Guest guest Posted January 18, 2008 Report Share Posted January 18, 2008 Hello everyone, I sent an email a few days ago 37yr old wife and mother of a 16yr old daughter and 12 yr old son. Diagnosed with mixed connective tissue disease, vasculitis and raynauds in 2005, and pulmonary fibrosis in 2006. This has been a major rollercoaster for me (which I'm sure you all can relate). My question is: how do you all deal with the nose soreness from the oxygen tubing? this may sound minor, but it drives me crazy. Currently I'm on 3.5 to 4 liters of oxygen, I nebulize twice daily, 50mg of prednisone, and I use combivent twice daily. Question: I've had issues with finding a Rhumetologist who can handle the multitude of issues I have. Prednisone seems to be the answer to everything. What's an alternative to steroids? Question: have any of you found cough syrup containing codeine effective ? my chest is killing me from the coughing Any advise will be appreciated, Deon Lithonia, Ga Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2008 Report Share Posted January 18, 2008 Hi Deon! Sorry you have the same issues that we all have. I don't know about soreness from the oxygen tubing, but I want to tell you about cough medicine. The best prescription cough medicine has hydrocodone in it, I just got a new prescription of one. I desperately need it. The cough is embarrassing to me. It sounds worse to everyone but me. I am just glad to expectorate. (RELIEF!) Take care. I want to chat more with you, O.K.? Toodles! Jane UIP/IPF 12/1998 Dalton, Georgia aka pianolady_musicgirl>> Hello everyone,> I sent an email a few days ago 37yr old wife and mother of a 16yr old daughter and 12 yr old son. Diagnosed with mixed connective tissue disease, vasculitis and raynauds in 2005, and pulmonary fibrosis in 2006. This has been a major rollercoaster for me (which I'm sure you all can relate).> > My question is: how do you all deal with the nose soreness from the oxygen tubing? this may sound minor, but it drives me crazy.> > Currently I'm on 3.5 to 4 liters of oxygen, I nebulize twice daily, 50mg of prednisone, and I use combivent twice daily. > > Question: I've had issues with finding a Rhumetologist who can handle the multitude of issues I have. Prednisone seems to be the answer to everything. What's an alternative to steroids?> > Question: have any of you found cough syrup containing codeine effective ? my chest is killing me from the coughing> > Any advise will be appreciated,> Deon> Lithonia, Ga> > > ---------------------------------> Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now.> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2008 Report Share Posted January 18, 2008 Deon, I just had another thought. Do you go to Emory Clinic to the pulmonary doctors there? If you do, I am sure they could find all the specialists that you need. There is a support group meeting next Thursday from 11:30 to 1:00 for those of us who have pulmonary fibrosis. Lunch will be served too. Hope you can come. Oh, I am on oxygen, too. Toodles! Jane UIP/IPF 12/1998 Dalton, Georgia aka pianolady_musicgirl>> Hello everyone,> I sent an email a few days ago 37yr old wife and mother of a 16yr old daughter and 12 yr old son. Diagnosed with mixed connective tissue disease, vasculitis and raynauds in 2005, and pulmonary fibrosis in 2006. This has been a major rollercoaster for me (which I'm sure you all can relate).> > My question is: how do you all deal with the nose soreness from the oxygen tubing? this may sound minor, but it drives me crazy.> > Currently I'm on 3.5 to 4 liters of oxygen, I nebulize twice daily, 50mg of prednisone, and I use combivent twice daily. > > Question: I've had issues with finding a Rhumetologist who can handle the multitude of issues I have. Prednisone seems to be the answer to everything. What's an alternative to steroids?> > Question: have any of you found cough syrup containing codeine effective ? my chest is killing me from the coughing> > Any advise will be appreciated,> Deon> Lithonia, Ga> > > ---------------------------------> Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now.> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2008 Report Share Posted January 18, 2008 Hi Jane, Sorry I'm responding so late. My pulmonologist is at Emory Crawford Long (Dr. Leeper). He is great, however I haven't been as successful with the group of Emory Rhuemtologist. Thanks for the info on the meeting next Thursday. I will try my best to make it there.Jane wrote: Deon, I just had another thought. Do you go to Emory Clinic to the pulmonary doctors there? If you do, I am sure they could find all the specialists that you need. There is a support group meeting next Thursday from 11:30 to 1:00 for those of us who have pulmonary fibrosis. Lunch will be served too. Hope you can come. Oh, I am on oxygen, too. Toodles! Jane UIP/IPF 12/1998 Dalton, Georgia aka pianolady_musicgirl>> Hello everyone,> I sent an email a few days ago 37yr old wife and mother of a 16yr old daughter and 12 yr old son. Diagnosed with mixed connective tissue disease, vasculitis and raynauds in 2005, and pulmonary fibrosis in 2006. This has been a major rollercoaster for me (which I'm sure you all can relate).> > My question is: how do you all deal with the nose soreness from the oxygen tubing? this may sound minor, but it drives me crazy.> > Currently I'm on 3.5 to 4 liters of oxygen, I nebulize twice daily, 50mg of prednisone, and I use combivent twice daily. > > Question: I've had issues with finding a Rhumetologist who can handle the multitude of issues I have. Prednisone seems to be the answer to everything. What's an alternative to steroids?> > Question: have any of you found cough syrup containing codeine effective ? my chest is killing me from the coughing> > Any advise will be appreciated,> Deon> Lithonia, Ga> > > ---------------------------------> Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now.> Looking for last minute shopping deals? Find them fast with Yahoo! Search. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2008 Report Share Posted January 18, 2008 Deon I used to take 1800 mg of NAC (N-Acetyl Cysteine) a day and didn,t realize how much it was helping with the cough until I had to come off to go on the Pirfenidone drug trial. Now I have had to resort to Percocet. As much as I don't like taking it it is the only thing that will control my cough even somewhat. I take half of a 325mg tablet 5 or 6 times a day. Jon IPF 05/06 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2008 Report Share Posted January 18, 2008 Ok.....I just don't get it sometimes. Percocet five or six times daily is fine and NAC isn't. I understand the logic, just think it flies in the face of common sense. But, of course I feel that way about blind studies so i'm a bit prejudiced I guess. We have more than enough history on the placebo effect not to need control groups. > > Deon > > I used to take 1800 mg of NAC (N-Acetyl Cysteine) a day and didn,t > realize how much it was helping with the cough until I had to come off > to go on the Pirfenidone drug trial. Now I have had to resort to > Percocet. As much as I don't like taking it it is the only thing that > will control my cough even somewhat. I take half of a 325mg tablet 5 > or 6 times a day. > > Jon IPF 05/06 > Quote Link to comment Share on other sites More sharing options...
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