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
- 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 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.
- 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.
- 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 thing – glutathione 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.