Skin Care for Myositis

Scalp itch is a classic sign of dermatomyositis. Unfortunately, scalp psoriasis can also cause itch – so the first step is to determine which process is impacting your scalp currently. For scalp involvement from dermatomyositis, we recommend strong topical steroid preparations that are able to penetrate the skin – an example is fluocinolone scalp oil (“derma-smoothe) – it is greasy so we have patients apply it at night and wash their hair in the morning. If your anti-itch pills (like doxepin) and your topical steroids are not helping enough, we even use other systemic medications to treat this (such as methotrexate, amongst others).

People who have these sores are often patients with bad skin disease and inflammation along the blood vessels here. The silver sulfadiazine cream you mention helps with wound healing and prevention of infection, but will not help the dermatomyositis itself — for this, we need medications aimed specifically at the dermatomyositis. The rash tends to be worse in the sun, but there are some patients with Raynaud’s who are very sensitive to the cold and can even get ulcers.

I hope you are doing well. Unfortunately, there are no major advancements in the treatment of calcinosis. We continue to try new therapies regularly and there is work going on at Johns Hopkins in this area currently. I very much hope that there will be new options to offer you and other patients in the next few years.

If the tingling is in the skin itself, this could be where you have rash from your dermatomyositis (rash on the thigh is often called the “holster sign”). In this case, topical steroids (such as clobetasol cream or ointment) could help. If you have no rash there, or if the tingling is deeper, I would not relate this to the skin disease of dermatomyositis. For dry skin, we recommend Cerave cream or plain Vaseline after a shower – use warm water rather than hot in the shower (as hot water dries out the skin) – pat dry after the shower and apply your cream or Vaseline.How easily the skin bruises relates to many things: whether you ever took prednisone, how much sun damage you have had, whether you are on any blood thinners, etc. It is helpful to keep the strength/integrity of your skin better with daily moisturizers such as Cerave cream or Vaseline.

Dryness in this area may be related to various reasons, but I would not expect it to be from your dermatomyositis. The fact that you have Sjogren’s could be contributing. For skin breakdown in this area, we often use Triple Paste (which is a barrier paste) several times a day regularly to prevent the skin from fissuring/cracking here, which can be very painful. If this is persistent, then you should have a dermatologist evaluate the area and see how they can help you as this is a common complaint amongst patients in general.

If the roughness is minimal, we typically use a thick layer of Vaseline (thick like frosting, ½ a centimeter for example) under white cotton gloves at night. If the scale is very thick, we often use urea cream (a 20% urea cream can be obtained over the counter at the pharmacy; your doctor can prescribe a 40% version)—this helps to actually reduce the thick scale. Urea cream must also be used in a thick layer under gloves. The reason for using the gloves is that the skin on the hands is thicker than anywhere on the body, and the “occlusion” with the gloves overnight helps the Vaseline or medicine sink in to the skin so it can do its job.

These are reasonable treatments for seborrheic dermatitis. If they are not working sufficiently, a topical steroid can be added to what you are using. This condition has no cure so you will need to use these medications over time in order to keep the rash in check.

The first question would be whether you ever took prednisone – this can make the skin very thin and more likely to bruise, etc. If not, other factors play a role, such as how much sun exposure you have had over your life. The white crusty spots may be something called “stucco keratoses” or “seborrheic keratoses,” which are spots that normally come with aging and are not dangerous.

Dermatomyositis itself causes a lot of itch that people can mistake for eczema. It is possible for patients with dermatomyositis to also have eczema (eczema is very common), but another possibility is that the skin disease from the dermatomyositis is active. In this case, the rash could be treated more aggressively to help with the itch, which can be very severe and impact our patients with deramtomyositis a great deal.

It is very typical for the skin rash of dermatomyositis to not respond as well as the muscles. Often, the muscle disease gets better first and patients have skin disease for many months to years after. There is actually a medical term for this – it is called “postmyopathic dermatomyositis. The IVIG you had in the past tends to work well for the skin disease, including in patients with tough to treat skin disease – this may be something you could receive again in order to avoid increasing your dose of cellecpt for the skin rash–IVIG is a medication I use in my patients with difficult to treat skin disease, often with good results. Hydroxychloroquine (plaquenil) is another option that helps the skin in many patients with dermatomyosits.

This is typical for dermatomyositis. There is a medical name for this, called “ragged and hypertrophic cuticles.” It is best to leave them alone rather than have them cut. These typically improve as your skin disease comes under better control.

Some immunosuppressive medications do increase the risk of skin cancer, for example—imuran and some other medications. That said, non-melanoma skin cancers (basal and squamous cell skin cancers) are very common. You could consider having your dermatologist prescribe something called field therapy to try to prevent future skin cancers. If this continues to be a problem, you could consider adjusting your medication regimen for your polymyositis to therapies that are less likely to increase your risk for skin cancer (as an example, IVIG does not increase your risk of skin cancer).

As I mentioned above, it is very typical for the skin rash of dermatomyositis to not respond as well as the muscles. Often, the muscle disease gets better first and patients have skin disease for many months to years after. There is actually a medical term for this – it is called “postmyopathic dermatomyositis. There are many options to consider to better treat your skin disease specifically. Options include: better protection from the sun, hydroxychloroquine (plaquenil), cellcept, IVIG, amongst others. Methotrexate works very well in some patients for this skin disease, but not in others. There are many dermatologists around the country who specialize in this – many are members of the Rheumatologic Dermatology Society (RDS). If you need to find one of these doctors, you can go to their webpage and look under “For Patients” at the bottom and then click “Our Physicians.” They are listed by state. The website: http://www.rheumaderm-society.org/

This is common—the medical term is called “post-inflammatory hyperpigmentation.” This essentially means that there is a stain of the skin where there used to be inflammation. The more quickly we can get the inflammation under control, the less of these dark spots will occur. Often, it is considered better to be on a medication regularly to try to prevent flares of the dermatomyositis rash rather than taking high doses of prednisone intermittently.

As I mentioned above, it is very typical for the skin rash of dermatomyositis to not respond as well as the muscles. Often, the muscle disease gets better first and patients have skin disease for many months to years after. There is actually a medical term for this – it is called “postmyopathic dermatomyositis. In terms of topical therapies, protopic does tend to burn – one trick is that you can keep the tube in the refrigerator and then it tends to burn less. Other than protopic, topical steroids are the main topical medications used. Very often, patients with dermatomyositis need more than topical therapy to control the rash—this is very common. There are many options to consider to better treat your skin disease specifically. You have been on many of the systemic agents, but IVIG and/or hydroxychloroquine (plaquenil) would be others to consider that you have not been on to date. There are many dermatologists around the country who specialize in this – many are members of the Rheumatologic Dermatology Society (RDS). If you need to find one of these doctors, you can go to their webpage and look under “For Patients” at the bottom and then click “Our Physicians.” They are listed by state. The website: http://www.rheumaderm-society.org/

Scalp itch and rash are classic signs of dermatomyositis. For scalp involvement from dermatomyositis, we recommend strong topical steroid preparations that are able to penetrate the skin – an example is fluocinolone scalp oil (“derma-smoothe) – it is greasy so we have patients apply it at night and wash their hair in the morning. You can also use topical steroid solutions (like clobetasol scalp solution) when your scalp is doing better–these are easier to use because they are not as greasy, but they therefore do not work as well when your scalp disease is flaring. As I mentioned above, we even use other systemic medications to treat this as it is a part of the inflammatory rash of dermatomyositis.

The main herbal supplements to avoid are those that make people sensitive to the sun–these are called “photosensitizers.” This is important as the rash of dermatomyositis worsens with sun exposure. Examples include: echinacea and St John’s wort, amongst others.

This is a part of the disease–we refer to this as “cuticular hypertrophy and ragged cuticles.” There are often changes in teh blood vessels here too that look deep red or even brown. Some of my patients use Vaseline, vitamin E oil, or even eucalyptus oil which has camphor. It is best to put these under gloves or bandaids to help them sink in to the inflamed areas. Imortantly, these tend to get better as your dermatomyositis comes under better control with systemic medications.

Importantly, itching is a known classic sign of dermatomyositis skin disease — therefore, most often, patients need to have their dermatomyositis regimen changed or increased to improve this itch. Small things you can do to help are to keep the skin well-hydrated with daily Cerave cream, Vaseline, etc. You could also speak with your doctor about increasing the dose of the pregablin (Lyrica) that you are on–as this could help your itch more as well.

Typically, we use new treatments developed for other diseases and try them in dermatomyositis patients. We typically do this when patients have run out of options from the therapies that we typically use for this disease. In addition, there will likely be more clinical trials for dermatomyositis in the pipeline that ideally will better help our patients with dermatomyositis.

Skin questions are always much easier when you can see the rash! The hard lesions may have been due to more intense itching earlier on in the disease–this is tough to say without seeing them. In terms of skin healing, the most important thing is to keep the sores hydrated with Vaseline every day. We even use Vaseline after skin surgery (rather than things like over the counter antibiotic ointments that can cause allergy).

When using topical steroids (clobetasol, triamcinolone, etc), you need to take regular breaks to avoid thinning of the skin. We call this the topical steroid “holiday.” A general rule would be: 1 week on, 1 week off, for the face; 2 weeks on, 1 week off for the body or the scalp. If you take the appropriate breaks, you can continue to use topical steroids over years. The protopic has the advantage that it has no steroid in it, yet it can still help with inflammation. The protpic can be used without breaks. Often, we have patients use the protopic during their week-long breaks from topical steroids so their rash/itch does not flare during those breaks.Clobetasol is the strongest for the body–ointments work slighly better than creams, but are more greasy.For the scalp, you may want to try fluocinolone scalp oil (“derma-smoothe) when you have flares – it is greasy so we have patients apply it at night and wash their hair in the morning.

Yes, unfortunately, it is very typical for the skin rash of dermatomyositis to not respond as well as the muscles. Often, the muscle disease gets better first and patients have skin disease for many months to years after. There are many dermatologists around the country who specialize in this – many are members of the Rheumatologic Dermatology Society (RDS). If you need to find one of these doctors, you can go to their webpage and look under “For Patients” at the bottom and then click “Our Physicians.” They are listed by state. The website: http://www.rheumaderm-society.org/Several of these physicans are doing research in this area — for example, Dr. Fiorentino (Stanford), Dr. Femia (NYU), and I all do research in this disease.

1. When the rash has been present for 6 months, it is less likely that it will affect your muscles. Once you have had the rash for 2 years, we consider it extremely rare that your muscles will ever be affected. We are not aware of anything to do to prevent this. We monitor patients carefully for these 2 years for this reason.2. Hair loss is typical when the rash of dermatomyositis is active. Once your skin disease calms down, ideally your hair loss will subside.3. There are other options for treatment of skin disease in dermatomyositis that you can consider (other than prednisone, which is not an ideal long-term solution). Depending on where you live, there are many experts — I would suggest trying to see someone from this website: There are many dermatologists around the country who specialize in this – many are members of the Rheumatologic Dermatology Society (RDS). If you need to find one of these doctors, you can go to their webpage and look under “For Patients” at the bottom and then click “Our Physicians.” They are listed by state. The website: http://www.rheumaderm-society.org/

We do not know of a direct relationship between BM and psoriasis. Psoriasis is fairly common (affects 3-6% of the American population) so you likely have 2 different conditions. The ointments that you are using are safe to use even with your IBM — the one thing to remember is that the betamethasone should be used for 2 weeks on, 1 week off, then repeat as it is a topical steroid and should be used with breaks. The calcipotriene is safe to use every day.

As you mention, the skin disease can be tough to control. I am glad that you are doing well on the imuran and the IVIG.If you had muscle involvement in the past, you defeinitely could have longer lasting effects even once the muscle enzymes in the blood are normal. It is very important for patients with dermatomyositis to do physical therapy and other exercise/rehabilitation to build their muscle strength back.

I would consider straight vaseline (a very thick layer) under white cotton gloves every night (see below). If you have actualy fissures/splits in the fingertips, we actually use superglue (from the hardware store)–the superglue will prevent the crack from breaking open further, and the superglue will stay until the crack closes. Many patients find this very helpful.If the roughness is minimal, we typically use a thick layer of Vaseline (thick like frosting, ½ a centimeter for example) under white cotton gloves at night. If the scale is very thick, we often use urea cream (a 20% urea cream can be obtained over the counter at the pharmacy; your doctor can prescribe a 40% version)—this helps to actually reduce the thick scale. Urea cream must also be used in a thick layer under gloves. The reason for using the gloves is that the skin on the hands is thicker than anywhere on the body, and the “occlusion” with the gloves overnight helps the Vaseline or medicine sink in to the skin so it can do its job.

Unfortunately, this is the MOST challenging part of dermatomyositis to treat. If you are developing new areas, we often change your overall regimen for the dermatomyositis to ensure that it is under control. There is no treatment for this that is effective in everyone. The best data (which is from Mayo Clinic) notes that surgical excision (removal) and a medication called diltiazem are the most effective–unfortunately, surgery is not an option for some people, and diltiazem does not work in many patients. I would consider seeing an expert in dermatomyositis skin disase (see RDS website from other questions) or considering whether removal by a plastic surgeon is an option for you.

Please switch any lotions to creams as creams work much better. We like Cerave cream, for example. The best would be to apply Vaseline or Aquaphor to these areas every night–this is the most moisture we can give the skin and ideally should help you.

I typically favor IVIG over rituximab for skin disease. There is also better data for IVIG than rituximab for skin disease specifically.

Patients with JDM ahve sensitive skin in many cases and are sensitive to the sun. We like using products with low allergen load (that can cause allergy) and that have sunscreen. A good example is: Vanicream (that can be found on line and occasionally in stores). Gentle soaps such as Cetaphil gentle cleanser are recommended.

There are many factors that lead to this — there is no cure (this is like eczema that runs in the genes). The main thing to do is use a regular treatment — over tthe counter examples are head and shoulders or nizoral shampoo (which you can use on the scalp and the face). 1% hydrocortisone over the counter can also help the face.

Unfortunately, only time can help with the skin discoloration as well as excellent protection from the sun (as the sun can make the color change darker). Some doctors try laser on the color change, but there is variable success and this is not covered by insurance.Please see other response regarding calcinosis.

Excellent protection from the sun is the top priority (as the sun will darken this). Laser works in some patients, but not in others (and is not covered by insurance).

The masses just take time to go away (this can be a local inflammation in the fat). There is no effective treatment for stretch marks–these are from the prednisone rather than the methotrexate so ideally you can be on as low of a dose as possible.

We prefer physical blockers as they provide better protection. Also, make sure you have a sunscreen with both UVA and UVB protection. The only ingredients to avoid are those that irritate the skin or are too drying as this can flare the rash.