Guest guest Posted June 2, 2008 Report Share Posted June 2, 2008 Jack, for me personally, I take Prednisone for my Crohn's Disease. I'm not on any medication for my PF...when I do require 02 because I've been taken to hospital by ambulance they have me on 3l. I do take Asthma Inhalers. When I saw my lung dr, question he asked me was, when I'm on Prednisone do I see a difference in my breathing and I told him NO, I see no difference. Also for me, Prednisone has caused more problems... Irene PF 03/07 Raynaud's Disease 09/07 Crohn's Disease 03/95 ---- Original Message ---- To: Breathe-Support Group <Breathe-Support > Sent: Mon, 2 Jun 2008 7:40 pm Subject: Prednisone 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 Meet the new AOL.ca. Free radio, music, videos, news & entertainment – with a Canadian perspective. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 2, 2008 Report Share Posted June 2, 2008 Jack, My experience with prednisone is positive. However (and it's a big however) I have a different type of fibrosis than you do. I have NSIP which has substantial inflammation. Prednisone is a steroidal anti-inflammatory agent and as such can reduce inflammation and stablize the illness. That has been the case for me. If you have IPF/UIP prednisone is unlikely to help. That's according to pretty much every study that's ever been done on the issue. Your regular doctor likely just thinks someone should be doing something, anything. Most doctors have a hard time coping with the idea that there is truly not much to be done. All this is only my opinion based on my own experience, research and your stated diagnosis of IPF/UIP. I can't remember if you've had a biopsy. If there is any doubt at all about your diagnosis, if there is some possibility it could be a different form of fibrosis all my answers could change dramatically. Hope this helps a little. Beth Age 48 Fibrotic NSIP 06/06 Change everything. Love and Forgive Prednisone 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 Hello Jack, The combination of Imuran, Prednisone and NAC have stabilized my IPF. Steve 60 from WA IPF 2006 Parkinsons 2008 Alzheimers 2008 Reply-To: Breathe-Support To: Breathe-Support Group <Breathe-Support >Subject: PrednisoneDate: Mon, 2 Jun 2008 17:40:43 -0700 (PDT) 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 I have not been on it long . I do not like it . It makes my sugar high and I am gaining weight . My doctor want to get me off it t is not used as a treatment for Disease it is for inflammation not the lungs . I don't think you should be on it unless you are having a hard time breathing and only for a wile , I have been on it for about 3 weeks and they are trying to get me off it cutting back on what I'm using . My regular Doctor Just put me on some Spiriva and that is about it . There is no cure that they know of . The only thing what they gave me does is help me breath better . I go to 's Hopkins Hospital in Baltimore . Witch is not on the top 13 and I don't know why . But they are trying to line me up me lined up a lung transplant . There are so many test for this . I hope I can pass them all . I am confident in what they are telling me . If you are breathing well and try to not get sick with anything like colds or things that will affect your lungs . Good luck and God bless us all Walt Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 3, 2008 Report Share Posted June 3, 2008 Thank you, Beth. Yes, I had a biopsy just two weeks ago which confirmed my diagnosis. I understrand that both UIP/IPF are inflammatory diseases, but I don't understand why an anti-inflammatory medicine would not help. Of course, I am still terribly ignorant about this disease, despite reading and reading. What's lacking is not having locally a knowledgable person to talk with. If it weren't for this group, I would be groping in the dark. Thanks to all. Jack 79/UIP?IPF /6/05 Prednisone 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 Thanks, Steve. A ray of hope. Jack PrednisoneDate: Mon, 2 Jun 2008 17:40:43 -0700 (PDT) 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 Thanks, . I think I'll look into it. Jack Prednisone 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 Beth, I didn't know Durham was closer to Duke & Dr. on. That is important to me, so I'll start scanning the listings for Durham. My son works in something called somethng Triangle which is probably in Raleigh. It all sounds like one large city to me. You bet you will high on my to do list when I come down. Jack 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 4, 2008 Report Share Posted June 4, 2008 >Jack, I was put on prednisone & immuran when I was dx. I was stable for 2 years. I went off the immuran & was weening off the prednisone this last year. I was suffering from chronic sinus infections and after a year I refused to lower dose anymore. I started at 40mg. and was down to 6mg. On May8 my tests showed my lungs were worse. So I am on 15mg. prednisone & immuran again. The doctor says I don't have the kind of pf that responds to prednisone but they can't tell my why I stayed stable for 2 years. I hate the side effects, I gained 50 lbs.but hey I am still able to do things. Sometimes I think we just have to listen to our bodies and not let the Drs.tell us what to do. Because frankly, I am of the oppinion they don't know what to do with us.Sorry to hear you've joined the club,but stay positive. Kathy53dx10/04 > Jack, > My experience with prednisone is positive. However (and it's a big however) I have a different type of fibrosis than you do. I have NSIP which has substantial inflammation. Prednisone is a steroidal anti- inflammatory agent and as such can reduce inflammation and stablize the illness. That has been the case for me. > If you have IPF/UIP prednisone is unlikely to help. That's according to pretty much every study that's ever been done on the issue. Your regular doctor likely just thinks someone should be doing something, anything. Most doctors have a hard time coping with the idea that there is truly not much to be done. > All this is only my opinion based on my own experience, research and your stated diagnosis of IPF/UIP. I can't remember if you've had a biopsy. If there is any doubt at all about your diagnosis, if there is some possibility it could be a different form of fibrosis all my answers could change dramatically. > Hope this helps a little. > > Beth > Age 48 Fibrotic NSIP 06/06 > > Change everything. Love and Forgive > > > > > > Prednisone > > > 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...
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