Guest guest Posted June 16, 2009 Report Share Posted June 16, 2009 Hi. Have to smile and comment on my go round with Dr. R re: taking Prednisone. On my own I went from 10 ml to 5 mll, and my IPF showed it! I cried and said I hate Pred. He said, well, okay - you want to live or die? He was quite strict with me - so I went back up to 10ml and was doing better. Seems I have digressed in my health lately. He took me off oxygen, now I need it more than before. It is my suggetion that you take the Prednisone - at least give it a chance. Joy > > > From: > Sher Bauman bofus (AT) wbcable (DOT) net> > Subject: > Sher' thinking too much? > To: > Breathe-Support@ yahoogroups. com > Date: Tuesday, June 16, > 2009, 9:50 AM > > > > > > I've > read on a couple posts lately, re: Dr. Raghu in Seattle, that he > apparently wants to do bios and/or use prednisone.. > . > > I do > not want to do either, so I'm wondering if knowing this ahead of time > would defeat my purpose in going to see him?? > > What > say you? > > > MamaSher; 70, IPF 3-06, OR. > > Nasturtiums > Don't fret about tomorrow, God is already > there! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 17, 2009 Report Share Posted June 17, 2009 Sher Could on cocaine too but I wouldn't recommend it. Ok, now that out of the way, let's see. To me there are two separate questions. The first is the boost of energy or the euphoria impact of the prednisone. Most doctors would not recommend long term use to achieve that. However, if that simply comes with its use for other purposes then good. The reason a doctor might recommend long term usage for you would tie more to your disease. If, in fact, you have NSIP as has been suspected, prednisone is known to benefit. However, if you're fairly stable without it, then it becomes a matter of conflict as to whether to use it preventatively or to wait until there is some sign of flareup or worsening. If you have UIP then it would be used more in conjunction with any associated inflammation that might be in addition to the basic fibrosis. It provides relief from the inflammation and some doctors believe it may slow the inflammation from turning into honeycombing. Ultimately, only you can decide what course to take. If you do choose prednisone, then I'd at the same time take precautionary steps in dealing with the long term effects. You can take meds to help against osteoporosis and can diet to help protect against diabetes or to help manage it if it does develop. The real problem is we don't have clinical trials to look at. Had I been on prednisone the last two years and was doing the same as I am, I'm sure they would look and say the prednisone had prevented progression. Same with you for the last several years. However, we do know those like Pink Joyce who has more to make her feel it has helped and those like Beth who has NSIP and Dermatomyositis and absolutely knows it helped her after diagnosis. She isn't on it now. I do find " low dosage " as an interesting alternative because it's not one chosen often as a starting place. Most start high and then reduce or don't use it at all. When the University of Chicago suspected I might have an underlying connective tissue disease their recommendation was low to medium dosage. My rheumatologist always starts at a higher dosage. To me the lower dosage makes sense if you're not experiencing rapid decline. Just shows that if you talk to 100 people or 100 doctors, you're likely to get 100 different views. Ultimately, you choose based on that and then just accept you made the most informed choice you could. Then feel free to change your mind. > > > > > > From: > > Sher Bauman bofus (AT) wbcable (DOT) net> > > Subject: > > Sher' thinking too much? > > To: > > Breathe-Support@ yahoogroups. com > > Date: Tuesday, June 16, > > 2009, 9:50 AM > > > > > > > > > > > > I've > > read on a couple posts lately, re: Dr. Raghu in Seattle, that he > > apparently wants to do bios and/or use prednisone.. > > . > > > > I do > > not want to do either, so I'm wondering if knowing this ahead of time > > would defeat my purpose in going to see him?? > > > > What > > say you? > > > > > > MamaSher; 70, IPF 3-06, OR. > > > > Nasturtiums > > Don't fret about tomorrow, God is already > > there! > > > Quote Link to comment Share on other sites More sharing options...
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