Guest guest Posted April 18, 2007 Report Share Posted April 18, 2007 Beth...The Docs said that the fibrosis was different than PF but it was still fibrosis!!!!Thank G-d the prednisone has kept me stable...even though I hate the stuff...it does what they said it might do...at least for you and me!!! Z fibriotic NSIP/o5/PA Potter, reader,carousel lover and MomMom to Darah *“I’m gonna be iron like a lion in Zion” Bob Marley* Beth wrote: > , > I just had to tell you I love the description * " the great/horrible > prednisone " *. That's it in a nutshell. > > I was told that NSIP has a specific pattern that can be seen on a > HRCT. It amazes me the different answers we get from our doctors.... > I wish they would all talk and come up with some consistent answers. > Wouldn't that be nice? I'll keep dreaming...LOL > > */ > */Beth in NY Fibrotic NSIP 06/06/* > *//* > */Don't try to explain it, just nod your head./* > */Breathe in, breathe out. Move on. J. Buffett/* > /* > > > Re: reaching out > > Donna, They are diagnosing you without a biopsy? My pulmonologist > insisted that the only way to be sure that hte fibrosis wasn't the > standard PF was the OLB. I consented and had few porblems with > recovery but it was surgery!!!! My dx was NSIP....Non specifc (they > don't know the cause) Interstitial Pnemonitis.I have been on the > great/horrible Prednisone 40mg to start) since August of 2005...now > down to 15mg. It has keep the fibrosis from progressing, at the same > time I have had very severe side effects ( almost all on the list) and > take more med to mitigate the side effects!!!! I do feel less > horrible than in 2005, not back to me yet and I don't really expect to > ever be there. However, things are getting less bad with the lower > dosage of Prednisone and the Docs hope i can stay stable at 10mg...me too. > > There are many side effects beside the sleeplessness and weight > gain...15 should not cause that too much....just stay as active as you > can. The website..._ask.com_ has many links to Prednisone side > effects that are helpful. The website for this group is fantastic for > information as are the links to individual web pages from members. > > I used to be Community College Developmental Reading instructor and > also taught ESL to college level students and Elementary Education > courses too.I had to retire...talking is the most difficult for me. > I'm O2 dependent almost 24/7 . > > I hope you are seeing a pulmonologist at a teaching hospital...they > have the most information available on lung diseases in general and > are more likely to know about PF. Good luck and keep reading and > posting. We help each other. > > > Z fibriotic NSIP/o5/PA > > > Potter, reader,carousel lover and MomMom to Darah > > *“I’m gonna be iron like a lion in Zion” Bob Marley* > > > > donna siegmann wrote: > >> >> Hello Everyone.... particularly those who have >> responded to my " reaching out " email.. >> >> I am so blown away by what Warriors you all are! >> Someone asked me what the people were like on the >> site. I could only say despite the incredible >> suffering some people are experiencing, there is an >> amazing positve energy. I ahave to admit I am getting >> a bit confused as to how to remember and keep up with >> the posts. >> Ginger and Vicky sure sound so brave.... >> >> I work on a college campus in the counseling center. >> As you can imagine given the news this week there has >> been much focus on the unpredicatability of >> life...even when you have your health... >> The underlying feeling of each day being a gift and >> one never really knows when we get up everyday what >> the day will bring. >> Since my dx, it has increased my mindfulness by leaps >> and bounds. I " thought' I had a deep spiritual >> practice. It seems this illness has been yet another >> teacher for me. i have finally developed a meditation >> paractice after many starts and stops... >> >> My MD called me yesterday to say although they had not >> had the case conference yet, they had reviewed my CT >> scans closely. THe radiologist and the MD felt this >> was a " inhalation pneumonits " responding to >> prednisone. He srtongly encouraged me to increase my >> prednisone ( I was at 10..I have gone to 15 ). He said >> he did not want to be having a conversation with me in >> a year when the fibrosis had increased ( irreversible) >> regretting not being more aggressive with the >> prednisone now. >> >> My question is, how high do I need to go? How is that >> determined? >> It really counteracts what the natural response of our >> bodies immune system does. Does anyone use herbs and >> remedies for anti inflammation. My biggest complaint >> with Prednisone was the problems with sleep..... and >> of course the weight gain... >> >> I love the quote I have seen.. >> sorry looks around >> regret looks back >> faith looks up.. >> >> thank you everyone >> ps >> Wilma >> screw the public transportation. .blow the $$ on >> convenience! >> >> ____________ _________ _________ _________ _________ __ >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 18, 2007 Report Share Posted April 18, 2007 Beth, Re: It amazes me the different answers we get from our doctors.... I wish they would all talk and come up with some consistent answers Over the course of this illness, I have seen 7 pulmonary docs (early days when I was getting wrong diagnosis, consults, insurance changes, emergency hospital visits, tx evaluation and the wonderful doc that has actually worked like a dog to keep me alive. None of them have agreed fully on treatment plans. Even when you read info from prestigious physicians from top rated lung centers, there is no agreement. There is a wide variety of treatment among those of us on this board. If the professionals are that confused....as to diagnosis and treatment....it is no wonder we all have so many questions. May the Force be with us!!!!!!!!! Hugs, Joyce D. PULMONARY FIBROSIS/LUPUS 1997 BRONCHIECTASIS 2004 INDIANA > > Hello Everyone.... particularly those who have> responded to my "reaching out" email..> > I am so blown away by what Warriors you all are!> Someone asked me what the people were like on the> site. I could only say despite the incredible> suffering some people are experiencing, there is an> amazing positve energy. I ahave to admit I am getting> a bit confused as to how to remember and keep up with> the posts.> Ginger and Vicky sure sound so brave....> > I work on a college campus in the counseling center.> As you can imagine given the news this week there has> been much focus on the unpredicatability of> life...even when you have your health...> The underlying feeling of each day being a gift and> one never really knows when we get up everyday what> the day will bring.> Since my dx, it has increased my mindfulness by leaps> and bounds. I "thought' I had a deep spiritual> practice. It seems this illness has been yet another> teacher for me. i have finally developed a meditation> paractice after many starts and stops...> > My MD called me yesterday to say although they had not> had the case conference yet, they had reviewed my CT> scans closely. THe radiologist and the MD felt this> was a "inhalation pneumonits" responding to> prednisone. He srtongly encouraged me to increase my> prednisone ( I was at 10..I have gone to 15 ). He said> he did not want to be having a conversation with me in> a year when the fibrosis had increased ( irreversible)> regretting not being more aggressive with the> prednisone now.> > My question is, how high do I need to go? How is that> determined?> It really counteracts what the natural response of our> bodies immune system does. Does anyone use herbs and> remedies for anti inflammation. My biggest complaint> with Prednisone was the problems with sleep..... and> of course the weight gain...> > I love the quote I have seen..> sorry looks around> regret looks back> faith looks up..> > thank you everyone> ps> Wilma> screw the public transportation. .blow the $$ on> convenience! > > ____________ _________ _________ _________ _________ __> Quote Link to comment Share on other sites More sharing options...
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