Christine, I also have SICCA syndrome, Raynauds and Sjogrens, so one never knows what is causing what at times. As I heard a doctor today say, having an autoimmune disease is like a jig saw puzzle, have to find how all the parts fit. Many primary doctors don't do full Antibody blood testing to pick up the autoimmune aspects.

I was diagnosed with Crest Syndrome in 2009 by my rheumatologist. I was told then, that it effects heart, lungs, hands and face. My rheumatologist had an echo done every year. February 2016, he called and said I need to see a pulmonologist. In August 2016, I was diagnosed with PAH, and started on medication.

Tom did they do blood work for checking for autoimmune diseases? They first thought I had Lupus but when they did a full autoimmune panel they saw I did not have enough markers for Lupus but did for Mixed Connective Tissue Disease, an umbrella for a number of things at one time but not lupus. Yours might be more heart related, mine went into the interstitial lung disease first. I now also have moderate non-obstructive coronary artery disease and carotid artery disease.

You are very welcome Tom, keep asking questions. I did not get a straight answer until I had already seen two rheumatologists. The second rheumatologist helped me get on different medications for the Mixed Connective Tissue Disease but then the Interstitial lung disease showed up one year later, she sent me to a pulmonologist locally that found the ILD, I then started researching and found out about the ILD clinic at the Univ. of Chicago, I was then able to get with my current pulmonologist that specializes in ILD caused by Autoimmune Diseases, that was back in 2018. My cardiologist just found the mild PH this July, but no one seems to concerned about it. I go back for a PFT and see both my pulmonologist and rheumatologist early December, they work in the same clinic. 2nd opinion never hurts. Really hope you get your answers, it makes a difference!!

Tom, I have just been diagnosed with mild PH this July, but mine started with Mixed Connective Tissue Disease, SICCA syndrome, that caused my Interstitial Lung Disease and now mild PH, I also have non-obstructive CAD, and carotid artery disease, Mine was finally diagnosed in 2017 and verified at the ILD clinic in Chicago.