Hello, group!

[Guest guest]

I have not been posting regularly for many months, but read mail daily. I know most everyone's story and am a regular on Facebook, where I talk with many here regularly. I was diagnosed with multi-connected tissue disorder and Sjogren's in April of 2008. I was also told I had pulmonary fibrosis. My story has the same kind of issues many of the newbies have experienced; bad doctors, incorrect diagnoses, high doses of prednisone, and raw fear!! Fortunately, I was able to work last year as a teacher, and had a great year, missing only three days with illness.

I have been going to UT Southwestern in Dallas since last July. Having fired the first pulmodude, I blindly called and got an appt. with a doctor who specialized in PF. This has worked out pretty good. He kind of scoffed at my use of a pulse oximeter, and told me they had a new procedure called a six-minute walk several months ago! He does spend huge amounts of time with me, will give me antibiotics over the phone at the first hint of an infection, and covers the CT scans slide by slide to explain what he sees. In Nov. '08, he told me I had improved with the prednisone and Imuran and said I had LIP, which carries a little better outlook. The problem is that lately, over the past four months, I have been coughing....a lot. Seeing my rheumatologist in the spring, she said to keep tapering on the prednisone even though I was coughing. I'm beginning to think she is worthless. I got down to 2 mgs and

called the pulmo. He upped me to 5mgs. I initially started out on 150 mgs of Imuran last year, but got a stomach problem, so was dropped to 100 mgs. I have remained there I made an appointment two weeks ago with pulmo to have something done NOW! The PFTs were a joke because I couldn't quit coughing. He put me on Nexium and told me to use a sinus rinse, thoroughly questioned me about when I coughed and what triggered a spell. I rarely have been SOB and sats are always in 90s, even during 6-minute walk. He once again upped my dosages of Imuran to 150mgs and Prednisone to 10mgs. He did a HRCT two weeks ago. When I was going through airport security in Florida last Friday, his nurse called to tell me I had progressed in the disease. She said that it was now considered Pulmonary fibrosis (?), to keep taking my meds, and they would see me in three months at my regular appt!!!! I told her that wasn't going to cut it

and I needed specifics on everything! She said to call back Monday. In the meantime, my precious litle pet died in my bed early Saturday morning. The weekend was hell. So, I called to find out what the specifics were on Monday. I had my list of questions ready. At 3:30, a nurse with another doctor called to tell me some info, but she didn't know squat! She said my doctor and his nurse was unavailable. I told her I was very upset with this and needed to hear from the doctor. Yesterday, at 5:00, she called again! She said that I would be getting the report in the mail (my request), and that I could call with "specific questions" on Friday to ask the doctor!! This is just not right! So, I know that I have "definitely" progressed, but WHY and HOW, and WHERE are unknowns. I'm thinking the rheumy dropped the ball by not keeping up the prednisone, but then I was begging her to get off it at the same time. Should she

have put me back on the target dose of Imuran again way before now? UTSW is a teaching hospital with specialists in PF, but this seems so totally unprofessional how this recent episode has been handled. I also go to the rheumy tomorrow, feeling that it's probably just a waste of time except for the bloodwork.

Does anyone have any sage advice or wisdom to offer? I am emotionally drained and trying to just take care of myself. I had a great time in Florida with my friends last week and loved meeting Peggy!! The humidity did get to me and I had some SOB episodes. Sweet Peggy brought me some O2 that I used while there. I'll put the picture of us in another post.

Elisa Cole

age 53 dx Sjogren"s, Raynaud's, (NSIP, LIP, PF) Apr. '08

Mansfield, Texas