seapuffers

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http://www.seapuffers.com/ P PM (Polymositis) 12/98, UIP 8/00, o2 24/7 9 LPM 8/04, PH 3/06, ILL yo 60

From: Sue Dassel <sdassel (AT) verizon (DOT) net>Subject: Re: Oxygen needs and other stuffTo: Breathe-Support@ yahoogroups. comDate: Wednesday, October 8, 2008, 4:37 PM

Cellcept and prednisone: As I understand it, both of these drugs are anti-inflammatory, but they work in different ways. Cellcept is supposed to have less side effects. I have been on it since last Dec. (with blood tests to check liver and blood count every month or 6 weeks)-- blood work had remained good and since December there has been a slight improvement in lung function each time I’ve had them checked. Doc says he would like to get me off prednisone. Without the benefit of insurance, I could not afford Cellcept – 120 pills per month (4 pills a day) is about $1,000 here in Virginia.

Bruce, I am going to save your message about how you feel about oxygen so I can look at it when I’m feeling down. Since I was only diagnosed with this disease a year ago last month and have only been on oxygen since then, I can still remember what it was like to not have the nose hose. I could just get in the car and go—now getting ready to go somewhere is like a family with a baby—you have to think about what you need, how long will you be out, what is your activity level, etc. Some of my close friends are now planning next year’s trip to the Greek Islands and we would normally have gone with them (if I still have any of my retirement money left). That’s when it really hit me. At least I did one cruise and saw Alaska before this hit, and having done a cruise it would be

just too much trouble and stressful for me with the oxygen.

Thanks for listening.

Sue D.

62 yr old, Fibrotic NSIP dx 9/07, VA