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...
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...
Guest guest Posted July 10, 2008 Report Share Posted July 10, 2008 , Thanks for the info. I definitely meant to stop/change medication under the Pulmonologist's counsel. It's just difficult trying to see what works and now he wants to introduce Colchicine. I will definitely research Colchicine before going on it. > > > > > > 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 , Thanks for the info. I definitely meant to stop/change medication under the Pulmonologist's counsel. It's just difficult trying to see what works and now he wants to introduce Colchicine. I will definitely research Colchicine before going on it. > > > > > > 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 , Thanks for the info. I definitely meant to stop/change medication under the Pulmonologist's counsel. It's just difficult trying to see what works and now he wants to introduce Colchicine. I will definitely research Colchicine before going on it. > > > > > > 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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