I’ve had follow up appointments with most of the specialists in August. The heart doctor is still saying no heart catheterization yet since I just started treatments, he will repeat an echo in October to check on the pulmonary hypertension and see where we are.
Lung dr has no real changes, is leaving the prednisone dosages up to the rheumatologist. I’m hoping I can get off of it soon because I have some serious prednisone “moon face” and I’ve gained 10 pounds. Repeat CT scan of lungs and more function tests in October.
Rheumatology dr has agreed to take me off of the prednisone but I have to come down to 5mg for 3 weeks then off since I have been on it for four months. Still getting blood work every month because of the CellCept but not really having any issues other than the occasional unexplained bruise.
I probably should take some time to explain what Sjogrens is and how they came about determining that that was the particular autoimmune disease I have. Sjogrens syndrome is a chronic autoimmune disease where your immune system attacks your moisture-producing glands. Usually this is primarily in the eyes and mouth, causing dry, itchy eyes and dry mouth, cavities and mouth sores. Primarily found in women over the age of 40. In systemic Sjogrens it can affect any system, causing a myriad of symptoms so no two cases look the same. In my case, I had slight eye issues which became worse after diagnosis, probably because I paid more attention. My eyes actually are stuck together when I have to wake up at night to use the bathroom, many nights walking to the bathroom either completely blind or alternating which eye I can keep open for a millisecond. Dry mouth – kinda, I just didn’t know it – my mouth wasn’t dry but my saliva apparently isn’t normal saliva, it’s sticky (gross), which causes cavities ( and I’ve had a lot), heartburn and acid reflux (didn’t know it was part of it until later on but it is), difficulty swallowing, food got stuck in my throat, night sweats, Raynaud’s phenomenon (my toes would go white and hurt) and then of course the lung issues. Looking back on them now It’s like wow, how did the dr not know but it takes the right dr to put them all together and it takes the patient to speak up.
As far as diagnosing, that comes from not only the subjective part (asking the patient about their symptoms) but also the objective part (what do you see) lab/test results/examination-my labs in the hospitals from all that blood work showed the +ANA that I had requested (antinuclear antibody test). The higher the titer number, the more likely you have an autoimmune disease. Mine was 1:640 with a nucleolar pattern. Pretty much greek to me but I know they use this to help determine the type of disease you might have. What really pinpointed to Sjogrens disease was the labs for the antibodies for markers called SSB and SSA Ro 52, these are key for Sjogrens with 60-80% of people testing for at least one. I tested positive for both according to the rheumatologist, and I also had a low rheumatoid factor. ding, ding, ding, we have a winner folks!