Guest guest Posted August 23, 2006 Report Share Posted August 23, 2006 Peggy, I have never done hard drugs and am wondering about your wild past! (lol) Seriously though, my doctor is dropping me slowly, 5 mg at a time every two weeks. Getting from 40 to 15 wasn't too bad, but dropping from 15 to 10 has been a lot harder. I had heard that coming off of the 10 and below is the hardest and am hoping it isn't true. The best part about today is I finally figured out how to insert these cool little faces and now I want to learn how to insert cool graphics like Ginger. That and my own BOA will make my life complete! God Bless You-Peggy wrote: , I'm glad your down to 10mg. of prednisone.. I do not know what your Dr. is thinking..I guarantee the symptoms you have ARE prednisone. I hope you have decreased slowly. even then coming off is same as coming of hard drugs. I wish you could read the book everyone has been talking about. I have not read the book BUT I lived it. God Bless you... Much Love and Prayers, Peggy 9/04 ipf > Peggy, > I would think I was crazy if I didn't have this support group. My breathing > is better on pred and the doctor thinks all the strange effects are in my > head. I was hoping I would be totally off of it in a few months, but > realistically I think it is going to take me awhile. And, you were right-the > strange purple marks were bruises. I have no clue what I leaned against but > I had lots of dark purple spots. They are now fading to yellow. Before you > told me what they were I thought I had some type of measle melanomas! God > bless you- > > Peggy <pac1773cfl (DOT) rr.com> wrote: > Hi , Boy do I ever get what your saying.. That's me on pred. My Dr. > looked at me funny when I told her It just was NOT worth going through the > prednisone side effects for me. So I started down but It took a year to get > completely off. Then months of the effects so your not quite finished yet. > I will be praying for you. I hope you are on an anti-depressant it helps you > keep hope alive..cause you are more like yourself without the drug. > God Bless you... Much Love and Prayers, Peggy 9/04 ipf > >> Hi Gordon, >> I know it is a wonder drug for so many-unfortunately for me the side effects >> have been horrible. I have never been able to drink ( 1 glass of wine and I >> am ready to dance on tables, 2 and I pass out) or take pain medication. It >> seems to effect me 10 times harder than the average person. I am wondering >> if this is the same for people who have bad effects from the steroids-if the >> ones who can tolerate pain medication and alcohol also don't have the >> horrible side effects from the steroids. On the steroids I am so shaky I >> can't sign my name, my eyes are so blurry I can't read or drive and I feel >> drugged all the time. My brain is foggy and all I want to do is sleep ( on >> the average 12 to 14 hours a day). I can handle the weight gain and >> puffiness, but feeling like I am a 90 year old invalid overnight has been >> hard. I am down to 10 my starting today and I can at least read a little, >> not so shaky and feel alive again. So far my breathing isn't too bad >> and I am only coughing a little. I guess its like chemo-for some people it >> kills ths cancer and for others it just kills them quicker. Anyway- I am >> anxiously awaiting the day I am totally off them ( and am hoping you post >> more bikini pictures in the meantime to keep me amused!) >> >> >> debra beck <mydeb54wowway> wrote: >> ; >> I have two brothers with sarcoidosis. Trust me the benefits of prednisone >> far out weigh the side effects. It will give you a better longer life. >> Gordon ipf/uip 12/03 >> Re: new member >> >> >> Hi Jan ( I am hoping this is your name!), >> I too just turned 50 in January and two months later found out I have >> advanced pulmonary fibrosis and sarcoidosis. I had planned to go to >> Hawaii this year with my best friend and instead have spent the past >> months in doctor's offices and hospitals trying to get the disease under >> control. It is definately a shock when you first find out. This group >> has >> been such a blessing for me and I know it will be for you also. It is >> wonderful to get the support, friendship and information so desperately >> needed as you fight this disease. I am so glad you don't need >> steroids-for a lot of us the side effects have out weighed the benefits. >> Anyway-welcome to our group- Sarcoid/PF 3/06 >> >> janquart01 <janquart01> wrote: >> Hi, >> I'm new to this group. A little nervous about it too. I was diagnosed >> with UIP/IPF a few months ago. I've known for about 7 years that I've >> had fibrosis in my lungs. But it wasn't until I had a SECOND biopsy >> that I found out that I had IPF. It kind of blew me away when I was >> told that I'd eventually require a lung transplant. I just turned 50 >> so that was pretty scary. I've been through the evaluation process, >> but am currently too healthy to list for transplant. I was VERY happy >> when they told me that! I currently take Advair and recently started >> taking NAC. I'm not on any steroids and don't want to be. I'm keeping >> a positive attitude and moving on with my life. But, I'm also trying >> to learn as much as I can so I know what to expect. I know that a >> transplant is a big IF not WHEN. So, I want to prepare myself for the >> loss of lung function that I know will happen. I'd really like to be a >> part of this group because I think we can all help each other cope. >> Thanks for listening! >> >> >> >> >> >> >> --------------------------------- >> Do you Yahoo!? >> Everyone is raving about the all-new Yahoo! Mail. >> >> >> >> >> >> >> --------------------------------- >> Do you Yahoo!? >> Everyone is raving about the all-new Yahoo! Mail. >> > > > > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 24, 2006 Report Share Posted August 24, 2006 Ref enlivening tubing/cannulas. Look in Ye Olde J.C. Whitney Automotive catalog. They have HOSE COVERINGS. Ck the sizes, look for the colors/material you want (including fittings ... which I'm sure WON'T work) and go from there! Phred The Craftmaster ---- Original Message ---- From: dnsrndl@... To: Breathe-Support Subject: Re: Re: R Date: Wed, 23 Aug 2006 18:34:59 -0700 (PDT) >Peggy, > I have never done hard drugs and am wondering about your wild >past! (lol) Seriously though, my doctor is dropping me slowly, 5 mg >at a time every two weeks. Getting from 40 to 15 wasn't too bad, >but dropping from 15 to 10 has been a lot harder. I had heard that >coming off of the 10 and below is the hardest and am hoping it isn't >true. The best part about today is I finally figured out how to >insert these cool little faces and now I want to learn how to >insert cool graphics like Ginger. That and my own BOA will make my >life complete! God Bless You- > >Peggy wrote: > , I'm glad your down to 10mg. of prednisone.. I do >not know what your > Dr. is thinking..I guarantee the symptoms you have ARE prednisone. >I hope > you have decreased slowly. even then coming off is same as coming >of hard > drugs. I wish you could read the book everyone has been talking >about. I > have not read the book BUT I lived it. God Bless you... > Much Love and Prayers, Peggy 9/04 ipf > > > Peggy, > > I would think I was crazy if I didn't have this support group. >My breathing > > is better on pred and the doctor thinks all the strange effects >are in my > > head. I was hoping I would be totally off of it in a few >months, but > > realistically I think it is going to take me awhile. And, you >were right-the > > strange purple marks were bruises. I have no clue what I leaned >against but > > I had lots of dark purple spots. They are now fading to >yellow. Before you > > told me what they were I thought I had some type of measle >melanomas! God > > bless you- > > > > Peggy wrote: > > Hi , Boy do I ever get what your saying.. That's me on >pred. My Dr. > > looked at me funny when I told her It just was NOT worth going >through the > > prednisone side effects for me. So I started down but It took a >year to get > > completely off. Then months of the effects so your not quite >finished yet. > > I will be praying for you. I hope you are on an anti-depressant >it helps you > > keep hope alive..cause you are more like yourself without the >drug. > > God Bless you... Much Love and Prayers, Peggy 9/04 ipf > > > >> Hi Gordon, > >> I know it is a wonder drug for so many-unfortunately for me the >side effects > >> have been horrible. I have never been able to drink ( 1 glass >of wine and I > >> am ready to dance on tables, 2 and I pass out) or take pain >medication. It > >> seems to effect me 10 times harder than the average person. I >am wondering > >> if this is the same for people who have bad effects from the >steroids-if the > >> ones who can tolerate pain medication and alcohol also don't >have the > >> horrible side effects from the steroids. On the steroids I am >so shaky I > >> can't sign my name, my eyes are so blurry I can't read or drive >and I feel > >> drugged all the time. My brain is foggy and all I want to do >is sleep ( on > >> the average 12 to 14 hours a day). I can handle the weight gain >and > >> puffiness, but feeling like I am a 90 year old invalid >overnight has been > >> hard. I am down to 10 my starting today and I can at least >read a little, > >> not so shaky and feel alive again. So far my breathing isn't >too bad > >> and I am only coughing a little. I guess its like chemo-for >some people it > >> kills ths cancer and for others it just kills them quicker. >Anyway- I am > >> anxiously awaiting the day I am totally off them ( and am hoping >you post > >> more bikini pictures in the meantime to keep me amused!) > > >> > >> > >> debra beck wrote: > >> ; > >> I have two brothers with sarcoidosis. Trust me the benefits of >prednisone > >> far out weigh the side effects. It will give you a better >longer life. > >> Gordon ipf/uip 12/03 > >> Re: new member > >> > >> > >> Hi Jan ( I am hoping this is your name!), > >> I too just turned 50 in January and two months later found >out I have > >> advanced pulmonary fibrosis and sarcoidosis. I had planned >to go to > >> Hawaii this year with my best friend and instead have spent >the past > >> months in doctor's offices and hospitals trying to get the >disease under > >> control. It is definately a shock when you first find out. >This group > >> has > >> been such a blessing for me and I know it will be for you >also. It is > >> wonderful to get the support, friendship and information so >desperately > >> needed as you fight this disease. I am so glad you don't >need > >> steroids-for a lot of us the side effects have out weighed >the benefits. > >> Anyway-welcome to our group- Sarcoid/PF 3/06 > >> > >> janquart01 wrote: > >> Hi, > >> I'm new to this group. A little nervous about it too. I was > diagnosed > >> with UIP/IPF a few months ago. I've known for about 7 years > that I've > >> had fibrosis in my lungs. But it wasn't until I had a SECOND > biopsy > >> that I found out that I had IPF. It kind of blew me away when I > was > >> told that I'd eventually require a lung transplant. I just >turned 50 > >> so that was pretty scary. I've been through the evaluation >process, > >> but am currently too healthy to list for transplant. I was VERY >happy > >> when they told me that! I currently take Advair and recently >started > >> taking NAC. I'm not on any steroids and don't want to be. I'm >keeping > >> a positive attitude and moving on with my life. But, I'm also >trying > >> to learn as much as I can so I know what to expect. I know that >a > >> transplant is a big IF not WHEN. So, I want to prepare myself >for the > >> loss of lung function that I know will happen. I'd really like >to be a > >> part of this group because I think we can all help each other >cope. > >> Thanks for listening! > >> > >> > >> > >> > >> > >> > >> --------------------------------- > >> Do you Yahoo!? > >> Everyone is raving about the all-new Yahoo! Mail. > >> > >> > >> > >> > >> > >> > >> --------------------------------- > >> Do you Yahoo!? > >> Everyone is raving about the all-new Yahoo! Mail. > >> > > > > > > > > > > > > __________________________________________________ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 24, 2006 Report Share Posted August 24, 2006 Funny Mr. Crafty.. YES I looked...lol I should have known coming from you..lol I'm going to break out the craft paint in a bit... we'll see. You will envy my creation... Much Love and Prayers, Peggy 9/04 ipf > Ref enlivening tubing/cannulas. Look in Ye Olde J.C. Whitney > Automotive catalog. They have HOSE COVERINGS. Ck the sizes, look for > the colors/material you want (including fittings ... which I'm sure > WON'T work) and go from there! > > Phred The Craftmaster > > ---- Original Message ---- > From: dnsrndl@... > To: Breathe-Support > Subject: Re: Re: R > Date: Wed, 23 Aug 2006 18:34:59 -0700 (PDT) > >> Peggy, >> I have never done hard drugs and am wondering about your wild >> past! (lol) Seriously though, my doctor is dropping me slowly, 5 mg >> at a time every two weeks. Getting from 40 to 15 wasn't too bad, >> but dropping from 15 to 10 has been a lot harder. I had heard that >> coming off of the 10 and below is the hardest and am hoping it isn't >> true. The best part about today is I finally figured out how to >> insert these cool little faces and now I want to learn how to >> insert cool graphics like Ginger. That and my own BOA will make my >> life complete! God Bless You- >> >> Peggy wrote: >> , I'm glad your down to 10mg. of prednisone.. I do >> not know what your >> Dr. is thinking..I guarantee the symptoms you have ARE prednisone. >> I hope >> you have decreased slowly. even then coming off is same as coming >> of hard >> drugs. I wish you could read the book everyone has been talking >> about. I >> have not read the book BUT I lived it. God Bless you... >> Much Love and Prayers, Peggy 9/04 ipf >> >>> Peggy, >>> I would think I was crazy if I didn't have this support group. >> My breathing >>> is better on pred and the doctor thinks all the strange effects >> are in my >>> head. I was hoping I would be totally off of it in a few >> months, but >>> realistically I think it is going to take me awhile. And, you >> were right-the >>> strange purple marks were bruises. I have no clue what I leaned >> against but >>> I had lots of dark purple spots. They are now fading to >> yellow. Before you >>> told me what they were I thought I had some type of measle >> melanomas! God >>> bless you- >>> >>> Peggy wrote: >>> Hi , Boy do I ever get what your saying.. That's me on >> pred. My Dr. >>> looked at me funny when I told her It just was NOT worth going >> through the >>> prednisone side effects for me. So I started down but It took a >> year to get >>> completely off. Then months of the effects so your not quite >> finished yet. >>> I will be praying for you. I hope you are on an anti-depressant >> it helps you >>> keep hope alive..cause you are more like yourself without the >> drug. >>> God Bless you... Much Love and Prayers, Peggy 9/04 ipf >>> >>>> Hi Gordon, >>>> I know it is a wonder drug for so many-unfortunately for me the >> side effects >>>> have been horrible. I have never been able to drink ( 1 glass >> of wine and I >>>> am ready to dance on tables, 2 and I pass out) or take pain >> medication. It >>>> seems to effect me 10 times harder than the average person. I >> am wondering >>>> if this is the same for people who have bad effects from the >> steroids-if the >>>> ones who can tolerate pain medication and alcohol also don't >> have the >>>> horrible side effects from the steroids. On the steroids I am >> so shaky I >>>> can't sign my name, my eyes are so blurry I can't read or drive >> and I feel >>>> drugged all the time. My brain is foggy and all I want to do >> is sleep ( on >>>> the average 12 to 14 hours a day). I can handle the weight gain >> and >>>> puffiness, but feeling like I am a 90 year old invalid >> overnight has been >>>> hard. I am down to 10 my starting today and I can at least >> read a little, >>>> not so shaky and feel alive again. So far my breathing isn't >> too bad >>>> and I am only coughing a little. I guess its like chemo-for >> some people it >>>> kills ths cancer and for others it just kills them quicker. >> Anyway- I am >>>> anxiously awaiting the day I am totally off them ( and am hoping >> you post >>>> more bikini pictures in the meantime to keep me amused!) >> >>>> >>>> >>>> debra beck wrote: >>>> ; >>>> I have two brothers with sarcoidosis. Trust me the benefits of >> prednisone >>>> far out weigh the side effects. It will give you a better >> longer life. >>>> Gordon ipf/uip 12/03 >>>> Re: new member >>>> >>>> >>>> Hi Jan ( I am hoping this is your name!), >>>> I too just turned 50 in January and two months later found >> out I have >>>> advanced pulmonary fibrosis and sarcoidosis. I had planned >> to go to >>>> Hawaii this year with my best friend and instead have spent >> the past >>>> months in doctor's offices and hospitals trying to get the >> disease under >>>> control. It is definately a shock when you first find out. >> This group >>>> has >>>> been such a blessing for me and I know it will be for you >> also. It is >>>> wonderful to get the support, friendship and information so >> desperately >>>> needed as you fight this disease. I am so glad you don't >> need >>>> steroids-for a lot of us the side effects have out weighed >> the benefits. >>>> Anyway-welcome to our group- Sarcoid/PF 3/06 >>>> >>>> janquart01 wrote: >>>> Hi, >>>> I'm new to this group. A little nervous about it too. I was >> diagnosed >>>> with UIP/IPF a few months ago. I've known for about 7 years >> that I've >>>> had fibrosis in my lungs. But it wasn't until I had a SECOND >> biopsy >>>> that I found out that I had IPF. It kind of blew me away when I >> was >>>> told that I'd eventually require a lung transplant. I just >> turned 50 >>>> so that was pretty scary. I've been through the evaluation >> process, >>>> but am currently too healthy to list for transplant. I was VERY >> happy >>>> when they told me that! I currently take Advair and recently >> started >>>> taking NAC. I'm not on any steroids and don't want to be. I'm >> keeping >>>> a positive attitude and moving on with my life. But, I'm also >> trying >>>> to learn as much as I can so I know what to expect. I know that >> a >>>> transplant is a big IF not WHEN. So, I want to prepare myself >> for the >>>> loss of lung function that I know will happen. I'd really like >> to be a >>>> part of this group because I think we can all help each other >> cope. >>>> Thanks for listening! >>>> >>>> >>>> >>>> >>>> >>>> >>>> --------------------------------- >>>> Do you Yahoo!? >>>> Everyone is raving about the all-new Yahoo! Mail. >>>> >>>> >>>> >>>> >>>> >>>> >>>> --------------------------------- >>>> Do you Yahoo!? >>>> Everyone is raving about the all-new Yahoo! Mail. >>>> >>> >>> >>> >>> >>> >>> __________________________________________________ >>> Quote Link to comment Share on other sites More sharing options...
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