Elisa

[Guest guest]

,

I'm not but I thought I'd put my 2 cents worth in about prednisone. I was on it from June of 06 till October of 06 at doses of up to 100mg a day. Beginning in October of 06 my pulmo began weaning me off and I was off completely by February of 07.

I had many side effects, sleeplessness,restlessness, unstable blood sugar, oral yeast infections,GERD, etc etc etc. BUT the prednisone stablized my disease. I firmly believe that the IV steroid in the hospital saved my life and the oral prednisone allowed continued stablization of my illness. I was also fortunate in that I had a pulmonologist who aggressively managed my side effects and was entirely supportive of me.

I've been off now for over a year (except for the inhaled steroid in the Advair that I use twice a day) and remain stable. I will not hesitate to take prednisone again if or when I begin to deteriorate. I take the Advair, by the way, to control my cough. They feel it puts the steroid where it will do the most good, inhaled directly it does seem to control the worst of my cough.

Prednisone is a very controversial medication. Some here would never take it under any circumstances. I, obviously don't feel that way. Everyone has to decide for themselves. Some forms of fibrosis respond to prednisone, some don't. I'm fortunate to have a type that does.

One word about weight gain. Given your weight loss over the last several months I wouldn't worry overly about gaining some weight. It would probably benefit you to gain some. Just be aware of the overwhelming cravings that hit some folks on this med. It's easy when that hits to just inhale alot of "empty calories" and that's where the problem can come in. It sounds like you're already aware of the importance of eating well so you're way ahead of the game.

Take care!

Beth

Age 48 Fibrotic NSIP 06/06

Change everything. Love and Forgive

So glad I've found you all!

Dear lovely people,My name is and I just turned 52. I live in Mansfield, TX and I'm a 6th grade teacher in my last three weeks of school. My story is long and I'm hoping one of you can give me some help and guidance. I am great at giving the same, and hope that I can reciprocate in the future.I've been reading hundreds of past posts for two days seeking answers I wasn't given in this miserable month since diagnosis. In Jan.2007, I had a major coughing spell and had a breathing treatment the night of my dad's visitation at the funeral home. Not having a regular doctor at the time, I went to one of those "doc-in-the box" places where I liked the doctor. Then, last summer, I had a horrible cough and fever twice and was diagnosed by the same doctor both times with bronchitis and put on antibiotics. She never would do a chest X-ray. Flash forward to Dec. '07 when the cough came back in

spades. I had also started losing weight. I went to another clinic and had X-rays, but no pneumonia. Repeat of this in early January. I did get a couple of asthma sprays, cough meds w/codiene, and nose spray, but coughed day and night. By March, I finally made an appointment with a "good" doctor. He also went the allergy route on the treatment, even though I said I'd had fever many times. I had lost 20 lbs. since November '07. By mid-March, I came in demanding that I needed help. He X-rayed me and said I had pneumonia (same DRY cough) More antibiotics, one horrible drug reaction to Cipro, and probably more damage done. Two weeks more and I went back for a follow-up. I said to him that I thought I had Lupus (my internet research) because I was having numb fingers, (Reynaud's, I now know)weight loss, and coughing. No, he said. Then...he did an X-ray, heard the crackles, came back in stricken looking.

He said I might be looking at an autoimmune disease and interstitial lung disease or some infiltrates. WHAT????? Can't anybody see this on X-rays?? He got me in for a sinus scan and set an appt. with a pulmonologist. The pulmonologist ran a RA panel and I tested high in the whole panel, but I only seem to have symtom's of Sjogren's. I had 84% pulmonary functioning. I then had a CT done and an asthma test(of course, negative). This doctor was the worst! He read the CT scan for the first time in my presence (had it two days) and didn't happen to see "severe pulmonary fibrosis" or just didn't care enough. No treatment plan was given, no information except lung scarring from autoimmune disease. He stood the whole time like he was in a hurry. He told me to see a rheumatologist as soon as possible. The next week when I saw her, the nurse read those words to us and I was shocked. I have been on prednisone

for three weeks and feel like I have been thrown out in the water by the medical profession, totally in charge of figuring out what to do physically and mentally. The pulmonologist has since left the location, cancelled all appointments, and in his new location has appointments in June. My PCP has sent all info to UT Southwestern in Dallas to get me on with a great doctor. It could be weeks. Meanwhile, I've had pain and anxiousness, and the need for information. I have been back to PCP, but he does not want to order a scan knowing how much I've been radiated. He told me to watch for signs of a blood clot. I guess I would go to the emergency room with extreme pain. I don't know about exercise, breathing exercises, food to eat, how to sleep at night to maximize breathing, or how to quit obsessing about dying in the next ten years. This has been like a new full-time job. I have friends and some family,

but feel like I'm on a downward spiral.If you've read to the end here, bless your caring heart! I am an English teacher on steroids, so I wrote a lot! Thanks so much for any advice, prayers, direction you can throw my way.

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