Guest guest Posted January 29, 2008 Report Share Posted January 29, 2008 It is great to hear others "in the same mind". I have already decided to not go off of Prozac. I was on 30 mg, but it was upped to 60mg a couple months ago and I'm doing better. I've been thinking about my last appt with Dr. Raghu - I feel I am being given Pred and Im just because that's what they do. I want to know if there are people on this site who have benefited long-term success from using these drugs. My original doc said that nothing will cure PF..they just give us these drugs because that is all they know to do. My Sleep Disorder test is for Feb 13th. My cold hangs on...now my throat is sore and my voice sounds funny! I've noticed that my memor is suffering! For the life of me I could not remember what my house looked like! After some time of struggle with memory, I remembered! Best wishes to all today.. Joy/Seattle Inters PF PAH HPJoy www.thehandcraftedjewelrymall.com/joykiefner/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 29, 2008 Report Share Posted January 29, 2008 Hi Joy, I'm refusing to take prednisone & cyclosporin/azathioprine etc because I don't want to take on the risk of the side-effect profile when I'm not even convinced that my diagnosis is accurate. (Fibrotic NSIP/UIP????) I, like Babs, don't want to be immuno-suppressed as I believe that will just kick off a whole new set of problems for me. I know prednisone acts on infammation & if it was a short course to treat peumonia I'd consider it but NOT high dose, long term treatment regimes. My attitude was quite shocking to the Lung Specialist I saw in Brisbane...he said he'd never had anyone outright refuse treatment before. He said "it's the only thing we have to throw at this disease at the moment" Now I realise I'm an exception to the rule & that there are many on this Board who feel that they're alive because of their prednisone treatment. I'm just a hornery ol' gal who'd rather face one disease path than a whole pile of unknown outcomes! in Oz Dx May 2007 >> It is great to hear others "in the same mind". I have already decided to not go off of Prozac.> I was on 30 mg, but it was upped to 60mg a couple months ago and I'm doing better. I've been thinking about my last appt with Dr. Raghu - I feel I am being given Pred and Im just because that's what they do. I want to know if there are people on this site who have benefited long-term success from using these drugs. My original doc said that nothing will cure PF..they just give us these drugs because that is all they know to do.> > My Sleep Disorder test is for Feb 13th.> > My cold hangs on...now my throat is sore and my voice sounds funny! I've noticed that my memor is suffering! For the life of me I could not remember what my house looked like! After some time of struggle with memory, I remembered!> > Best wishes to all today..> Joy/Seattle> Inters PF> PAH> HP> > > Joy> www.thehandcraftedjewelrymall.com/joykiefner/> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 29, 2008 Report Share Posted January 29, 2008 Thats the thing, its all such a personal decision. My VATS made my decision easy on Prednisone. Had the results been different, I might have tried under a very controlled environment. I don't know. I don't know that anymore than if being married would affect my decision. I certainly think having young kids would have or at least might have. What if I were ten years younger or ten years older? What if I'd never had any depression or anxiety? > > > > It is great to hear others " in the same mind " . I have already decided > to not go off of Prozac. > > I was on 30 mg, but it was upped to 60mg a couple months ago and I'm > doing better. I've been thinking about my last appt with Dr. Raghu - I > feel I am being given Pred and Im just because that's what they do. I > want to know if there are people on this site who have benefited > long-term success from using these drugs. My original doc said that > nothing will cure PF..they just give us these drugs because that is all > they know to do. > > > > My Sleep Disorder test is for Feb 13th. > > > > My cold hangs on...now my throat is sore and my voice sounds funny! > I've noticed that my memor is suffering! For the life of me I could not > remember what my house looked like! After some time of struggle with > memory, I remembered! > > > > Best wishes to all today.. > > Joy/Seattle > > Inters PF > > PAH > > HP > > > > > > Joy > > www.thehandcraftedjewelrymall.com/joykiefner/ > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 29, 2008 Report Share Posted January 29, 2008 your my kind a woman.. I wish I had never taken it. Love and Prayers, Peggyipf 6/04Worry looks around.Sorry looks back,Faith looks up. Hi Joy, I'm refusing to take prednisone & cyclosporin/azathioprine etc because I don't want to take on the risk of the side-effect profile when I'm not even convinced that my diagnosis is accurate. (Fibrotic NSIP/UIP????) I, like Babs, don't want to be immuno-suppressed as I believe that will just kick off a whole new set of problems for me. I know prednisone acts on infammation & if it was a short course to treat peumonia I'd consider it but NOT high dose, long term treatment regimes. My attitude was quite shocking to the Lung Specialist I saw in Brisbane...he said he'd never had anyone outright refuse treatment before. He said "it's the only thing we have to throw at this disease at the moment" Now I realise I'm an exception to the rule & that there are many on this Board who feel that they're alive because of their prednisone treatment. I'm just a hornery ol' gal who'd rather face one disease path than a whole pile of unknown outcomes! in Oz Dx May 2007 >> It is great to hear others "in the same mind". I have already decided to not go off of Prozac.> I was on 30 mg, but it was upped to 60mg a couple months ago and I'm doing better. I've been thinking about my last appt with Dr. Raghu - I feel I am being given Pred and Im just because that's what they do. I want to know if there are people on this site who have benefited long-term success from using these drugs. My original doc said that nothing will cure PF..they just give us these drugs because that is all they know to do.> > My Sleep Disorder test is for Feb 13th.> > My cold hangs on...now my throat is sore and my voice sounds funny! I've noticed that my memor is suffering! For the life of me I could not remember what my house looked like! After some time of struggle with memory, I remembered!> > Best wishes to all today..> Joy/Seattle> Inters PF> PAH> HP> > > Joy> www.thehandcraftedjewelrymall.com/joykiefner/> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 29, 2008 Report Share Posted January 29, 2008 Who knows Peggy with the value of hindsight I may just be the world's most stupid woman BUT sometimes one just has to go with gut feeling & mine was NO WAY! in oz > >> > It is great to hear others "in the same mind". I have already > decided to not go off of Prozac.> > I was on 30 mg, but it was upped to 60mg a couple months ago and > I'm doing better. I've been thinking about my last appt with Dr. > Raghu - I feel I am being given Pred and Im just because that's what > they do. I want to know if there are people on this site who have > benefited long-term success from using these drugs. My original doc > said that nothing will cure PF..they just give us these drugs because > that is all they know to do.> >> > My Sleep Disorder test is for Feb 13th.> >> > My cold hangs on...now my throat is sore and my voice sounds > funny! I've noticed that my memor is suffering! For the life of me I > could not remember what my house looked like! After some time of > struggle with memory, I remembered!> >> > Best wishes to all today..> > Joy/Seattle> > Inters PF> > PAH> > HP> >> >> > Joy> > www.thehandcraftedjewelrymall.com/joykiefner/> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 29, 2008 Report Share Posted January 29, 2008 Joy, You have one of the " BEST " guys in the world looking after your lungs. Don't try to second guess him. Please. UIP/LCH 5.06 CA > > It is great to hear others " in the same mind " . I have already decided to not go off of Prozac. > I was on 30 mg, but it was upped to 60mg a couple months ago and I'm doing better. I've been thinking about my last appt with Dr. Raghu - I feel I am being given Pred and Im just because that's what they do. I want to know if there are people on this site who have benefited long-term success from using these drugs. My original doc said that nothing will cure PF..they just give us these drugs because that is all they know to do. > > My Sleep Disorder test is for Feb 13th. > > My cold hangs on...now my throat is sore and my voice sounds funny! I've noticed that my memor is suffering! For the life of me I could not remember what my house looked like! After some time of struggle with memory, I remembered! > > Best wishes to all today.. > Joy/Seattle > Inters PF > PAH > HP > > > Joy > www.thehandcraftedjewelrymall.com/joykiefner/ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 29, 2008 Report Share Posted January 29, 2008 While I respect his opinion and your high opinion of him and would love to personally see him, being one of the best pulmonologists in the world doesn't make him one of the best psychiatrists. Now, I doubt if you've ever had the experience of withdrawal from a psychiatric medication or that of searching for months or years for one or going without one that works when you greatly need it. If not, you cannot imagine it. Please trust me on that. Furthermore, for someone suffering from depression and on prednisone a withdrawal from Prozac without very careful management by a psychiatrist and a counselor could have devastating consequences. I don't know Joy's circumstances or level of depression, but I will speak in general terms. You combine physical diseases such as ILD, PAH, HP or any other serious mind staggering disease, prednisone, and withdrawal from Prozac and the risk of serious harm, up to and including suicide is very real. I've suffered as bad as one can and had friends and family that has as well. If you told me right now I could be rid of IPF if I'd accept my worst depression and anxiety in return, I'd refuse the offer. That is not hyperbole, but that is my personal situation. I've been at the point of wishing I was dead and seeing absolutely no value in life although never considering suicide. In addition to my own situation, I've had a loved one who came close to suicide from her depression, I've had a friend who all I could get was for her to promise not to kill herself until we talked the next day. I've been in groups with those who tried. Now, I'm by no means saying whether or not she should ultimately and carefully make a change from Prozac. But so many more questions do have to be answered. To what? How? If information easily attained doesn't show the effect of Prozac he refers to then which other meds is that true for? Is it all SSRI's? Joy has a very complex decision that only she can make with the help of all her doctors, not just her pulmonologist. Now, as to prednisone that is also a personal choice based on information and recommendations by one's doctor. There are many here who feel they owe their lives today to prednisone, there are others with horrible experiences. I would never profess to know what would be the right decision for anyone, but there are issues beyond just its possible benefit for PF. I have no idea what I would do in Joy's situation. But, anyone has the right to question any treatment from any doctor, particularly one that there is no concensus view of. I'm so glad for you that your treatment has been positive. I hope Joy makes the choice right for her and her treatment is. Her doctor is one of the best, but he's not a god and while she should respect and value all his advice, ask him any additional questions she has, discuss her concerns with him at length, Joy has to do what's right for her and reserve the right as well to later change her mind. I've certainly made decisions for today. But would I ever say I'm not going to change my mind at any point? No. I may as my circumstances change, more information is known, advances are made, or my medical advice from all my doctors change. > > > > It is great to hear others " in the same mind " . I have already > decided to not go off of Prozac. > > I was on 30 mg, but it was upped to 60mg a couple months ago and > I'm doing better. I've been thinking about my last appt with Dr. > Raghu - I feel I am being given Pred and Im just because that's what > they do. I want to know if there are people on this site who have > benefited long-term success from using these drugs. My original doc > said that nothing will cure PF..they just give us these drugs because > that is all they know to do. > > > > My Sleep Disorder test is for Feb 13th. > > > > My cold hangs on...now my throat is sore and my voice sounds > funny! I've noticed that my memor is suffering! For the life of me I > could not remember what my house looked like! After some time of > struggle with memory, I remembered! > > > > Best wishes to all today.. > > Joy/Seattle > > Inters PF > > PAH > > HP > > > > > > Joy > > www.thehandcraftedjewelrymall.com/joykiefner/ > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2008 Report Share Posted January 30, 2008 Bruce, I don't believe I was speaking to the Prozac issue at all. I was addressing the statement about prescribing Pred " because thats what they do " and that I didn't believe Dr Raghu would prescribe the Pred unless he truly felt it would have a positive impact on her pulmonary issues. No more, no less. UIP/LCH 5.06 CA > > > > > > It is great to hear others " in the same mind " . I have already > > decided to not go off of Prozac. > > > I was on 30 mg, but it was upped to 60mg a couple months ago and > > I'm doing better. I've been thinking about my last appt with Dr. > > Raghu - I feel I am being given Pred and Im just because that's what > > they do. I want to know if there are people on this site who have > > benefited long-term success from using these drugs. My original doc > > said that nothing will cure PF..they just give us these drugs > because > > that is all they know to do. > > > > > > My Sleep Disorder test is for Feb 13th. > > > > > > My cold hangs on...now my throat is sore and my voice sounds > > funny! I've noticed that my memor is suffering! For the life of > me I > > could not remember what my house looked like! After some time of > > struggle with memory, I remembered! > > > > > > Best wishes to all today.. > > > Joy/Seattle > > > Inters PF > > > PAH > > > HP > > > > > > > > > Joy > > > www.thehandcraftedjewelrymall.com/joykiefner/ > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2008 Report Share Posted January 30, 2008 That's how I understood your post . I realize that the prednisone is a "hot button" issue for many folks but there are instances where the benefits far outweigh the negatives. In my case the 8 or 9 months I spent on prednisone initially likely saved my life and then stablized my disease. I've been off it completely for nearly a year and remain stable but should I start to deteriorate I would not hesitate for an instant to take it again.There are lots of nasty side effects but I'd rather be here coping with that than not here at all. If a super specialist such as Dr Raghu is advising prednisone it's safe to assume he believes there will be a true benefit and he's not doing it just for the sake of prescribing something. And of course it's ultimately up to Joy to say yes or no to his advice. Beth in NC age 48 Fibrotic NSIP 06/06 "For as long as I shall live, I will testify to Love." Re: Prozac Bruce,I don't believe I was speaking to the Prozac issue at all. I wasaddressing the statement about prescribing Pred "because thats whatthey do" and that I didn't believe Dr Raghu would prescribe the Predunless he truly felt it would have a positive impact on her pulmonaryissues. No more, no less. UIP/LCH 5.06 CA> > >> > > It is great to hear others "in the same mind". I have already> > decided to not go off of Prozac.> > > I was on 30 mg, but it was upped to 60mg a couple months ago and> > I'm doing better. I've been thinking about my last appt with Dr.> > Raghu - I feel I am being given Pred and Im just because that's what> > they do. I want to know if there are people on this site who have> > benefited long-term success from using these drugs. My original doc> > said that nothing will cure PF..they just give us these drugs > because> > that is all they know to do.> > > > > > My Sleep Disorder test is for Feb 13th.> > > > > > My cold hangs on...now my throat is sore and my voice sounds> > funny! I've noticed that my memor is suffering! For the life of > me I> > could not remember what my house looked like! After some time of> > struggle with memory, I remembered!> > > > > > Best wishes to all today..> > > Joy/Seattle> > > Inters PF> > > PAH> > > HP> > > > > > > > > Joy> > > www.thehandcraftedj ewelrymall. com/joykiefner/> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2008 Report Share Posted January 30, 2008 Beth can you say 30 1 or 2-days FLORIDA TIME. We are just an hour from Daytona Beach. If the Spring Brakers haven't invaded to badly we can go over and drive on the beach. How bout that???? Love and Prayers, Peggyipf 6/04Worry looks around.Sorry looks back,Faith looks up. That's how I understood your post . I realize that the prednisone is a "hot button" issue for many folks but there are instances where the benefits far outweigh the negatives. In my case the 8 or 9 months I spent on prednisone initially likely saved my life and then stablized my disease. I've been off it completely for nearly a year and remain stable but should I start to deteriorate I would not hesitate for an instant to take it again.There are lots of nasty side effects but I'd rather be here coping with that than not here at all. If a super specialist such as Dr Raghu is advising prednisone it's safe to assume he believes there will be a true benefit and he's not doing it just for the sake of prescribing something. And of course it's ultimately up to Joy to say yes or no to his advice. Beth in NC age 48 Fibrotic NSIP 06/06 "For as long as I shall live, I will testify to Love." Re: ProzacBruce,I don't believe I was speaking to the Prozac issue at all. I wasaddressing the statement about prescribing Pred "because thats whatthey do" and that I didn't believe Dr Raghu would prescribe the Predunless he truly felt it would have a positive impact on her pulmonaryissues. No more, no less. UIP/LCH 5.06 CA> > >> > > It is great to hear others "in the same mind". I have already> > decided to not go off of Prozac.> > > I was on 30 mg, but it was upped to 60mg a couple months ago and> > I'm doing better. I've been thinking about my last appt with Dr.> > Raghu - I feel I am being given Pred and Im just because that's what> > they do. I want to know if there are people on this site who have> > benefited long-term success from using these drugs. My original doc> > said that nothing will cure PF..they just give us these drugs > because> > that is all they know to do.> > > > > > My Sleep Disorder test is for Feb 13th.> > > > > > My cold hangs on...now my throat is sore and my voice sounds> > funny! I've noticed that my memor is suffering! For the life of > me I> > could not remember what my house looked like! After some time of> > struggle with memory, I remembered!> > > > > > Best wishes to all today..> > > Joy/Seattle> > > Inters PF> > > PAH> > > HP> > > > > > > > > Joy> > > www.thehandcraftedj ewelrymall. com/joykiefner/> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2008 Report Share Posted January 30, 2008 Well, as the title of your post was re: Prozac, I guess I assumed you were speaking to that and should not have. Even so, I respectfully disagree on her automatically accepting his recommendation even of prednisone. I think she has to make an informed choice in conjunction with him. I believe many doctors including Dr. Raghu would characterize it as " may have a positive impact " and I don't know any who would put odds on that " may. " I do not know her details and would suggest only that she talk further with him to get a sense of comfort. You are comfortable in doing as he advised. She has more questions and its reasonable she ask him those questions. > > > > > > > > It is great to hear others " in the same mind " . I have already > > > decided to not go off of Prozac. > > > > I was on 30 mg, but it was upped to 60mg a couple months ago and > > > I'm doing better. I've been thinking about my last appt with Dr. > > > Raghu - I feel I am being given Pred and Im just because that's what > > > they do. I want to know if there are people on this site who have > > > benefited long-term success from using these drugs. My original doc > > > said that nothing will cure PF..they just give us these drugs > > because > > > that is all they know to do. > > > > > > > > My Sleep Disorder test is for Feb 13th. > > > > > > > > My cold hangs on...now my throat is sore and my voice sounds > > > funny! I've noticed that my memor is suffering! For the life of > > me I > > > could not remember what my house looked like! After some time of > > > struggle with memory, I remembered! > > > > > > > > Best wishes to all today.. > > > > Joy/Seattle > > > > Inters PF > > > > PAH > > > > HP > > > > > > > > > > > > Joy > > > > www.thehandcraftedjewelrymall.com/joykiefner/ > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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