Guest guest Posted June 2, 2008 Report Share Posted June 2, 2008 I've read many posts re Prednisone, nearly all of them negative. Are there any positives? I ask because in the three years since dx, the pulmo has not prescribed any medication nor even mentioned any. When I told my regular doctor this, he was angry and said I should have been Prenisone immediately. He thinks I should be on it now. I have an appointment with the pulmo coming up and will bring up the issue of Prednisone. I don't have much faith in the pulmo since all he does is look at the xrays and ct scans and the breathing results and nods his head. Obviously, if there are any positives to balance the negatives, I would want to take it. So many of you have had experience with this drug that your comments will help me decide. Jack 79/UIP/IPF/6 - 05 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 2, 2008 Report Share Posted June 2, 2008 - Jack, we are a few of us here who have benefitted from Prednosone.I am one of them I have been on for 13 yrs, from 6omg (oral) to as low as 5mg .at present on 10mg and fairly stable i think i owe to prednisonethat ia m still alive.I have taken 120mg by IV too. I was diagnosed with IPF in 1995 but it could be NSIP I have several side effects including severe osteoporosis but I am still here .I am on o2 24/7 at 2lit permin when static and 4lit on exertion I f you read our posts you will know it doesnt work in all cases , you will have to take your own decision Geeta-- > > I've read many posts re Prednisone, nearly all of them negative. Are there any positives? I ask because in the three years since dx, the pulmo has not prescribed any medication nor even mentioned any. When I told my regular doctor this, he was angry and said I should have been Prenisone immediately. He thinks I should be on it now. > I have an appointment with the pulmo coming up and will bring up the issue of Prednisone. I don't have much faith in the pulmo since all he does is look at the xrays and ct scans and the breathing results and nods his head. > Obviously, if there are any positives to balance the negatives, I would want to take it. So many of you have had experience with this drug that your comments will help me decide. > Jack > 79/UIP/IPF/6 - 05 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 2, 2008 Report Share Posted June 2, 2008 Jack, There is a study that is starting in the next couple weeks involving the drug BOSENTIN, your Pulmo may or may not know about it--you might ask him. I am going to participate in it as I have been already approved (just waiting for the ethics committee to finish paper work). There also was a study done with another drug Sildenafil (Viagra), I do not know anything about the results of that study. If your Pulmo doesn't know about the Bosentin study--tell him the Mayo Clinc is one of the participants along with alot of other Hospitals-----Then get a different Pulmo or send him the bill for the info!!!! I have done a self study involving Sildenafil and a combination of my other prescribed drugs and feel that it helped my breathing, but the only reason I have stopped is because of the up coming Bosentin study I will be in. If you want to talk more about it let me know I can be found here or in the database. G. UIP/IPF 5/07 AZ. study Subject: PrednisoneTo: "Breathe-Support Group" <Breathe-Support >Date: Tuesday, June 3, 2008, 12:40 AM I've read many posts re Prednisone, nearly all of them negative. Are there any positives? I ask because in the three years since dx, the pulmo has not prescribed any medication nor even mentioned any. When I told my regular doctor this, he was angry and said I should have been Prenisone immediately. He thinks I should be on it now. I have an appointment with the pulmo coming up and will bring up the issue of Prednisone. I don't have much faith in the pulmo since all he does is look at the xrays and ct scans and the breathing results and nods his head. Obviously, if there are any positives to balance the negatives, I would want to take it. So many of you have had experience with this drug that your comments will help me decide. Jack 79/UIP/IPF/6 - 05 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 2, 2008 Report Share Posted June 2, 2008 Jack, There is a study that is starting in the next couple weeks involving the drug BOSENTIN, your Pulmo may or may not know about it--you might ask him. I am going to participate in it as I have been already approved (just waiting for the ethics committee to finish paper work). There also was a study done with another drug Sildenafil (Viagra), I do not know anything about the results of that study. If your Pulmo doesn't know about the Bosentin study--tell him the Mayo Clinc is one of the participants along with alot of other Hospitals-----Then get a different Pulmo or send him the bill for the info!!!! I have done a self study involving Sildenafil and a combination of my other prescribed drugs and feel that it helped my breathing, but the only reason I have stopped is because of the up coming Bosentin study I will be in. If you want to talk more about it let me know I can be found here or in the database. G. UIP/IPF 5/07 AZ. study Subject: PrednisoneTo: "Breathe-Support Group" <Breathe-Support >Date: Tuesday, June 3, 2008, 12:40 AM I've read many posts re Prednisone, nearly all of them negative. Are there any positives? I ask because in the three years since dx, the pulmo has not prescribed any medication nor even mentioned any. When I told my regular doctor this, he was angry and said I should have been Prenisone immediately. He thinks I should be on it now. I have an appointment with the pulmo coming up and will bring up the issue of Prednisone. I don't have much faith in the pulmo since all he does is look at the xrays and ct scans and the breathing results and nods his head. Obviously, if there are any positives to balance the negatives, I would want to take it. So many of you have had experience with this drug that your comments will help me decide. Jack 79/UIP/IPF/6 - 05 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 2, 2008 Report Share Posted June 2, 2008 Jack, There is a study that is starting in the next couple weeks involving the drug BOSENTIN, your Pulmo may or may not know about it--you might ask him. I am going to participate in it as I have been already approved (just waiting for the ethics committee to finish paper work). There also was a study done with another drug Sildenafil (Viagra), I do not know anything about the results of that study. If your Pulmo doesn't know about the Bosentin study--tell him the Mayo Clinc is one of the participants along with alot of other Hospitals-----Then get a different Pulmo or send him the bill for the info!!!! I have done a self study involving Sildenafil and a combination of my other prescribed drugs and feel that it helped my breathing, but the only reason I have stopped is because of the up coming Bosentin study I will be in. If you want to talk more about it let me know I can be found here or in the database. G. UIP/IPF 5/07 AZ. study Subject: PrednisoneTo: "Breathe-Support Group" <Breathe-Support >Date: Tuesday, June 3, 2008, 12:40 AM I've read many posts re Prednisone, nearly all of them negative. Are there any positives? I ask because in the three years since dx, the pulmo has not prescribed any medication nor even mentioned any. When I told my regular doctor this, he was angry and said I should have been Prenisone immediately. He thinks I should be on it now. I have an appointment with the pulmo coming up and will bring up the issue of Prednisone. I don't have much faith in the pulmo since all he does is look at the xrays and ct scans and the breathing results and nods his head. Obviously, if there are any positives to balance the negatives, I would want to take it. So many of you have had experience with this drug that your comments will help me decide. Jack 79/UIP/IPF/6 - 05 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 3, 2008 Report Share Posted June 3, 2008 Jack, Well you sure do have enough going on! It makes my head spin to even think about it. Just be cognizant of your main concern, looking after yourself. Has to be your first priority! You're right of course choosing a pulmonologist, any doctor really can feel like a crapshoot. The only idea I had was to call Leanne Storch at the Foundation and see if they know of anyone in your part of Maine. It's a longshot though. I do think you're on the right track though by planning a sit down with your current pulmo. Sometimes we need to pull info out of them but it's worth the effort. My parents and I went through the real estate issues last year. Nothing as complex as yours but enough nonetheless. I ended up landing in Durham. New house built to our specs by a semi-custom builder. It's a nice quiet neighborhood but close to necessities. High on my list was being close to Duke and knowing that if I dial 911 the paramedics will take me to Duke. My home is a short 10 minute ride to the Duke clinic building where I see Dr. on. Pittsboro is lovely but I understand your hesitation. Chapel Hill may be more to your liking but you are closer there to UNC than to Duke. That may or may not be a consideration for you. If you're in the area this summer I'd love to meet you for lunch. Its always good to meet folks from the board in person. There always seems to be such an immediate connection and comfort level. Email me if you make plans to be in the area! Beth Age 48 Fibrotic NSIP 06/06 Change everything. Love and Forgive Re: Prednisone Beth, Yes, I have thought of changing pulmos, but to whom? There are several here in Bangor, but how does one make a choice? It is easy to want Dr. on - his reputation preceeds him. I see my current doctor next month and will have a more frank discussion with him before making any decision. I want him to be more forthcoming on my prognosis and what he forsees in terms of treatment or non-treatment and his rational. It may be that waiting until I relocate is the better solution Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 3, 2008 Report Share Posted June 3, 2008 Been on Prednisone every day since 1998. From 60 to 10mg, been at 20 for over a year. I take it for my Polymositis which causes my UIP. If the PM doesn't go in to a flare my UIP progress is slower P Jack Marshall wrote: I've read many posts re Prednisone, nearly all of them negative. Are there any positives? I ask because in the three years since dx, the pulmo has not prescribed any medication nor even mentioned any. When I told my regular doctor this, he was angry and said I should have been Prenisone immediately. He thinks I should be on it now. I have an appointment with the pulmo coming up and will bring up the issue of Prednisone. I don't have much faith in the pulmo since all he does is look at the xrays and ct scans and the breathing results and nods his head. Obviously, if there are any positives to balance the negatives, I would want to take it. So many of you have had experience with this drug that your comments will help me decide. Jack 79/UIP/IPF/6 - 05 P PM (Polymositis) 12/98, UIP 8/00, o2 24/7 8/04, PH 3/06, ILL yo 59 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 3, 2008 Report Share Posted June 3, 2008 Been on Prednisone every day since 1998. From 60 to 10mg, been at 20 for over a year. I take it for my Polymositis which causes my UIP. If the PM doesn't go in to a flare my UIP progress is slower P Jack Marshall wrote: I've read many posts re Prednisone, nearly all of them negative. Are there any positives? I ask because in the three years since dx, the pulmo has not prescribed any medication nor even mentioned any. When I told my regular doctor this, he was angry and said I should have been Prenisone immediately. He thinks I should be on it now. I have an appointment with the pulmo coming up and will bring up the issue of Prednisone. I don't have much faith in the pulmo since all he does is look at the xrays and ct scans and the breathing results and nods his head. Obviously, if there are any positives to balance the negatives, I would want to take it. So many of you have had experience with this drug that your comments will help me decide. Jack 79/UIP/IPF/6 - 05 P PM (Polymositis) 12/98, UIP 8/00, o2 24/7 8/04, PH 3/06, ILL yo 59 Quote Link to comment Share on other sites More sharing options...
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