Guest guest Posted April 15, 2008 Report Share Posted April 15, 2008 K. I'm one of those "lucky" people who has been made stable by prednisone..however you have to lessen the dosage very slowly. My dose was 40mg at the beginning...it's been 2 1/2 years and with steady very small increments I am now at 11.25mg. The doctor lowered the dose by 1-1.25mg each time ( and the time on the lowered dosage could last for 2-3 months). I have had little or no problems with the lowering of the dosage. I'm going to have osteoporosis, cataracts, and GERD, and thinning hair forever...but my lungs are stable!!Stability is a good thing! Please, in the midst of all your worries about your husband...don't forget about you!!!! Here's wishing you both a better day. Z fibriotic NSIP/05 Z 64, fibriotic NSIP/o5/PA And “mild” PH/10/07 and Reynaud’s too!! No, NSIP was not self-inflicted…I never smoked! Potter, reader,carousel lover and MomMom to Darah and Sara “I’m gonna be iron like a lion in Zion” Bob Marley Bruce Moreland wrote: Withdrawal might be the better term. But, you have to come off prednisone very slowly....make that very very slowly. You reduce it a little at a time and it can take quite a while. Thats what I meant by "tailing off" as opposed to "cold turkey." The withdrawal from Prednisone can be quite bad and make one feel worse than even the prednisone did. It must be done gradually and the pace of reduction geared toward the patient. If one reacts to a reduction too badly then it needs to be reduced only half as much or more time between reductions. A doctor will outline a plan but if that plan is turning out to be too quickly, one must modify it with the doctor. Everyone responds differently. > > > > > > > > > > > > > > Sher, > > > > > > > I'm happy to hear the doctors have switched your diagnosis. > NSIP > > > > > > is definitely preferable to IPF, the life expectancy is much > longer > > > > > > and as a bonus, it does not always progress. As a matter of > fact, > > > > > > Dr. on at Duke just told me last month that he's seen > > > > patients > > > > > > with NSIP who have been "stable for decades." I mean I know > that my > > > > > > experience may be different but anything that gives us hope is > > > > > > helpful! > > > > > > > Have they switched your dx based on the behavior of the > > > > disease or > > > > > > also on the ct scan results? NSIP is usually very identifiable > > > > by CT > > > > > > scan. To identify the type of NSIP (fibrotic, cellular or > mixed) > > > > you > > > > > > would need a biopsy. But at this point it probably doesn't > > > > matter as > > > > > > long as your stable. I understand why you wouldn't put > yourself > > > > > > through that. I don't regret my biopsy but I totally get why > you've > > > > > > chosen not to go down that road. > > > > > > > In the meantime, celebrate stability!! Stable is my happy > word!! > > > > > > > Beth > > > > > > > Age 48 Fibrotic NSIP 06/06 > > > > > > > > > > > > > > Change everything. Love and Forgive > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Caro > > > > ASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08, > > > > RHEUMATOID ARTHRITIS 03/08 > > > > Mississippi > > > > __________________________________________________ > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 15, 2008 Report Share Posted April 15, 2008 Thanks, that was enlightening! Very enlightening. K Illinois Zion wrote: K. I'm one of those "lucky" people who has been made stable by prednisone..howeveryou have to lessen the dosage very slowly. My dose was 40mg at the beginning...it's been 2 1/2years and with steady very small increments I am now at 11.25mg. The doctor lowered the dose by 1-1.25mg each time ( and the time on the lowered dosage could last for 2-3 months). I have had little or no problems with the lowering of the dosage.I'm going to have osteoporosis, cataracts, and GERD, and thinning hair forever...but my lungs are stable!!Stability is a good thing!Please, in the midst of all your worries about your husband...don't forget about you!!!!Here's wishing you both a better day. Z 64, fibriotic NSIP/o5/PA And “mild” PH/10/07 and Reynaud’s too!! No, NSIP was not self-inflicted…I never smoked! Potter, reader,carousel lover and MomMom to Darah and Sara “I’m gonna be iron like a lion in Zion” Bob Marley <!--[if !supportEmptyParas]--> <!--[endif]--> <!--[if !supportEmptyParas]--> <!--[endif]-->Bruce Moreland wrote: Withdrawal might be the better term. But, you have to come offprednisone very slowly....make that very very slowly. You reduce it alittle at a time and it can take quite a while. Thats what I meant by"tailing off" as opposed to "cold turkey." The withdrawal fromPrednisone can be quite bad and make one feel worse than even theprednisone did. It must be done gradually and the pace of reductiongeared toward the patient. If one reacts to a reduction too badly thenit needs to be reduced only half as much or more time betweenreductions. A doctor will outline a plan but if that plan is turning outto be too quickly, one must modify it with the doctor. Everyone respondsdifferently.> > > > > > >> > > > > > > Sher,> > > > > > > I'm happy to hear the doctors have switched yourdiagnosis.> NSIP> > > > > > is definitely preferable to IPF, the life expectancy is much> longer> > > > > > and as a bonus, it does not always progress. As a matter of> fact,> > > > > > Dr. on at Duke just told me last month that he's seen> > > > patients> > > > > > with NSIP who have been "stable for decades." I mean I know> that my> > > > > > experience may be different but anything that gives us hopeis> > > > > > helpful!> > > > > > > Have they switched your dx based on the behavior of the> > > > disease or> > > > > > also on the ct scan results? NSIP is usually veryidentifiable> > > > by CT> > > > > > scan. To identify the type of NSIP (fibrotic, cellular or> mixed)> > > > you> > > > > > would need a biopsy. But at this point it probably doesn't> > > > matter as> > > > > > long as your stable. I understand why you wouldn't put> yourself> > > > > > through that. I don't regret my biopsy but I totally get why> you've> > > > > > chosen not to go down that road.> > > > > > > In the meantime, celebrate stability!! Stable is my happy> word!!> > > > > > > Beth> > > > > > > Age 48 Fibrotic NSIP 06/06> > > > > > >> > > > > > > Change everything. Love and Forgive> > > > > > >> > > > > >> > > > >> > > >> > > >> > > >> > > >> > > > Caro> > > > ASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP01/08,> > > > RHEUMATOID ARTHRITIS 03/08> > > > Mississippi> > > > __________________________________________________> > > > Quote Link to comment Share on other sites More sharing options...
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