Monthly Archives: June 2016

UPDATE FROM DOCTOR

As some of you have read previously I have started Cellcept, a new medication for MCTD and Lupus to help change the course of the disease instead of dealing with individual symptoms.  I have been on it now for 8 weeks and I feel pretty good. Other than my flare at day 300 my body feels strong.  I am dealing with some life stuff so I am feeling more tired than normal but my body feels good and my exercise routine is normal.  As I was talking with my doctor he kept referring to my Lupus and for 13 years I have always considered myself to have MCTD.  Over the years I have done extensive research on both MCTD and Lupus.  My symptoms fall more in the MCTD range but apparently my blood work indicates more of a Lupus profile.  My internal organs are not affected as of right now and I do not have any skin rashes, lesions, or discoloration.  I do have severe Raynauds and my fingers continue to be thick, puffy, and swollen every day.  My joints feel ok and I take extra care with my small joints in weight training and yoga.  I do have an indicator for Polymyositis.  This is the first reading that has ever come back high for me and it does cause me some concern. Polymyositis is a rare inflammatory disease that causes muscle weakness.  Although there is no cure for this disease there are treatments for managing it.  Usually in the form of medication or physical therapy.  My plan is to have a few more tests done stretched over 12 months so I have several readings at different times in my life and decide if this is something to be concerned with or was this a fluke or is there something else going on.  Either way I am not in denial but I want to make sure I understand what my body is telling me.  I enjoy physical therapy very much but decided to stop going nearly a year ago and perhaps that is a beneficial part of my management.  I also have not had time to meet with my trainer so I believe there are things I can do and try before any medication is introduced into my routine. I am not opposed to medications but only when I have exhausted all other options.

This news has caused concern for my husband and rightly so, but I have not felt that same concern. I do have feelings of the unknown but let’s be honest when anyone is dealing with any disease, illness or issue every day is unknown.  I am vigilant about my health and that won’t change it just means I need to do new research, figure out what Polymyositis means to me and do I really have it.