Helping raise awareness of Myositis

There are many types of treatment options for Polymyositis, Dermatomyositis and IBM patients. Below are a few common treatments doctors are using to help put the disease into remission and help gain back muscle strength. The most common are Corticosteriods and immunosuppressants. 

Below are some of the treatments I have experience with.  I have written down some tips which are based on my experiences alone.

  • Prednisone- is used to treat many diseases and Prednisone is the first line of treatment used for Myositis patients because of its rapid action. Prednisone is a corticosteroid and suppresses the immune system. It is a miracle drug but it also comes with many side effects.                                                                                      
               Tip- Take it early in the morning to reduce the side effects of the morning. If it bothers your stomach, take it with food. Also, take calcium and vitamin D supplements when on this medication because it thins out your bones.                                                                                                                                                       
When Prednisone isn’t enough to control the disease or the patient may need to be on long term treatment, they introduce steroid sparing drugs such as:
  • Imruan (Azathioprine-genric name)- This medication suppresses the immune system.  It’s primarily used for kidney transplant patients but effective for other autoimmune disorders.     
              Tip- Get your blood checked every couple weeks for the first couple of months (doctor will order it when you start this medication) because it can effect you liver.  This medication has been around for a longer time then Cellcept and it's a little safer according to what the doctors told me. The doseage goes by weight.  It works very slowly.  It can take 3 to 6 months to see the effects of the medication.
  • Methotrexate Rheumatolgists use this medication to treat various forms of arthritis and other rheumatic conditions such as Polymyositis and Dermatomyositis. It is known as a disease-modifying antirheumatic drug (DMARD) because it not only decreases the pain and swelling of arthritis but also can reduce damage to joints and the risks of long-term disability. It comes in tablet and injection form. Some cannot tolerate this medication.
            Tip-Doctors recommend taking folic acid when on this medication to reduce the side effects.  This is a powerful drug well and have to be very careful with other drug interactions.
  • Cellcept (mycophenolate mofetil)- Just like Imuran, this medication is primarily used for transplant patients by suppressing the immune system so the body won’t reject the organ transplants. This medication can give you stomach issues but it tends to get better after a week or so when the body gets used to it. It comes in liquid or tablet form (tablets are bigger than normal size). Max dose is 3,000 mg per day.
          Tip- Take this medication on an empty stomach, the body absorbs it better. The doctors tend to slowly increase the dose so it reduces some of the stomach issues when first starting this medication. I used to take the name brand (now they have a generic version) which worked very well for Dermatomyositis. Wait about 30 minutes after you take the medication to eat food.
  • Rituxan (Rituximab)This medication is getting used more and more for Dermatomyositis patients. It seems to work great for some and does nothing for others.  Rituxan is given as an injection through a needle placed into a vein. It targets the CD-20 positive B Cells by eliminating them. Rituximab destroys both normal and malignant B cells that have CD20 on their surfaces, and is therefore used to treat diseases which are characterized by having too many B cells, overactive B cells or dysfunctional B cells.It’s usually good for 6 then repeated depending on how it works for your condition. The medicine must be given slowly through an IV infusion. 
          Tip- Rituxan is a very targeted type of medication unlike the other immunosuppressant’s but it comes with serious adverse reactions (generally safe though) so have to make sure this is something you can benefit from. If other traditional medications have failed, this might be your magic bullet. You have to get a CD-20 blood test to make sure they are okay before getting this treatment.
  • IVIG (Intravenous immune globulin)IVIG (Intravenous immune globulin) - is given through IV. It works well for autoimmune diseases and does not have many side effects like other medications listed above. It also doesn’t suppress your immune system. IVIG dosage goes on weight and is generally given every other day for two weeks or so. Depends on if you get a flare up and the doctor might order once a month to keep it under control. Immune globulin is made from human plasma (part of the blood) and may contain viruses and other infectious agents that can cause disease. IVIG is screen, tested, and treated to reduce the risk of it containing anything that could cause disease, there is still a small possibility it could transmit disease.
           Tip- Before starting the treatment, you generally get Tylenol (for headaches) and Benadryl to control any allergic reactions to it. It works quickly. You can generally expect to see a result within couple of weeks or less. Many have reported less fatigue, more strength and have lowered their CK levels. 
There are other treatments and medications but I’m not that familiar with them.

-Myositis Now Team