How to Treat & Recover from Dermatomyositis

Dermatomyositis treatment options

As with many autoimmune diseases or conditions, no official dermatomyositis treatment can be called a cure. However – that doesn’t mean that you can’t turn it off. It doesn’t mean that you can’t almost completely, fully, recover. Even though there isn’t an official cure – chances are good that you will heal. You might find yourself talking with a very dour / sad / pessimistic doctor about your condition(s) – but don’t let that crush you. Sure, accept what they’re saying medically as far as treatments and next steps. But hold onto the idea that no matter what – you will heal, and overcome this and go on with your life. 

There is no better time to be seriously ill than today. That’s a weird thing to say – but it’s completely true. With all of the current medical interventions, along with our growing understanding of natural supplements, AND our growing understanding of diet and food as medicine – now is the best time to be sick because you have more options and ways to get well than ever before. 

Dermatomyositis Treatment RX Options

  • Immunosuppressants
    • When you first get diagnosed with dermatomyositis your rheumatologist will probably put you on a steroid such prednisone, and then also an immunosuppressant(s). The steroids are there to turn down the inflammation in your body, and suppress your immune system. And then they’ll give you more specific immunosuppressants on top of the steroids. The idea is to turn off your immune system enough that it stops attacking your body. Of course this also means that it can’t attack any invading germs/bacteria/viruses.
    • So you’ll be very susceptible to getting sick or infections from other people. Wear a mask. Carry hand sanitizer and avoid people with their germs. I’m not kidding. I didn’t take this seriously enough at first and had to be told how SERIOUS it could be and that I had nearly NO IMMUNE SYSTEM. I was started on a small set of immunosuppressants but then things went downhill REALLY FAST for me (went into the hospital) – so they ended up throwing and trying more and more drugs at me until we found a cocktail that worked.

There are a couple of immunosuppressants that they’ll throw at you – some might work, some might not, some might make you feel sicker. 

  • IVIG Infusions
    • Intravenous Immunoglobulin infusions are when they pump immunoglobulin from donor plasma, into your body. Basically – the immunoglobulin that your body is producing isn’t working correctly/has been damaged by the above immunosuppressants. So they insert new, normal healthy fighting immunoglobulin into your body. This will help fight any bacteria/germs you come into contact with, but also help reduce inflammation and the effects of dermatomyositis on your body.
    • Dermatomyositis treatment IVIG Infusions generally take about 6 hours a day, twice a month, depending your body weight and rate of intake. Some people have reactions and get sick/nauseous from the infusion – this may be from the IVIG itself, the rate of infusion, or even the brand of IVIG. Sometimes switching brands can help with fewer side effects. These are not cheap – hospitals generally charge $10,000 and up for each single day of infusions. I get an IVIG infusion every month and they seem to work great for me. I don’t have any ill side effects. Tip – make sure you are very hydrated, and got lots of rest the days before your infusions.
  • Rituxan (Rituximab) Infusions
    • Rituxan is sometimes referred to as a chemotherapy – but that’s incorrect. It’s not chemo. The reason many people think it’s chemo is because it’s often included in a chemotherapy regimen for cancer treatments. So they just lump it in with the radioactive stuff. Nurses will probably administer it with the same procedures as they would with actual chemotherapy drugs (specialized coverings/smocks for radiation.)
    • Rituxan targets a specific part of a specific cell that works in your immune system. It’s goal is to turn it off that part of your immune system so that it stops attacking your body. Generally you’ll start with two infusion sessions, about two weeks apart, every six months. It takes about two months after the infusions for the rituxan to peak and really start working in your body. I get these twice a year and I count them as an important part of my dermatomyositis treatment regimen.

Dermatomyositis treatment options

Dermatomyositis Treatment More Natural Options

These are some of the supplements I used with my prescriptions. I would not advise anyone to go against their doctors advice. Fortunately I had a great team of doctors that gave me the medicines I need to save my life, get my body stable and to a state where I could get ‘healthy enough’ to start healing. I also believe that these supplements aided greatly in the speed of my recovery.

  • Vitamin C
    • You have the tricky task of turning off your immune system enough that the dermatomyositis stops attacking you, while also supporting your immune system a little bit to maybe be able to fend off colds/germs/bacteria you might pick up. I started high dosing Vitamin C at 1,000mg a day when I got out of the hospital and I absolutely think it has helped to support my body in it’s healing process. 
  • Glutamine
    • Since muscle loss is a major issue with dermatomyositis – regrowing muscle was one of my main focuses during my recovery. If you’re trying to grow muscle then you need Glutamine, Glutamine, and more Glutamine. Sure protein is a component but for me – I felt like getting enough protein was easy however to help aid muscle growth even more – glutamine. I’m glossing over how it works and how important it is – but I think you should definitely include it in your regimen of supplements.
  • Glutathione

    • Sometimes labeled as the ‘King of antioxidants’ – glutathione is an important component to maintaining health and healing from autoimmune diseases. While I wouldn’t say it’s the ’cause’ of any illnesses – if you have an autoimmune disease then your glutathione levels are probably low. In the same way that essential vitamins help your overall health systems and not just fix one thingglutathione helps your overall immune system to repair your body and fight off harmful free radicals.
  • Tumeric & Fish Oil/Omega 3
    • Dermatomyositis causes inflammation in your muscle tissue which eventually causes it to disintegrate/waste away. Tumeric and Fish Oil are well known anti-inflammatories. Although they are more subtle and take longer than cortosteroids (prednisone) – they definitely don’t have the harmful side effects that those medications have. 

These are just a few of the more natural treatment supplements that I took alongside the medicines prescribed to me by my rheumatologist and pulmonary doctor. I never stopped taking my western dermatomyositis treatment medicines without my doctor’s advice – but I also continued taking my natural and holistic remedies as well. Remember – none of the prescriptions that western doctors prescribe are going to cure you from your chronic illness.

I can say that without hesitation because that’s what western doctors will say – there is no cure for your illness. Of course we know that’s often not true. Just because they don’t know of a cure for you – doesn’t mean that you can’t be cured or that you can’t find a cure. Or even better – it doesn’t mean that your body won’t heal. What it takes for you to heal will probably be different from what it takes the next person to heal. But it’s not impossible, it’s not hopeless. Keep adjusting your dermatomyositis treatment plan until you find one that works. Don’t give up. Keep going. Keep. Going. 

Facts About Dermatomyositis

Dermatomyositis muscle loss in the hospital

So you’ve recent been diagnosed with dermatomyositis! Congratulations! (sort of) You are one of the very few lucky individuals to have this quite rare condition. It’s pretty likely that you never came close to ever hearing of dermatomyositis until your doctor gave you the diagnosis. Right? Probably. Most people haven’t heard of it – and most doctors don’t know much about it. I’d be willing to bet that unless you’re at one of a few hospitals in the country, you may be the first and only patient that your doctor has seen with this condition.  Coooooooool. Okay not so much.

Right away – I’d like to say that as scary as things might seem now – chances are good that you will be okay. Seriously. I know it’s freaky to have this condition and to read the few medical resources on the internet – but you’ll probably be okay. Maybe not right away… but eventually… hopefully. Dermatomyositis can be put into remission. With a combination of medications, physical therapy/rehab, and diet changes – you can get close to back where you were, or possibly even stronger. Because you will work harder than ever before to be healthy. After you recover, you won’t ever take your health for granted and you’ll do whatever it takes to be alive and well. 

Dermatomyositis presents itself slightly different for each individual. Some of the symptoms show up more in some people, while others less so. For me – I had all of the extreme muscle loss along with some extreme skin outbreaks – and ON MY FACE. There was no hiding my illness and it was just out there front and center for the world to see.

Dermatomyositis Skin Rash on Face

In the first six months I went from 210lbs to 160lbs and then three months after that I went from 160lbs down to 125lbs. I lost tissue from all of my major muscle groups – but the scary part was losing tissue from all of my ligaments and tendons. Everything in my hip area disappeared. My throat muscles and tongue too – I was at 50% swallowing ability and my windpipe didn’t fully close. I was very close to having a feeding tube installed into my stomach so I could eat and not get food stuck in my lungs.

Dermatomyositis extreme weightloss

I couldn’t walk anymore. I couldn’t lift my head cause my neck was so weak. And worst of all – my lungs had been damaged so breathing was a real issue. My blood-oxygen saturation (the amount of oxygen in your blood) hovered around 90% (normal people are 100%) and would drop down to the high 70’s if I stood up for a minute (when I could stand). As far as being in bad shape – I was right at that point where you start wondering if you’re going to actually live and survive all of this. I spent a month in the hospital while my team of doctors rushed to figure out how to treat me. So I feel like I have a little bit of an idea on what you can experience with this condition and what it can do to your body.

Dermatomyositis symptoms and effects

  • Extreme muscle loss
    • And I mean EXTREME. As in your body tissue becomes so inflamed that your muscles waste away to nearly nothing. All of your major movement muscles but also your stabilizer muscles. Which means that even if you are strong enough to move – you become a major fall risk – and you won’t be able to get back up. Because it’s not that you’ll always slip and fall, it’s that you won’t be able to ‘catch’ yourself from falling. And once you’re down there, even in you haven’t hurt yourself, you won’t have the strength to get up. I once fell just as I answered the door for a food delivery. I was home alone and the delivery person just kind of stared at me. 
  • Skin rashes/bumps/scabs/sun sensitivity
    • The ‘derma’ part of dermamyositis means skin – so this’ll present itself in some visible way through your skin. In my case, it was a bad butterfly rash all over my face, but also a sort of brown scaly layer of skin EVERYWHERE that eventually peeled away. Eventually. I still have lots of extreme dry skin and flaking but it’s managed by my meds, along with the changes I made to my diet. They say you’ll be photo-sensitive, which means that UV rays and sunlight can be very bad for you – but what I discovered after too much time and some dumb luck, was that I became allergic to SUNSCREEN. More allergic to sunscreen than the sun. I would get big, deep, gnarly scabs on my face that also ended up taking actual CHUNKS of skin away, leaving me with some pretty deep and noticeable scars. Be extra aware of any topicals you’re putting on your skin and how you’re reacting (or not). 
  • Organ damage
    • One of the scarier effects of dermatomyositis is that the inflammation can spread to your organs and damage them. That was the case with me and my lungs. I have permanent lung disease/damage now – but when things really went downhill, they had to do a lot to keep me going. Lots of time was spent in the ICU while they ran ALL THE TEST to see if anything else in my body was broken.
  • Cancer
    • They don’t know what causes dermatomyositis but one of the hypothesis is that it’s your body responding to an underlying/unfound/undiagnosed cancer that’s lurking somewhere in your body. Your immune system has picked up on it – even if all of our medical instruments can’t find it. That’s not always the case – but what is true is that there is a high incidence of people getting some form of cancer within the first 2-3 years of being diagnosed with this condition. I have two specific antibodies (MDA5 and TIF-G) that also greatly indicate that I’ll have/get/find cancer in my first two years after the initial diagnosis. So you’ll want to get regular full body cancer screenings for at least the first 2 years. While I was in the hospital they ran a full body PET scan (with the radioactive dye and such) – and then also a testicular ultrasound. Yeah – they looked hard for any cancer that may have been there.
  • Dysphagia 
    • Difficulty swallowing food. This can happen for a couple reasons – the two main reasons being that your throat muscles are so weak that they can’t move food down. But also that your windpipe won’t fully close and you risk aspirating and getting food/liquid down into your lungs – which would be VERY BAD. I had both problems. Not only was I more and more unable to get food down, and it would get stuck, but my windpipe wouldn’t fully close and I was constantly at risk of aspirating. I was lucky and didn’t get much food going down the wrong pipe – but what did end up happening is that my saliva/liquids would get into my lungs every night while I slept and then I would cough it all up for the first 3-4 hours upon waking. Coupled with weakened lungs, this was… a horrible experience everyday for two months. It got to the point that a doctor had a serious talk with me about possibly getting a feeding tube installed into my stomach. (I was like… f*ck that. I’ll get better.)
  • Hair loss
    • For whatever reason, my hair on top of my head started thinning out a lot but my eyebrows kept growing longer and longer and thicker. Weird stuff. 
  • Achy Joints/Pain
    • I was fortunate and didn’t have toooo many arthritis like symptoms. Any joint pain I felt was primarily in my hands. But many people do feel major joint pain akin to having rheumatoid arthritis. Particularly in their shoulders, hips, and knees.
  • Sore/Painful Muscles/Unable to move limbs
    • All that muscle loss = muscle weakness. Many people can’t lift their arms above their head, and eventually can’t even walk (I couldn’t.) You lose so much muscle in your trunk/core area that you can’t sit up or even hold yourself up while sitting. You kind of just slide down and melt into a puddle. Your grip strength goes away and you can’t open jars. Or your hands shake with tremors by just holding the weight of a mug of coffee because you don’t have the muscle strength to keep it steady.  
  • Calcium Deposits 
    • Little calcium deposits like large grains of sand will form under your skin/in your muscle tissue. You’ll be able to feel them and… short of surgery to remove them – there’s nothing that will make them go away. 
  • Raynaud’s Phenomenon
    • Your fingers/hands will become really sensitive and tender to temperature and pressure. They may change color in hot or cold – and may even be painful under warm/cold water. Just really sensitive to the point of where it hurts whenever they’re touched. Even putting your hands in your pockets can hurt. Sores may develop at your fingertips and burn-like looking marks and rashes may also appear all over your hands. Swelling and joint pain can occur as well. 
  • Chronic Fatigue
    • You will be tired. Exhausted. I know you might have felt tired in the past – but tired is nothing like chronic fatigue. It doesn’t compare and it’s hard to describe. You just feel this deep down in your bones exhausted. Sometimes you’ll even wake up exhausted. Or you’ll wake up fine, and once you get up – it hits you and you’re still tired. Sometimes showers or preparing food or getting dressed will knock you out for hours. And it’s not as simple as hydrating and eating more food. 

Dermatomyositis presents itself in each person a little differently. You may have some or all of the symptoms/effects described above. It may be difficult to be diagnosed with just those symptoms and they may not even appear all at the same time (until your condition has really progressed to the point of being dangerous.) One additional aid in getting a quicker/clearer diagnosis is an antibody test. Specifically Anti-Nuclear Antibody tests (ANA Test). The ANA test is one of the first test run to see if you might have an autoimmune disease such as Lupus, Sjrogens, or yeah Dermatomyositis. There are two levels, first the basic ANA test which says YUP or NOPE that you have these antibodies. And then there are the more specific, antibody test that identify which ones you have – which direct your doctor to do more test to confirm a specific diagnosis. 

That was a lot of information. 

I want to tell you though – you will be okay. You will be okay. You will be okay.


Dermatomyositis?! And My New Life

It’s been a very interesting year so far and I feel like I’ve been waiting to get to the other side of it for such a long time. The short version is that last December I woke up with a swollen red eye. I thought my son had elbowed me in his sleep and it was going to end up being a black eye. But the redness and the swelling KEPT GROWING. Eventually it took over my face and then my body started changing over the next few months. After many different halfway diagnoses – I ended up being hospitalized for several stretches between July and October. It got impressively bad – and scary for those around me worrying about my health. My team of doctors eventually figured out the severity of my condition and found the right treatment to stem the overwhelming autoimmune attack on my body. 


Dermatomyositis (dur-muh-toe-my-uh-SY-tis) is an uncommon inflammatory disease marked by muscle weakness and a distinctive skin rash.

The condition can affect adults and children. In adults, dermatomyositis usually occurs from the late 40s to early 60s. In children, it most often appears between 5 and 15 years of age. Dermatomyositis affects more females than males.

There’s no cure for dermatomyositis, but periods of symptom improvement (remission) can occur. Treatment can clear the skin rash and help you regain muscle strength and function. – Mayo Clinic

At that point I had lost 85lbs – down from 210 to 125 and sickly. My muscles, tendons, and ligaments had literally wasted away – most of it lost in the last three months. But even worse than that – my lungs had also been damaged – I couldn’t breathe and my body wasn’t receiving enough oxygen into my blood stream. My lungs couldn’t process and get oxygen to the rest of my body so it was a double whammy of having no muscle to move, and no oxygen supply in my limbs. I couldn’t walk and couldn’t breathe. I’ll admit – that was pretty lame. I didn’t worry about dying – but there were a few moments where I wondered about it…

Interstitial Lung Disease

Interstitial (in-tur-STISH-ul) lung disease describes a large group of disorders, most of which cause progressive scarring of lung tissue. The scarring associated with interstitial lung disease eventually affects your ability to breathe and get enough oxygen into your bloodstream.

Some types of autoimmune diseases, such as rheumatoid arthritis, also can cause interstitial lung disease. In some cases, however, the causes remain unknown.

Once lung scarring occurs, it’s generally irreversible. Medications may slow the damage of interstitial lung disease, but many people never regain full use of their lungs. Lung transplant is an option for some people who have interstitial lung disease. – Mayo Clinic

After more specific and detailed blood tests – they “threw everything and the kitchen sink” at me with new drugs and found a cocktail of pills and IV infusions that thankfully started working.  Lots of immune suppressing pills (often used by transplant patients to help avoid organ rejection) and of course a ridiculously high level of prednisone/steroids. But it’s working for now and I’m healing-ish. Or rather – I’m becoming more and more functional. I’ve essentially had to relearn how to walk and figure out some tricks with my lungs and taking breaths. But mostly – right now – I’m just trying to get back to where I can do a few normal things like playing with my 7 year old son. Of course when I venture out into the world – I wear a face mask and I’m hyper paranoid about germs – cause an infection or illness would be VERY BAD for me and probably land me back in the hospital. 

Home after a long hospital stay

Everything has changed. 

I can’t work – definitely not as a wedding photographer (which I did for the last 10 years) and really nothing that involves me walking or moving more than 10 feet at a time without heavy breathing breaks. At times my weakness and inability to do things IS comical. At least to me. Like not being able to get up off the floor, or feeling my legs go numb after a few minutes of standing and realizing that they’re not receiving oxygen. My body is completely different now and it’s all so interesting to me. Like discovering you have weird super powers that work in reverse – and instead of doing MORE things – you can’t do ANYTHING. Ha.

There are good days and bad days – and everyday is different now. Honestly? Different in the best kind of ways. We’ll get into all of that soon.

During this time our friends setup a GoFundMe for us – and we are so grateful for everyone that’s supported us. Thank you Thank you Thank you. (I’ll do a whole post on this too, soon.)