Guest guest Posted August 22, 2008 Report Share Posted August 22, 2008 Diane, I have NSIP, a form of PF that responds favorably to Prednisone. This drug have kept me stable since September of 2005 along with Imuran and many others. Even as the dosage diminished I kept stable but the pulmonologist wants me at 10mg to keep any more inflammation from reoccurring to keep the fibrosis stopped where it is now. So, I will not be going any lower and will permanently be at 10mg. I'm not thrilled but hey, STABLE is a great place to be. Z fibriotic NSIP/05 Z 64, fibriotic NSIP/o5/PA And “mild” PH/10/07 and Reynaud’s too!! No, NSIP was not self-inflicted…I never smoked! Potter, reader,carousel lover and MomMom to Darah and Sara “I’m gonna be iron like a lion in Zion” Bob Marley Vinca Minor-periwinkle is my flower Diane wrote: : I am curious as to why you stay on the 10 mg. so long. Is your goal to get off all together or does this amount keep you stable? I am down to 15 and will go down to 10 next Thursday but my goal is to stop all prednisone. Diane IPF June 07 New Brunswick, Canada ----- Original Message ---- From: Zion <ljz741 (AT) verizon (DOT) net> To: Breathe-Support Sent: Friday, August 22, 2008 8:57:07 PM Subject: Re: Amy Dawn Amy, I've been on 10 mg for about 5 months now...down from 40 mg begun in 2005. I do not have the cognitive problems as severly as I had before. I can do most of the things you say are trouble for you. Are you on o2? Many of your problems can be because of a lack of O2 as well. I'm on 3 lpm all the time ( I used 4 lpm today because I babysat my 6 MONTH OLD GRAND DAUGHTER SARA ALL DAY. I used word jumbles and word search puzzles to help get my concentration back as I was lessening the Prednisone. I started with one puzzle...moved up to 2 etc. I also read simpler books...the beach-novels( Nora , Higgens , ) They are easy to follow and I started with short periods of time and increased over weeks. As a Reading Specialist, the idea of me not reading was painful ! I was determined not to lose that skill. Z 64, fibriotic NSIP/o5/PA And “mild” PH/10/07 and Reynaud’s too!! No, NSIP was not self-inflicted…I never smoked! Potter, reader,carousel lover and MomMom to Darah and Sara “I’m gonna be iron like a lion in Zion” Bob Marley Vinca Minor-periwinkle is my flower Amy Dawn wrote: Is anyone on just 10 mg of prednisone? I have been on 10 for a long time. I would love to get off , they keep telling me my breathing would get worse. Also sometimes I feel like I have lost half of my brain cells. I can't remember, forgetful cannot remember how to do things. Programs on the computer I could do without thinking now I cannot remember can't concentrate. I am told it is because I don't excercise my brain, I use to read a lot now I cannot finish a book no a chapter. I hardlyl ever get to leave the house. I getted winded just walking to the door. Oh yeah once you are this bad your friends disapear, they all say "if there is anything we can do anything just call" I probably sound like a big complaining cry baby. I am really not like that it is just I know how long and late stage I am and what I use to do and what I do now. I know everyone is probably feeling this way too so help me about the concentrating. Amy No virus found in this incoming message. Checked by AVG - http://www.avg. com Version: 8.0.138 / Virus Database: 270.6.6/1627 - Release Date: 8/22/2008 6:48 AM Looking for the perfect gift? Give the gift of Flickr! No virus found in this incoming message. Checked by AVG - http://www.avg.com Version: 8.0.138 / Virus Database: 270.6.6/1627 - Release Date: 8/22/2008 6:48 AM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 22, 2008 Report Share Posted August 22, 2008 Amy Dawn, You are quite welcome. I'm glad you're on the O2 and make sure you keep the level where you get the most benefit. Z fibriotic NSIP/05 Z 64, fibriotic NSIP/o5/PA And “mild” PH/10/07 and Reynaud’s too!! No, NSIP was not self-inflicted…I never smoked! Potter, reader,carousel lover and MomMom to Darah and Sara “I’m gonna be iron like a lion in Zion” Bob Marley Vinca Minor-periwinkle is my flower Amy Dawn wrote: Hi : I noticed I did not put a subject I am bad about that sorry. Yes I am on O2 cannot be withour it except for the other day when it came off the bottle and I did not know for about 15 mins and began feeling faint. Thanks for the heads up on the reading even if I do a page or two at a time until I get on track and will try the word jumbles. Thanks Amy ----- Original Message ---- From: Zion <ljz741 (AT) verizon (DOT) net> To: Breathe-Support Sent: Friday, August 22, 2008 7:57:07 PM Subject: Re: Amy Dawn Amy, I've been on 10 mg for about 5 months now...down from 40 mg begun in 2005. I do not have the cognitive problems as severly as I had before. I can do most of the things you say are trouble for you. Are you on o2? Many of your problems can be because of a lack of O2 as well. I'm on 3 lpm all the time ( I used 4 lpm today because I babysat my 6 MONTH OLD GRAND DAUGHTER SARA ALL DAY. I used word jumbles and word search puzzles to help get my concentration back as I was lessening the Prednisone. I started with one puzzle....moved up to 2 etc. I also read simpler books...the beach-novels( Nora , Higgens , ) They are easy to follow and I started with short periods of time and increased over weeks. As a Reading Specialist, the idea of me not reading was painful ! I was determined not to lose that skill. Z 64, fibriotic NSIP/o5/PA And “mild” PH/10/07 and Reynaud’s too!! No, NSIP was not self-inflicted…I never smoked! Potter, reader,carousel lover and MomMom to Darah and Sara “I’m gonna be iron like a lion in Zion” Bob Marley Vinca Minor-periwinkle is my flower Amy Dawn wrote: Is anyone on just 10 mg of prednisone? I have been on 10 for a long time. I would love to get off , they keep telling me my breathing would get worse. Also sometimes I feel like I have lost half of my brain cells. I can't remember, forgetful cannot remember how to do things. Programs on the computer I could do without thinking now I cannot remember can't concentrate. I am told it is because I don't excercise my brain, I use to read a lot now I cannot finish a book no a chapter. I hardlyl ever get to leave the house. I getted winded just walking to the door. Oh yeah once you are this bad your friends disapear, they all say "if there is anything we can do anything just call" I probably sound like a big complaining cry baby. I am really not like that it is just I know how long and late stage I am and what I use to do and what I do now. I know everyone is probably feeling this way too so help me about the concentrating. Amy No virus found in this incoming message. Checked by AVG - http://www.avg. com Version: 8.0.138 / Virus Database: 270.6.6/1627 - Release Date: 8/22/2008 6:48 AM No virus found in this incoming message. Checked by AVG - http://www.avg.com Version: 8.0.138 / Virus Database: 270.6.6/1627 - Release Date: 8/22/2008 6:48 AM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 23, 2008 Report Share Posted August 23, 2008 Thanks for the explanation, . If I had stopped to think for a minute, I would have remembered that you had NSIP. The prednisone has had no benefit for me except for the first 2 weeks. I had a major improvement and then went back to where I was at the start. No explanation for the temporary improvement and it has been pretty much a downward slope from there. I will be very happy to get rid of it. Have a great day! Diane IPF June 07New Brunswick, Canada Re: Amy Dawn Amy, I've been on 10 mg for about 5 months now...down from 40 mg begun in 2005.I do not have the cognitive problems as severly as I had before. I can do most of the things you say are trouble for you.Are you on o2? Many of your problems can be because of a lack of O2 as well.I'm on 3 lpm all the time ( I used 4 lpm today because I babysat my 6 MONTH OLD GRAND DAUGHTERSARA ALL DAY. I used word jumbles and word search puzzles to help get my concentration back as I was lessening the Prednisone.I started with one puzzle...moved up to 2 etc.I also read simpler books...the beach-novels( Nora , Higgens , )They are easy to follow and I started with short periods of time and increased over weeks.As a Reading Specialist, the idea of me not reading was painful ! I was determined not to lose that skill. Z 64, fibriotic NSIP/o5/PA And “mild” PH/10/07 and Reynaud’s too!! No, NSIP was not self-inflicted… I never smoked! Potter, reader,carousel lover and MomMom to Darah and Sara “I’m gonna be iron like a lion in Zion” Bob Marley Vinca Minor-periwinkle is my flower Amy Dawn wrote: Is anyone on just 10 mg of prednisone? I have been on 10 for a long time. I would love to get off , they keep telling me my breathing would get worse. Also sometimes I feel like I have lost half of my brain cells. I can't remember, forgetful cannot remember how to do things. Programs on the computer I could do without thinking now I cannot remember can't concentrate. I am told it is because I don't excercise my brain, I use to read a lot now I cannot finish a book no a chapter. I hardlyl ever get to leave the house. I getted winded just walking to the door. Oh yeah once you are this bad your friends disapear, they all say "if there is anything we can do anything just call" I probably sound like a big complaining cry baby. I am really not like that it is just I know how long and late stage I am and what I use to do and what I do now. I know everyone is probably feeling this way too so help me about the concentrating. Amy No virus found in this incoming message. Checked by AVG - http://www.avg. com Version: 8.0.138 / Virus Database: 270.6.6/1627 - Release Date: 8/22/2008 6:48 AM Looking for the perfect gift? Give the gift of Flickr! No virus found in this incoming message. Checked by AVG - http://www.avg. com Version: 8.0.138 / Virus Database: 270.6.6/1627 - Release Date: 8/22/2008 6:48 AM Now with a new friend-happy design! Try the new Yahoo! Canada Messenger Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 23, 2008 Report Share Posted August 23, 2008 Amy Dawn: I agree with what you are saying but I made the decision to stop prednisone and Imuran because I felt it was interfering with my quality of life on a day to day basis. I can't be 100% sure that these drugs were a benefit or not but I think not. I got tired of the jitters and the massive amounts of fluid that I was lucky enough to acquire in the process. I would rather turn up the O2 a notch and be out and about. We are all different and we must do what we think is good for ourselves. Take care and have a great day. Diane IPF June 07New Brunswick, Canada Re: Amy Dawn Amy, I've been on 10 mg for about 5 months now...down from 40 mg begun in 2005.I do not have the cognitive problems as severly as I had before. I can do most of the things you say are trouble for you.Are you on o2? Many of your problems can be because of a lack of O2 as well.I'm on 3 lpm all the time ( I used 4 lpm today because I babysat my 6 MONTH OLD GRAND DAUGHTERSARA ALL DAY. I used word jumbles and word search puzzles to help get my concentration back as I was lessening the Prednisone.I started with one puzzle...moved up to 2 etc.I also read simpler books...the beach-novels( Nora , Higgens , )They are easy to follow and I started with short periods of time and increased over weeks.As a Reading Specialist, the idea of me not reading was painful ! I was determined not to lose that skill. Z 64, fibriotic NSIP/o5/PA And “mild” PH/10/07 and Reynaud’s too!! No, NSIP was not self-inflicted… I never smoked! Potter, reader,carousel lover and MomMom to Darah and Sara “I’m gonna be iron like a lion in Zion” Bob Marley Vinca Minor-periwinkle is my flower Amy Dawn wrote: Is anyone on just 10 mg of prednisone? I have been on 10 for a long time. I would love to get off , they keep telling me my breathing would get worse. Also sometimes I feel like I have lost half of my brain cells. I can't remember, forgetful cannot remember how to do things. Programs on the computer I could do without thinking now I cannot remember can't concentrate. I am told it is because I don't excercise my brain, I use to read a lot now I cannot finish a book no a chapter. I hardlyl ever get to leave the house. I getted winded just walking to the door. Oh yeah once you are this bad your friends disapear, they all say "if there is anything we can do anything just call" I probably sound like a big complaining cry baby. I am really not like that it is just I know how long and late stage I am and what I use to do and what I do now. I know everyone is probably feeling this way too so help me about the concentrating. Amy No virus found in this incoming message. Checked by AVG - http://www.avg. com Version: 8.0.138 / Virus Database: 270.6.6/1627 - Release Date: 8/22/2008 6:48 AM Looking for the perfect gift? Give the gift of Flickr! Yahoo! Canada Toolbar : Search from anywhere on the web and bookmark your favourite sites. Download it now! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 24, 2008 Report Share Posted August 24, 2008 Amy, I didn't say where I found the puzzles. Right there at the bottom of the comics page of our local ( Phuiladelphia) paper were these word search and word jumbles that had probably been there for years!!! I became aware of them as my husband Mike was attempting to teach me Sudoko puzzles!( They were at the bottom of the page of comics) I can't do those at all...I'm not logical enough..too artsy! Anyway there the word puzzles waiting for me to find them! I did one each day for a while, then I realized that I could do two, etc. I finally went to a book store that has magazine puzzle books and found word search and jumble books. ( I also found them on Amazon) I really feel that doing these puzzles helped me to regain my concentration ability...not as good as before , but good-enough that I'm no longer frustrated. I can now follow instructions for knitting and crochet ( I couldn't do that earlier in the Prednisone fog) and I have finished several sweaters for both of my baby grand daughters. That part of ME has returned. I think that that's what coping with any disease is all about. You have to find out what makes you feel like you and work at getting it back to some degree. I can't teach anymore, won't be giving talks on books anytime soon and can't run around as in my previous life. BUT...I'm ME as often as I can be. This positive message is due in part to the fact that I had my 6 month old grand daughter here all day Friday. Just the two of us! From 7:30am until 4:30pm!!!Many diaper changes, outfit changes and even a load of wash! But so much FUN! What a wonderful day!!!!Exhausting but good exhausting and I'm still floating because of the time I had with her to myself. Have a great Sunday. Z fibriotic NSIP/05 Z 64, fibriotic NSIP/o5/PA And “mild” PH/10/07 and Reynaud’s too!! No, NSIP was not self-inflicted…I never smoked! Potter, reader,carousel lover and MomMom to Darah and Sara “I’m gonna be iron like a lion in Zion” Bob Marley Vinca Minor-periwinkle is my flower Amy Dawn wrote: Hi : I noticed I did not put a subject I am bad about that sorry. Yes I am on O2 cannot be withour it except for the other day when it came off the bottle and I did not know for about 15 mins and began feeling faint. Thanks for the heads up on the reading even if I do a page or two at a time until I get on track and will try the word jumbles. Thanks Amy ----- Original Message ---- From: Zion <ljz741 (AT) verizon (DOT) net> To: Breathe-Support Sent: Friday, August 22, 2008 7:57:07 PM Subject: Re: Amy Dawn Amy, I've been on 10 mg for about 5 months now...down from 40 mg begun in 2005. I do not have the cognitive problems as severly as I had before. I can do most of the things you say are trouble for you. Are you on o2? Many of your problems can be because of a lack of O2 as well. I'm on 3 lpm all the time ( I used 4 lpm today because I babysat my 6 MONTH OLD GRAND DAUGHTER SARA ALL DAY. I used word jumbles and word search puzzles to help get my concentration back as I was lessening the Prednisone. I started with one puzzle....moved up to 2 etc. I also read simpler books...the beach-novels( Nora , Higgens , ) They are easy to follow and I started with short periods of time and increased over weeks. As a Reading Specialist, the idea of me not reading was painful ! I was determined not to lose that skill. Z 64, fibriotic NSIP/o5/PA And “mild” PH/10/07 and Reynaud’s too!! No, NSIP was not self-inflicted…I never smoked! Potter, reader,carousel lover and MomMom to Darah and Sara “I’m gonna be iron like a lion in Zion” Bob Marley Vinca Minor-periwinkle is my flower Amy Dawn wrote: Is anyone on just 10 mg of prednisone? I have been on 10 for a long time. I would love to get off , they keep telling me my breathing would get worse. Also sometimes I feel like I have lost half of my brain cells. I can't remember, forgetful cannot remember how to do things. Programs on the computer I could do without thinking now I cannot remember can't concentrate. I am told it is because I don't excercise my brain, I use to read a lot now I cannot finish a book no a chapter. I hardlyl ever get to leave the house. I getted winded just walking to the door. Oh yeah once you are this bad your friends disapear, they all say "if there is anything we can do anything just call" I probably sound like a big complaining cry baby. I am really not like that it is just I know how long and late stage I am and what I use to do and what I do now. I know everyone is probably feeling this way too so help me about the concentrating. Amy No virus found in this incoming message. Checked by AVG - http://www.avg. com Version: 8.0.138 / Virus Database: 270.6.6/1627 - Release Date: 8/22/2008 6:48 AM No virus found in this incoming message. Checked by AVG - http://www.avg.com Version: 8.0.138 / Virus Database: 270.6.6/1627 - Release Date: 8/22/2008 6:48 AM Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.