MCTD and Polymyositis

I spent yesterday crying.  And yes, I binged a bit in the evening - had a protein bar, a carbquick cookie I had made, and another protein cookie.  AJ hugged me most of the night and I went to bed early.  Just another day in my life.  I got some blood work results and piecing together the results, the RA doctor comments, knowledge of what she has me listed as for the last few years, and some on line reading, I suddenly 'got' what she was saying I had.  Few things.  I have RA, systemic lupus erythematosus (SLE), I was aware she often did blood work looking at Mixed Connective Tissue Disease - but the results never really came back positive.....until this time (and very clearly positive along with other markers).  With my continuous muscle fatigue, and CK being high for numerous blood works, she wants me to see that nerve doctor (talked with Dr Alex's sec, she said it would be about 4-5 months til I see him)  RA doc talks of the nerve doc doing a muscle biopsy.  So it's coming down to MCTD/polymyositis.

Some information on a few things:

Polymyositis and dermatomyositis (PM/DM) are chronic inflammatory diseases of muscle. Muscle weakness is the most common symptom of PM/DM. Diagnosis of PM/DM involves physical examination of muscle strength, blood tests for muscle enzymes, electrical tests of muscle and nerves, and is confirmed by muscle biopsy.


From a blog - Living with Limited Spoons - 

Mixed connective tissue disease is an autoimmune disease that was first characterized in 1972. It is also called Sharp’s syndrome and is commonly referred to in its acronym, MCTD. As the name suggests, the disease is a combination of several disorders that affect various connective tissues in the body. Lupus, scleroderma and polymyositis are the primary disorders whose symptoms affect individuals with MCTD. Like many autoimmune diseases, MTCD progresses over time. That is, some of the symptoms associated with the condition do not develop simultaneously but instead occur in sequence over a long period of time. Because of these traits, MTCD often prove difficult to diagnose, while treatment is limited to the management of symptoms and the extension of mixed connective tissue disease life expectancy.

As an autoimmune disease, MCTD is a degenerative disorder that is caused by the overactivity of the immune system. In this condition, like in any of its kind, the immune system mistakes healthy cells for foreign bodies that need to be destroyed. Thus, normal cells deteriorate and eventually die. The outlook of MCTD is generally worse than that of single connective tissue disorders, such as systemic lupus erythematosus. Even in the presence of prednisone treatment, the condition tends to continuously deteriorate the patient’s body. This is because MCTD is a progressive autoimmune disease that naturally develops into worse disorders or creates more complicated and fatal symptoms. One common condition met by patients with MCTD is progressive systemic sclerosis, which has a poor prognosis. 

Mixed connective tissue disease life expectancy is decidedly short, and death is inevitable in most cases. However, up to 30 percent of cases are mild, and there are individuals that experience remission. This is particularly true of patients with no anti-RNP antibody in their blood.

That last sentence is not me, I don't fall into that category.  So my life is... what I make it, and will last as long as it will.  

What had me crying for hours is one of the ways they try to control it - with steroids.   Specifically Prednisone.  Nothing new as I have used this drug once in a while when the pain/flares got too much for me to handle. Though, just one dose of 5 pills at once.  It would make me a bit hungrier, and more emotional, but nothing that I couldn't handle as I knew in a few days I'd be better and ok.  The dose they talk about is large, and long on the drug.  Anyone who knows this drug knows the biggest side effects are: increased appetite, moon face, WEIGHT GAIN, emotional/mood changes.

I can't.  I just can't gain again.  I've been working so hard to get the weight off, I just can't take medication that will cause weight gain - fast weight gain.  On top of that mood changes!!!  I will be a basket case..... a fat basket case then.  I cried to AJ that I would rather die before being fat. What is the point of me losing weight only to gain it because of meds? No. Not going to happen.  They can find other meds and I will try them.  Or not.

My goal at this point is to live my life as happiest, enjoyable as I can daily, to outlive my pets and husband, while still being able to be mobile and to live my life weighing around 160 lbs. (being active, fit, body firm and toned, able to eat easily foods I enjoy)!  So be it!!!  Amen.