CTD-ILD; Sjorgren’s Syndrome, Polymyostosis; Antisynthetase syndrome
Greetings — I am new to the forum and new to all things wrong with me. Just curious if anyone else out there in forum land has the same or similar diagnosis as me. I am on oxygen 24/7, and I use a POC and at-home concentrator. Although I hate hauling the oxygen around with me, I would not be alive without it. I am currently on 20 mg of prednisone and 30oo mg of CellCept (mycophenolate) – I just increased the CellCept a day ago, so I am trying to get used to the increase. I have gained 25 lbs since I started taking prednisone (the CellCept could also add to that weight gain). I am careful of what I eat, but the weight keeps going up — very frustrated. My last PFT wasn’t very good — I had one in Feb and another one in June. All of my numbers had gone down.
As one of my pulmonologists put it, the autoimmune disorders are attacking your lungs. We need to try and get that under control before considering a lung transplant.
I learn something new every week (sometimes every day). I need to wear a Holter Monitor for 7 days, which I did wear for 4 days until it quit working. I get to start over this week. As a point for more information, I am 62 years old, and I still work full-time. I am blessed to work for a university that allows me to work from home when I need to (which is 10-30 hours a week, depending on my energy level.)
I would love to hear from anyone who has the same or similar diagnosis as me.
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