Rosemary G. - Diagnosed at age 32
This upcoming November - the day before Thanksgiving, I will be diagnosed with Lupus 39 years (1984). It started with chronic bronchitis/sinusitis, then double pneumonia and then interstitial lung disease with lupus. My first introduction to lupus was a college schoolmate who had lupus nephritis and died within 5 years. I was told by friends lupus patients didn't live long. Thankfully my doctor told me to ignore that false information. I was placed on mega doses of prednisone which started working initially, but several months later losing effectiveness. Tests revealed I had polymyositis - a CPK blood test of 5,200+) - again the day before Thanksgiving, 1985.
3 years later - with no significant changes, my rheumatologist knew of a double blind study at NIH/NIAMS and I was approved for it. I was at NIH/NIAMS doing the white apheresis double blind study the summer of '88. My CPK was lower but not to a satisfactory level. I also had fibromyalgia, tinnitus, and irritable bowel. Other disorders would come (mostly I think a result of side effects).
In 2008 I was diagnosed with pulmonary fibrosis and placed on oxygen. In December of 2012 I was at my rheumatologist office and feeling horrible. Listening to my heart - he had a puzzled look on his face, checked several times and said "you either have CHF (congestive heart failure) or pulmonary hypertension". Call your specialist immediately. I did and 2 weeks after stress tests, echocardiograms, and a RHC (right heart cath), I was diagnosed with pulmonary hypertension. It was stage 3. My pulmonologist believes it was caused by the fibrosis and/or lupus.
In 2017 I was diagnosed with endometrial cancer. I had robotic surgery in January 2018. Thankfully it was state 1 and I didn't have to do chemo or radiation. Last year I started noticing more breathing problems and a RHC revealed Stage 3 again. I'm now taking 2 specialty meds (and dealing with more side effects). It has been a long, hard journey but out of all the adversity has become active community service, and a ministry for people with disabilities. There are days of having that sick and tired syndrome, but my faith keeps me. I encourage all of us going through this journey to hold on to your faith. Thanks for listening.