Guest guest Posted January 31, 2002 Report Share Posted January 31, 2002 Werner, My problem is similar to yours. I really have only one main problem (although it's a big one) and that is breathing. My airways in both trachea and both main bronchial airways are very floppy and there are places that collapse when I lie down on my back. I do not have a trach tube or stent. I use a C-PAP machine to artificially stent my airways open both at night and 2-3 times during the day. I take Cytoxan daily and Prednisone plus Serevent and Singulair. I was diagnosed on March 29, 2001and have done pretty well. If I hadn't received bronchitis from my dear granddaughter, I'd probably have my Prednisone use down to 5 mg per day. But in addition to antibiotics, I am currently taking 40 mg of Prednisone to calm down the inflammation in my airways. I was also diagnosed with Wegener's Granulomatosis. But that seems to be in remission at this time. Other than my one big problem, RP has not been too cruel to me except that I can no longer work because of shortness of breath all the time. Question on steroids > Hi all, > > this is Werner from Germany. My problem with RP is " only " a problem with > breathing. RP damaged trachea and bronchi. For two years I take pred, > starting with 50 mg/d and am now on 20 mg/d. Additionally I inhale Budenosid, > an equivalent substance to Pred. It should work directly in the airways. Has > anybody experience with substituting pred by inhaled corticoids? > > So far, I do quite well. RP started in my case in Oct. 99 and was diagnosed > in May 2000 after a rigid bronchoskopy. This bronchoscopy made me living for > two weeks on a breathing machine. That is why I also have a tracheotomy, but > fortunately no longer a tube. A small whole in the trachea remained. > > Many greetings > Werner > > > DISCLAIMER!! > WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2002 Report Share Posted January 31, 2002 Werner; My problem is very similar to yours. My trachea is collapsing. I'm using steroid inhalers, Enbrel, and off and on prednisone. I was diagnosed in 1999. I was off the prednisone for 8 months, during that time I was only using steroid inhalers plus Enbrel, than I had a very bad relapse, was hospitalized for 24 hours and given IV-steroids every 6 hours. Four weeks ago a had yet another flare up. This time I had to spend 4 days in ICU. I'm now scheduled for surgery next week to receive a Y-stent. While I was in ICU they put me on a Bi-Pep. The CT-scan showed that my right lung was full of air. My doctors feel that I need a stent at this time to prevent a possible lung collapse in the future. By the way, I grew up in Ruesselsheim. I live in Tacoma, WA for the past 8 years. Tacoma is 50 miles south of Seattle. I hope this will help. Ute Re: Question on steroids Werner, My problem is similar to yours. I really have only one main problem (although it's a big one) and that is breathing. My airways in both trachea and both main bronchial airways are very floppy and there are places that collapse when I lie down on my back. I do not have a trach tube or stent. I use a C-PAP machine to artificially stent my airways open both at night and 2-3 times during the day. I take Cytoxan daily and Prednisone plus Serevent and Singulair. I was diagnosed on March 29, 2001and have done pretty well. If I hadn't received bronchitis from my dear granddaughter, I'd probably have my Prednisone use down to 5 mg per day. But in addition to antibiotics, I am currently taking 40 mg of Prednisone to calm down the inflammation in my airways. I was also diagnosed with Wegener's Granulomatosis. But that seems to be in remission at this time. Other than my one big problem, RP has not been too cruel to me except that I can no longer work because of shortness of breath all the time. Question on steroids > Hi all, > > this is Werner from Germany. My problem with RP is " only " a problem with > breathing. RP damaged trachea and bronchi. For two years I take pred, > starting with 50 mg/d and am now on 20 mg/d. Additionally I inhale Budenosid, > an equivalent substance to Pred. It should work directly in the airways. Has > anybody experience with substituting pred by inhaled corticoids? > > So far, I do quite well. RP started in my case in Oct. 99 and was diagnosed > in May 2000 after a rigid bronchoskopy. This bronchoscopy made me living for > two weeks on a breathing machine. That is why I also have a tracheotomy, but > fortunately no longer a tube. A small whole in the trachea remained. > > Many greetings > Werner > > > DISCLAIMER!! > WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2002 Report Share Posted January 31, 2002 Werner, I use a steroid inhaler. It is not enough for me though, I am still on 20mg. of Pred a day along with Cytoxan. Wish I could be of more help. I am happy to hear you are doing well. Sandy ----- Original Message ----- Hi all,this is Werner from Germany. My problem with RP is "only" a problem with breathing. RP damaged trachea and bronchi. For two years I take pred, starting with 50 mg/d and am now on 20 mg/d. Additionally I inhale Budenosid, an equivalent substance to Pred. It should work directly in the airways. Has anybody experience with substituting pred by inhaled corticoids?So far, I do quite well. RP started in my case in Oct. 99 and was diagnosed in May 2000 after a rigid bronchoskopy. This bronchoscopy made me living for two weeks on a breathing machine. That is why I also have a tracheotomy, but fortunately no longer a tube. A small whole in the trachea remained.Many greetingsWernerDISCLAIMER!!WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2002 Report Share Posted January 31, 2002 Ute and Werner, Sounds like we belong to the same club. Due to the permanent damage RP has caused to my trach and bronch (about 80%), a Y stent has been manufactured for me and sits at the Mayo Clinic in Rochester, MN for when I absolutely need it. Mayo seems to be very conservative about stents. I have responded well to the C-PAP machine and the Cytoxan I take orally each day seems to be effective. I'm still working on reducing the Prednisone, but also use Serevent disk twice a day and just started using Atrovent. But no steroid inhalers. During my pulmonary function tests, we've tried Albuterol before and after the tests with no difference. Please let me know how you do with your stent. I don't think I'm that far off myself. There is another person in this group who has a stent and is very happy with it. Her name is Harvey at Ronnielyn27@.... I'll be praying for you and hoping for a great outcome. Please keep me posted when you are able. Thanks, at katdavis@... Question on steroids > > > > Hi all, > > > > this is Werner from Germany. My problem with RP is " only " a problem with > > breathing. RP damaged trachea and bronchi. For two years I take pred, > > starting with 50 mg/d and am now on 20 mg/d. Additionally I inhale > Budenosid, > > an equivalent substance to Pred. It should work directly in the airways. > Has > > anybody experience with substituting pred by inhaled corticoids? > > > > So far, I do quite well. RP started in my case in Oct. 99 and was > diagnosed > > in May 2000 after a rigid bronchoskopy. This bronchoscopy made me living > for > > two weeks on a breathing machine. That is why I also have a tracheotomy, > but > > fortunately no longer a tube. A small whole in the trachea remained. > > > > Many greetings > > Werner > > > > > > DISCLAIMER!! > > WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS > RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR > BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR > PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND > TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 2002 Report Share Posted February 1, 2002 My surgery has now been postponed until the 3rd week of February. I will contact the group as soon as I get out of the hospital. Ute Re: Question on steroids Ute and Werner, Sounds like we belong to the same club. Due to the permanent damage RP has caused to my trach and bronch (about 80%), a Y stent has been manufactured for me and sits at the Mayo Clinic in Rochester, MN for when I absolutely need it. Mayo seems to be very conservative about stents. I have responded well to the C-PAP machine and the Cytoxan I take orally each day seems to be effective. I'm still working on reducing the Prednisone, but also use Serevent disk twice a day and just started using Atrovent. But no steroid inhalers. During my pulmonary function tests, we've tried Albuterol before and after the tests with no difference. Please let me know how you do with your stent. I don't think I'm that far off myself. There is another person in this group who has a stent and is very happy with it. Her name is Harvey at Ronnielyn27@.... I'll be praying for you and hoping for a great outcome. Please keep me posted when you are able. Thanks, at katdavis@... Question on steroids > > > > Hi all, > > > > this is Werner from Germany. My problem with RP is " only " a problem with > > breathing. RP damaged trachea and bronchi. For two years I take pred, > > starting with 50 mg/d and am now on 20 mg/d. Additionally I inhale > Budenosid, > > an equivalent substance to Pred. It should work directly in the airways. > Has > > anybody experience with substituting pred by inhaled corticoids? > > > > So far, I do quite well. RP started in my case in Oct. 99 and was > diagnosed > > in May 2000 after a rigid bronchoskopy. This bronchoscopy made me living > for > > two weeks on a breathing machine. That is why I also have a tracheotomy, > but > > fortunately no longer a tube. A small whole in the trachea remained. > > > > Many greetings > > Werner > > > > > > DISCLAIMER!! > > WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS > RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR > BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR > PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND > TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU > > > > Quote Link to comment Share on other sites More sharing options...
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