Keeping My Head Up with An Autoimmune Muscle Disease

I am dealing with MCTD and one of the awful overlapping diseases I have is Necrotizing Myopathy, sometimes referred to as Necrotizing Autoimmune Myopathy (NAM) or Immune-mediated Necrotizing Myopathy (IMNM). The condition is characterized by signs of necrosis, or cell death, in the muscles, which causes weakness and fatigue. As with other types of myositis, there is no known cause or cure for necrotizing myopathy.

Necrotizing myopathy is a newly defined form of idiopathic inflammatory myopathy, or myositis. Patients with necrotizing myopathy have muscle biopsies that show much less inflammation in the muscle tissue than polymyositis patients, but they have increased evidence of  muscle cell death or necrosis.

Creatine Kinase (also known as CK, or Creatine Phosphokinase [CPK]) is an important diagnostic blood test for myopathies. CPK is a type of protein called an enzyme that is especially active in skeletal muscle, heart tissue, and the brain. When muscle tissue is damaged, the cells release their contents into the bloodstream, causing elevated CPK levels in the blood.

CPK levels in the blood can vary with a number of factors, including gender, race, age, activity, health status, testing method, and more. Higher levels of serum CPK can indicate muscle damage from chronic disease or acute muscle injury. In myositis, it is not uncommon for CPK levels to far exceed the upper limit of normal. 

I try to get my CPK checked every 3 months. Dr Maggie Yu suggests that patients be aware of what’s happening in their bodies by collecting data, through blood tests or other methods, while making sure the results do not define them as a person. This has been a long process for me. When first diagnosed in 2013, my CPK was 5800. Remember, for 5 years the nurse practitioner I was seeing did not understand my illness and didn’t thoroughly explore my bloodwork.

Even though I was taking medications while also trying to direct myself toward a more natural path of living, I was still not seeing normal counts in my lab work. I did get down in the 300’s right after Dr Maggie’s program. She insisted I stay on the drug Mycophenolate until I had 3 stable months in a row. While working with a local Integrative Physician last August, we decided to stop the immunosuppressive drug altogether. I am coming up on a year with no immunosuppressive drugs and have recently been putting off getting my CPK. Why? I am feeling pretty darn good! I am hitting the golf ball well and feeling strong. There are times I forget that I have such an awful disease until a bad day sneaks up on me and I remember that I am still ill. Was it that I just did not want to know? I used to get nervous but lately I try to listen to my body.

Now to my point. I did get my blood work done and my numbers are creeping up. I will not let this define me!


After going off of the immunosuppressants, I began to log my numbers so that I could monitor my body closely. Below I will share my yearlong results:

5/3/18- 308 (nearing the end of Dr Maggie’s program)

5/14/18- 372 (2 months into Dr Maggie’s program)

6/28/18- 426

8/6/18- 444 (stopped taking Mycophenolate after this)

8/29/18- 467

10/2/18- 488

11/7/18- 470 (IT WENT DOWN!)

12/27/18- 628

4/23/19- 703

7/24/19- 810

From 11/2016 – 6/2017 the range was 1,100-1,500 (on meds) It did start to drop shortly after I started CBD oil in August of 2017 (coincidence?).

June 2017- 1,410

September 2017- 763

October 2017- 629

November 2017- 801

January 2018- 580

I know this is a lot of numbers and you may get lost in all of this.

It is hard to find others who are treating this condition the way that I am and because of that, I often feel very alone. Most Integrative Physicians are not well-versed in this condition and therefore treat the autoimmune attack rather than the specific disease. I agree with this approach; however, I would really like some support from others who are dealing with this disease. Until I find that, I will continue to be a support for others and keep fighting and being my own advocate by educating myself and healing my body through natural ways!