life Studies of patients with dermatomyositis. Prior to this study, most researchers traditionally focused on the impact of the muscle disease on quality of life. The data showed a profound impact of the dermatologic aspects of dermatomyositis, especially pruritus (itchiness), on quality of life.

A type of rash that those with myositis may experience is poikiloderma, which is a mottled, blotchy skin coloring. It tends to occur in sun-exposed skin. It is a combination of atrophy (skin thinning), telangiectasia (tiny blood vessels), and pigmentary changes (both hypopigmentation and hyperpigmentation).

Another skin symptom of myositis is called the “shawl sign,” which means that the person has poikiloderma in a V-shaped distribution over the neck, upper chest, and back.

Hand Involvement

Dermatomyositis is unique in that it tends to affect the skin over the joints, while other diagnoses, such as lupus, tends to affect the skin between the joints. There are several myositis symptoms that are visible on the hands.

Nailfold changes are a common symptom of myositis. The nailfold changes may be present as the first or only skin sign of myositis. It can look like ragged cuticles, or roughness, thickening, hemorrhages, and necrosis of the cuticles. There can also be cracking and fissuring of the distal digital skin (the fingerpads), often referred to as “mechanic hands.”

Gottron’s Papules (also known as Gottron’s Sign) is another symptom. This is described as a skin finding that is accentuated on bony prominences, especially knuckles, but also on elbows and knees; it causes them to become thicker and scaly.

Other Symptoms

Eye Involvement

Eyelid swelling may be an early sign of myositis. The “Heliotrope Sign” is another symptom of myositis related to the eyes. It may cause a subtle discoloration and mimic allergic reactions, but is less variable from day to day than most allergies.

Scalp and Hair Loss (alopecia)

Those with myositis may experience skin symptoms of the scalp. Symptoms may start out as a scaly scalp or diffuse hair loss. The hair loss may be temporary or permanent. The hair loss is often due to scarring of the scalp skin, loss of circulation to the hair follicle, and an autoimmune reaction. Hair loss often follows a flare of systemic disease or could be related to a side effect from medication.


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Calcinosis is another symptom of myositis. It is usually seen in juvenile dermatomyositis and ranges from 44% - 70% vs. 20% in adults. Calcinosis refers to hard, irregular nodules that may drain a chalky white material on the skin. It typically occurs 2-3 years after onset and favors sites of trauma. It can be painful and may become infected.

Calcinosis most commonly involves elbows, knees, shoulders and buttocks, and it is often associated with a delay in starting steroid therapy or in treatment-resistant disease.

Medication Side Effects

Even when the muscle involvement and other systemic complications are completely controlled by medication, the skin disease may continue to be present. It may not be necessary to completely make the skin lesions "disappear" by giving increasing doses of immunosuppressive medications. Rather, most doctors prefer to treat the patient symptomatically. For example, treating the itch of a rash can have a large impact on the individual’s coping with myositis, even if the visible rash cannot be cured.

Some of the medications used to treat myositis can cause side effects related to the skin.

With systemic steroids, some of the short term side effects include:

• Mood changes
• Nervousness
• Insomnia
• Weakness
• Fluid and salt retention (swelling)
• Increased appetite, weight gain
• Amenorrhea (loss of menstruation)
• Increased infections
• Hyperglycemia (elevated blood sugar)
• Decreased wound healing
• Weight gain, particularly around midsection and upper back
• Rounding of your face (moon face)
• Fatty pad or hump between the shoulders (buffalo hump)

Osteoporosis is another symptom of steroids and Dr. Sternberg talked about this symptom in depth. She described that most of the significant demineralization in the bones occurs in the first 6-12 months of treatment. The bones most prone to osteoporosis are the ribs and the vertebrae (specifically the trabecular bone). She mentioned that the affects of osteoporosis are not minimized by alternate-day dosing, as some people believe. She highly recommends that individuals on steroids take calcium and vitamin D supplements, and see their rheumatologist for more information.

Other symptoms include skin atrophy (thinning) and hair loss, which may be due to the dermatomyositis itself or as a result of the administration of prednisone or other treatments such as methotrexate.

Skin side effects include:

• Thicker or more dense body and facial hair (hirsutism)
• Thin and fragile skin
• Easy bruising
• Slow healing of cuts, insect bites, and infections
• Acneiform eruptions
• Stretch marks (Striae)

Sun Exposure and its Effects on Dermatomyositis

Dr. Sternberg encouraged everyone to take precautions when their skin is exposed to the sun. The two types of sun rays are UVA and UVB. UVA rays penetrate deeper into the skin, which results in the darkening and pigmentation of the skin. UVA rays can also accelerate the aging process. Chronic, long-term exposure to UVA rays can make the skin appear dry, scaly, spotted, wrinkled, and leathery. The UVB rays are responsible for causing sunburn. Both UVA and UVB rays can cause skin cancers.

The rash of dermatomyositis is photodistributed and photoexacerbated (worsened by sun exposure), yet patients rarely report sun sensitivity. Photosensitivity in dermatomyositis has not been investigated extensively; however, many studies with lupus have been described. For those with lupus, both UVA and UVB rays have been shown to reproduce lesions. This research could mean that similar results would occur with dermatomyositis patients; however, it has not been fully explored yet.

Sun Protection

Sunblock is one way to take precautions against the sun. When looking at the SPF (sun protection factor) of a sunscreen, the SPF measures the ability of the lotion to block UVB rays. An SPF of 15 blocks 93% of rays. An SPF of 30 blocks 97% of rays. Any SPF that is higher than 30 will block decimal points more of a percentage than SPF 30.

Dr. Sternberg gave some additional tips on how to protect your skin from the sun. She described that everyone should take the following precautions:

• Avoid peak sun hours (between 10 am and 4 pm)

• Sunscreen is very beneficial. They work by absorbing, reflecting, or scattering the sun’s rays. The higher the SPF, the greater the protection from UVB rays. Broad-spectrum sunscreens block out both UVA and UVB rays.

• Use broad-spectrum sunscreen with SPF of at least 30 on all sun-exposed areas, even on cloudy days

• Reapply sunscreen frequently; if exposed to water through swimming or sweating, use water-resistant sunscreen; reapply sunscreen every two hours

• Wear protective, tightly-woven clothing, wide-brimmed hat, sunglasses

• Beach umbrellas – good, but remember UV rays can bounce off sand, water, porch decks



I find the rash has gone over most of my body except for my face and back which have been spared so far. So. areas of the body exposed to the sun may cause things to be worse I think the disease is systemic and perhaps the dermatologists don't do a full body examination. Elizabeth
What's a good cream to clear up the Dermatomyosiosis rash?
In order to be out of the sun, I started playing indoor tennis. I find that I am photsensitive to the fluorescent lighting. I prefer not to play tennis bundled up, so I need to know if I am causing my condition to worsen internally when I am reacting to the light with rashes? Also, it doesn't seem to help to use sunblock indoors??? Thank you. Bonnie
Hi. Photo sensitivity is a major isssue for me as well. If anyone responds to you Bonnie let me know. [email protected] . It seems to me that the type of light doesnt matter.....itll find me. Almost as if it is attracted to me. i know that sounds a lil odd but being 36 and recently diagnosed with 3 different heart diseases all due to Dermatomyositis isnt normal, thats for sure.
I agree whole heartedly, I too am affected by any light, whether it's a 60w bulb in my reading lamp or the sun. It causes my shawl rash to flare, and my cheeks to get flushed and then the sweating starts. My rheumy actually told me once not to worry about the sun exposure as there was no proof. I am living proof, there are some of us who cannot tolerate light at any degree for any length without causing an increase in symptoms and NO WAY can I take it if my disease is in a flare. I keep the house dark most of the day with blinds and only really enjoy going outside either early in the AM or later in the PM after the sun is starting to go down. We gotta do what we gotta do and stick together, I don't know if any of these doctors really have a clue about us or how we are effected by anything.
WOW...I am finally finding a few discussions here that are more informative than what I have gotten in over a year of treatment at my Rheumy. How many of you out there have DM? I am currently only seeing a rheumatologist, with a twice a yr ck up for a pulmonary function test, I feel like I need a more thorough workup, are any of you seeing any of the Myositis specialists at any of the myositis clinics (Mayo, NIH, Johns Hopkins etc) or do you have any Dr's you feel comfortable steering me towards or away from?
I can recommend someone in Phila. area if that interests you. I have a dermatologist and pulmonologist at HUP that direct my care.
I have had the rash symptoms on my hands, scalp, back, and buttock. I also had the muscle weakness in my upper and lower body. It took me months to get diagnosed with skin and muscle biopsies. I have been on varying doses of prednisone over the past 5 months. The rash did not get better and sometimes the scalp rash can drive me insane. I tried T gel shampoo which barely helps. Dermatologists either dont know enough about this disease or dont really even give a damn. The rhematologist has helped with slight improvement of my upper body, but my legs are still impaired. This disease is miserable.
About 6 months ago, my daughter had been complaining of her knees hurting when she would run or go up or down stairs. She is 13. I truly thought this was not a big deal, but soon after a strange rash appeared on one of her arms. I made an appointment with her doctor and before the appointment I looked on webmd which gave a few possibilities that I felt I needed to mention to her doctor. Juvenile dermatomyositis was one of them. The doctor quickly dismissed my question stating that any internet search was not worth my time or hers. She was diagnosed with shingles for the rash, and vague syndrome for the knees. Backing up a couple years....when she was 7, I had removed two different tiny lumps which looked like rocks from her face and forehead. Then most recently, one from her back and one from the top of her scalp. I found out that these "calcium deposits" if thats what they are, are also symptoms of this disease in question. So I would like to hear from someone who has advice
I was diagnosed with Dermatomyositis, Sjogren's, Psoriasis, and Sleep Apnea three years ago after continuous positive blood test results and Biopsy. I have been mainly treated with MTX, IVIG Therapy, Deflamatory meds, and Pain Meds, and on CPAP. I can not have Prednisone because of a strong genetic predisposition for Lung, colon, and stomach cancer. My DM skin signs are Gottron Papules on my knuckes and phalangies and elbows, V Sign on my neck and chest area, Patches over both knees, and lately joint involvement in the knees and ankles, Heliotope on over my upper and lower eyelids. My skin signs worsen with sunlight and is worse on uncovered sections like my forearms that develop these blistery things that look like mosquito bites that never go away until the Dermatologist burns them off. They still come back, but in other spots. The UVB radiation from flourescent lights bother my eyes and skin to the impact I have to shut them off in my office, and where polarizing prescriptioned sunglasses even inside where flourescent lighting is strong. As noted this type of lighting produces UVB, but it depends on how close you are to it and how strong the lighting actually is. Office buildings have a tendacy to make the offices look like they have stadium lighting. Just driving in the car inflames the Gottron papules on my hands that causes them to spread. I am on 1 mL of Injectable MTX per week, and just finished IVIG Therapy where the medication require by my body for that period cost almost $1 million dollars. Physical and emotional stress also has an impact on the myositis and skin affects. It usually starts with an outburst of hives and redness all over my body and then followed by a flare of the DM skin and myositis signs. Based on above different peopl's bodys are affected differently some with more or less impact. The IVIG Therapy took 4 months to kick in before my CPK, AST, ALT, SGOT, etc... came down and was normal after the 9th Infusion, I had 12 infusions. The Skin and Myositis symptoms did not go away, and are steadily getting worse again. I go in for complete bloodwork and DM and Cancer testing again between June and August where I routinely see two Rheumatologists, a Dermatologist, a Cardioligist, a Pulmonologist, a Opthamologist, and I just finished with the Gastrointernologist for upper and lower GI Tests and procedures.
You mention genetic predisposition to lung and GI cancers and the dilemma of taking immune suppressing medications to treat the DM. This is what I am facing,too. My genetic condition is Lynch Syndrome, and my skin inflammation is looking a lot like DM. Have been advised to take MTX for one year, but am afraid of it's immune suppressant effects.
Diagnosed with ILD-Pulmonary Fibrosis in both lungs and Heart Disease (Concentric Hypertrophy in Both Ventricles) along with everything else mentioned i #9. Not doing well at all
To adam gilicirist, take your daughter to another Dr. pronto that will listen to you. I am an RN recently dx with autoimmune disorder by biopsy but have had symptoms for years. My mother also has Dermatomyositis and we both have had lots of lab tests that are negative but have the signs and symptoms. It is not normal for a teenage girl to have that much discomfort in her knees unless she is 20-40 lbs overweight then you think about the stress on the knees. But your daughter is having other skin symptoms that would not be related to being overweight. Go to a Dermatologist first. Perhaps they will biopsy her rash, that is how I was diagnosed. She needs to stay out of the sun for sure as this exacerbates the condition. The internet can be a place of misinformation but if you check out reputable sites and multiple sites and keep coming up with the same type of information you are probably on the right track and her pediatrician is not well informed about autoimmune disorders. Good luck. Have her use Neutrogena's Helioplex sunscreen with both UVA and UVB protection daily when outside they make 55 and 70 SPF.
I am more affected by fluorescent lights than sunlight. My dermatologist told me to use Neutrogena 100, and cover up. I understand the need for both, but there has been too much written about dangerous sunscreens, particularly with high SPF. I've researched and am considering the following: Soleo, Badger, and California Baby. Your opinion, please. Also, does exposure to light sources cause internal progression of the disease? Thank you.
This is an insidious disease and I am stunned that few doctors know how to diagnose it. At age 50 I started with scaling on my ear lobes and flaking of my scalp. Then severe, angry red rashes on neck, face, swelling in my eye lids and peeling of my skin. The disease was cycling with swelling, exacerbation, peeling and starting the cycle all over again. I am a business owner and I have been devastated by the embarrassment this causes in distorting your appearance. After literally seeing probably 25 doctors...rheumatologists, allergists, infectious disease drs., I was semi-diagnosed about 5 years ago by an auto-immune dermatology specialist at HUP.. I have been on methotrexate since 2004 (I also have severe auto-immune hearing loss and wear hearing aids in both ears). I have developed interstitial lung disease and have decreased lung capacity and am supposed to use oxygen all the time but I mainly use it at night. I also have sleep apnea and the oxygen goes through my CPAP. My dermatologist and pulmonologist want me to go on cellcept. I weaned myself off methotrexate three months ago but am getting some symptoms back mostly the excessive flaking of the scalp which appears as super bad dandruff. I get some relief with the scalp using WEN tea tree oil shampoo. However to control the build-up of scalp plaques I really need to wash my hair every day with it and massage the shampoo into the scalp. I have a literal box full of skin and shampoo preps, salves etc. that were hugely expensive prescription items. I wish I could have that money back in my pocket. I am now 60...ten years later...and have learned this disease is pretty much only controlled systemically unfortunately. I am trying to make a decision as to whether or not to try the cellcept. Wrists, ankles and knees hurt and I have fibromyalgia muscle soreness but I have a high pain threshold so will probably try cellcept only if I continue to decline. Hideous, hideous disease. Anybody else get really bad scalp symptoms from this disease? I am still working running 3 businesses and I struggle with severe fatigue as well. My pulmonologist recommends that I go on disability so considering that in near future.
Hi I am responding to your post on JULY 4, 2012. I too suffer from horrible scalp itch and flaking. It is very embarrassing and seems to be getting worse. I've tried different shampoos from my dermatologist and actually made the symptoms worse. So right now I only use Jason (pronounce Jasoon) shampoo made with tea tree oil. It gives me some relief (not total) for only a few hours, then the misery starts over again. I take multivitamins and additional vitamin D for the fatigue seems to keep me on my feet. I take care of my 4 month old grand baby so like you I need all the energy I can get. I just found this site and am thankful that I can talk to others that struggle with the same symptoms. I felt like I was alone for years. I have been diagnosed with this since 2000. And yes I do agree that few doctors are educated to correctly diagnose this horrible disease, unfortunately.
My scalp is driving me mad as I write this. I too am using Jason shampoo and have used about every type of oil and ointment to try and bring some relief. I was diagnosed in 1999. Since then Dermatomyositis has caused devastating symptoms that have transformed my physical appearance drastically. I have been on disability but struggle to make ends meet so I am going to try and go back to work full-time. I am very tired and sore though. I am currently taking Myfortic and IVig. The IVig is causing major headaches and neck stiffness. I have been on as high a dosage as 100mg of Prednisone. Treatments that used to work do not work anymore. It is frustrating and frightening thinking of aging with worsening symptoms.
Have you tried clobetesol solution?
Facebook has a few wonderful support groups and so does dailystrengh.org.
DM w/pos jo1, ILD, anti synthetase syndrome. Please visit the Myositis.org website for info on testing and advancements in treatment options. I have also found great support from the facebook myositis groups I belong to, these are private groups so you can discuss treatments, dilemmas etc without it being made public. Almost 9 years now post diagnosis. Each day is a struggle but I have gotten accustomed to my new norm. Praying daily for all who like myself now find themselves traveling this same path.
I have all these symptoms and am self treating and diagnostics ...