I’m a 50-year old female. In 2004, I was diagnosed with Sjogren’s Syndrome (primary) with rheumatoid arthritis (secondary). I went to various doctors and was prescribed an overwhelming amount of medication including steroids and quinine. Although I feel like I have the flu most of the time, tired and achy, I am used to this, in that I went undiagnosed for decades. The medication that they had me on was driving me mad (especially the steroids), so I stopped taking all of it. I have my good and bad days and have tailored work and home around to fit my needs.
Since Sjogren’s is so under-researched, I can’t get a straight answer as to whether I am causing my body harm by not seeking treatment. It seems to me that the Syndrome is mostly bothersome, i.e. dry eyes
and mouth, body aches, and feeling crappy all the time. I sure the arthritis plays a part in my low energy and I my fingers and knees are beginning to “gnarl up.” However, I seldom experience pain in excess of 4 on a scale of 10 and seldom have the need for pain medication.
I was recently told that the Syndrome could be causing unknown damage to my body. Is this true, and if so what type of doctor should I seek out for advice. We only have one endocrinologist in the surrounding 100 mile area and it is difficult to get in to see her. I am very leery of the “untried” new medicines on the market due to the lengthy list of side effects including leukemia.
So, I guess my question is: Although I am able to manage effectively, is the medication available to treat my conditions necessary and/or worth the risk of side effects?