Guest guest Posted July 10, 2008 Report Share Posted July 10, 2008 , Please keep us updated on this Bosentan Study. My pulmonologist said at my last appointment that there was a new study and he was going to see if he could get me in it. Sounds like this might be the same one. I take 125mg Imuran and 10mg Prednisone (weaned from 60mg). The pulmonologists all seem to say this is all they can do for me. The main thing is I was on 60mg of Prednisone and it didn't work so I was weaned down and Imuran was increased to now 125mg. Now that I have been on Imuran for nine months he wants to add Colchicine to see if that helps. The inflammation of the lungs is apparently putting pressure on my heart giving me atrial fibrillations so I take Metoprolol. I have a complication from the lung biopsy surgery where my lungs leak air into my chest/neck from coughing and physical exertion. I see you wrote that you are avoiding Prednisone & Imuran. What are you taking until you get approved for Bosentan? I have considered putting all the meds in the trash if nothing is working and the side effects are incredible. I read that NSIP is supposed to respond to corticosteroids but I don't seem to be. I hope you get into this study and all works well for you. 40/Tx: IPF, NSIP dx:09/2007 Pneumomediastinum, Atrial Fibrillations, and possibly Dermatomyositis 125mg Imuran / 10mg Prednisone / 25mg Metoprolol / 1,000mg Niaspan > > Hi Kieth, > I will be going into the Bosentan study in the next few days. It was FDA approved for Pulmonary Hypertension, something I do not have. > These studies have opened up again for IPF patients because of the possible anti-fibrotic properties in the drug. One of the good things about studies is that you are closely monitored and the drug company picks up the bill. I don't know if you have checked into this or not, but there are some qualification standards that you must meet before being accepted into the study. > I elected to try the study (if accepted), because of the monitoring and there really isn't anything else available at this time and I am doing everything possible to stay away from Prednisone and Imuran. > If you need more info, I will do what I can to get it for you through the study, once I get started. So far I have done the required paper work, PFT's, blood work and waiting for the " Studies " personal Pathologists to confirm my biopsy diagnosis by viewing the slides that were kept from my biopsy. Shouldn't be a problem just a required confirmation. Hopefully > I will be doing the drug by next week. Any way I can help you--just let me know! > I do live in Arizona and go to Lake Havasu all the time--ever been there? > > G. UIP/IPF 5/07 AZ. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 10, 2008 Report Share Posted July 10, 2008 Dear , You may find you are not suitable for the Bosenatn Trial if you are on Prednisone (not sure about Immuran). Prednisone has a better record of helping CELLULAR NSIP as opposed to FIBROTIC NSIP (although is does sometimes also help those patients!) prednisone can also be used to treat underlying conditions that may have lead to the PF in the first place. It may not control the PF but it may stop your underlying condition from worsening. I'm also pretty sure that using Colchine for PF was abandoned after problematic trials a few years back! Check vis Mr Google for the latest! Read the reputable journals like CHEST, or American Journal of Respiratory & Crtical Care Medicine etc. Remember don't just STOP taking any of your medications...Prednisone is particularly dangerous to your health if you just STOP.. you'll set this Board afire with anxiety if you allude to stopping medication without reassuring folks that you mean you'll do it under your Pulmo's supervision! Regards, . > >> > Hi Kieth,> > I will be going into the Bosentan study in the next few days. > It was FDA approved for Pulmonary Hypertension, something I do not have. > > These studies have opened up again for IPF patients because of the> possible anti-fibrotic properties in the drug. One of the good things> about studies is that you are closely monitored and the drug company> picks up the bill. I don't know if you have checked into this or not,> but there are some qualification standards that you must meet before> being accepted into the study. > > I elected to try the study (if accepted), because of the> monitoring and there really isn't anything else available at this time> and I am doing everything possible to stay away from Prednisone and> Imuran. > > If you need more info, I will do what I can to get it for you> through the study, once I get started. So far I have done> the required paper work, PFT's, blood work and waiting for the> "Studies" personal Pathologists to confirm my biopsy diagnosis by> viewing the slides that were kept from my biopsy. Shouldn't be a> problem just a required confirmation. Hopefully > > I will be doing the drug by next week. Any way I can help you--just> let me know! > > I do live in Arizona and go to Lake Havasu all the time--ever> been there?> > > > G. UIP/IPF 5/07 AZ. > > > >> Quote Link to comment Share on other sites More sharing options...
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