steroids

[Guest guest]

I have actually been refusing the drug because of everything I read, so I appreciate your experience. that's why I asked,

[Guest guest]

I am a newbie with IPF. I have been reading the postings for awhile now

and would really like to draw from those of you with more experience

with this disease. My pulm dr is pushing me to start steroids. I am

reluctant to start since most of what I have read indicates that it's

not very helpful with this form of the disease, so, my questions for

those of you who have taken steroids is: Did the steroids help ? How

was the quality of your life effected, and if you had it to do over

would you even start steroids ?

Thanks for your help, (NJ) IPF 2005

[Guest guest]

My husband was diagnosed with IPF in 1999 and from what I understand from him when he was only on 10mg of prednesone he was fine however anything else in my opinion I would stay away, too many side effects. I do know it does take down the inflammation and expands the lungs. Lauriesquan_beach wrote: I am a newbie with IPF. I have been reading the postings for awhile now and would really like to draw from those of you with more experience with this disease. My pulm dr is

pushing me to start steroids. I am reluctant to start since most of what I have read indicates that it's not very helpful with this form of the disease, so, my questions for those of you who have taken steroids is: Did the steroids help ? How was the quality of your life effected, and if you had it to do over would you even start steroids ? Thanks for your help, (NJ) IPF 2005

Everyone is raving about the all-new Yahoo! Mail beta.

[Guest guest]

,

Prednisone diminishes the inflammation in

your lungs. It is a miracle drug. I used it for 20 years and did not get fat or

become fixated on a psychosis. I also worked full time.

When I stopped using it four years ago the

irreversible scarring of my lungs began.

Wish I had known then what I know now.

Cant imagine if you have had IPF since

2005 that it has not been prescribed

D. Fl.

From: Breathe-Support [mailto:Breathe-Support ] On Behalf Of squan_beach

Sent: Monday, December 11, 2006

11:15 AM

To: Breathe-Support

Subject:

steroids

I am a newbie with IPF. I have been reading the

postings for awhile now

and would really like to draw from those of you with more experience

with this disease. My pulm dr is pushing me to start steroids. I am

reluctant to start since most of what I have read indicates that it's

not very helpful with this form of the disease, so, my questions for

those of you who have taken steroids is: Did the steroids help ? How

was the quality of your life effected, and if you had it to do over

would you even start steroids ?

Thanks for your help, (NJ) IPF 2005

[Guest guest]

Hi , I hope this computer will let me answer this question before it freezes up. LOL

would I ever do it again??? (prednisone) I have never been so sick or suffered so much in my life. So NO, NO, a thousand times NO. PLUS prednisone does NOTHING for IPF. It is great for inflammation in the lungs but nothing for the IPF. I hate to tell you but there is nothing for us right now. Hoping and praying every day something is found to help. I am trying to loose the weight gained from prednisone so I can be tested to be listed for transplant. Read everything on our home site about this disease and I will tell you, TALK to your Dr. and ask WHAT prednisone will do for you..If you don't have inflammation it is not my cup of tea.. or the 70 lbs. I gained in 8 weeks.. No Thanks.. the pain coming off was the worst.

God Bless you on this crazy ride but keep your spirits up. God is with us and only He knows when our time here on earth is done..I personally plan to buy all new Christmas decorations after this year. Mine are about shot. We all still have a lot of time to live. This is not a disease that takes you in a short time like your mind will tell you. Keep living, planning and Praying.

love and prayers, Peggy ipf 9/04

Reply-To: Breathe-Support

Date: Mon, 11 Dec 2006 16:14:48 +0000

To: Breathe-Support

Subject: steroids

I am a newbie with IPF. I have been reading the postings for awhile now

and would really like to draw from those of you with more experience

with this disease. My pulm dr is pushing me to start steroids. I am

reluctant to start since most of what I have read indicates that it's

not very helpful with this form of the disease, so, my questions for

those of you who have taken steroids is: Did the steroids help ? How

was the quality of your life effected, and if you had it to do over

would you even start steroids ?

Thanks for your help, (NJ) IPF 2005

[Guest guest]

Hi ,

I was diagnosed this past June with interstitial lung disease and fibrotic NSIP a couple of months later based on an open lung biopsy and HRCT. I was started on steroids in the hospital and am now being weaned off slowly. From what I've read though steroids are not an effective treatment for fibroitc NSIP, they do help to stablize the disease initially. That has definitely been my experience.

I didn't have the horrible side effects that some report. I didn't gain weight, in fact I've been able to lose about 20 pounds. I did have some insomnia, a couple of yeast infections which cleared up pretty quickly and some other minor complaints. I was willing to deal with almost anything to get stablized and moving in the right direction.

I will tell you though that my experience is probably not typical. Most report more and worse side effects. There are some forms of this kind of lung disease that respond to steroids. Can your doctor tell you definitely that you have one of those? Do you think he wants to give you this because he feels like it's the only thing he can do. Most doctors hate doing nothing even when there's nothing to be done, it goes against all their training.

I'm sure I didn't help much. Whether or not to take these is really a crapshoot. They might help, they might not. They side effects might be awful or they could be minor. Fun, isn't this???

Beth Fibrotic NSIP 06/06

Don't try to explain it, just nod your head.

Breathe in, breathe out. Move on. J. Buffett

steroids

I am a newbie with IPF. I have been reading the postings for awhile now and would really like to draw from those of you with more experience with this disease. My pulm dr is pushing me to start steroids. I am reluctant to start since most of what I have read indicates that it's not very helpful with this form of the disease, so, my questions for those of you who have taken steroids is: Did the steroids help ? How was the quality of your life effected, and if you had it to do over would you even start steroids ? Thanks for your help, (NJ) IPF 2005

[Guest guest]

Ihave been diagnsed with IPF since 2004, and I haven't been prescribed any steroid drugs.I have heard nothing but bad things about it until now.I hope my Pulmo knows what he is doing.Mark L.Odegard

To: Breathe-Support From: dholloway@...Date: Mon, 11 Dec 2006 11:50:57 -0500Subject: RE: steroids

,

Prednisone diminishes the inflammation in your lungs. It is a miracle drug. I used it for 20 years and did not get fat or become fixated on a psychosis. I also worked full time.

When I stopped using it four years ago the irreversible scarring of my lungs began.

Wish I had known then what I know now.

Cant imagine if you have had IPF since 2005 that it has not been prescribed

D. Fl.

From: Breathe-Support [mailto:Breathe-Support ] On Behalf Of squan_beachSent: Monday, December 11, 2006 11:15 AMTo: Breathe-Support Subject: steroids

I am a newbie with IPF. I have been reading the postings for awhile now and would really like to draw from those of you with more experience with this disease. My pulm dr is pushing me to start steroids. I am reluctant to start since most of what I have read indicates that it's not very helpful with this form of the disease, so, my questions for those of you who have taken steroids is: Did the steroids help ? How was the quality of your life effected, and if you had it to do over would you even start steroids ? Thanks for your help, (NJ) IPF 2005

[Guest guest]

, My experience wasn't so pleasant. I went on prednisone when I was first diagnosed and all it did was help me gain 30 lbs, make my bones brittle, mess with my mind. I was on it for 1.5 years 60 mgs to start - tapered to 20 mgs. The weaning process was horrible. Your body becomes addicted to it and doesn't want to give it up. There are certain types of fibrosis that prednisone helps because it is a great anti-inflammatory and it does make you feel like a million bucks when you're on it. It's a deceiver. This is just my experience. Leanne Holloway wrote: , Prednisone diminishes the inflammation in your lungs. It is a miracle drug. I used it for 20 years and did not get fat or become fixated on a psychosis. I also worked full time. When I stopped using it four years ago the

irreversible scarring of my lungs began. Wish I had known then what I know now. Cant imagine if you have had IPF since 2005 that it has not been prescribed D. Fl.

From: Breathe-Support [mailto:Breathe-Support ] On Behalf Of squan_beachSent: Monday, December 11, 2006 11:15 AMTo: Breathe-Support Subject: steroids I am a newbie with

IPF. I have been reading the postings for awhile now and would really like to draw from those of you with more experience with this disease. My pulm dr is pushing me to start steroids. I am reluctant to start since most of what I have read indicates that it's not very helpful with this form of the disease, so, my questions for those of you who have taken steroids is: Did the steroids help ? How was the quality of your life effected, and if you had it to do over would you even start steroids ? Thanks for your help, (NJ) IPF 2005

Have a burning question? Go to Yahoo! Answers and get answers from real people who know.

[Guest guest]

,

When I was first diagnosed, I was put on prednisone. I gained much weight, had trouble sleeping and was very very anxious. After a weaning off time, I began to feel a little better. My disease was still there but at least I didnt have the side effects of the steroid. I think most pulmos. prescribe prednison in the beginning of your disease maturation. Your question of "would I do it all over again...definately NOT" But...it may help you.

Welcome to the group.

steroids

I am a newbie with IPF. I have been reading the postings for awhile now and would really like to draw from those of you with more experience with this disease. My pulm dr is pushing me to start steroids. I am reluctant to start since most of what I have read indicates that it's not very helpful with this form of the disease, so, my questions for those of you who have taken steroids is: Did the steroids help ? How was the quality of your life effected, and if you had it to do over would you even start steroids ? Thanks for your help, (NJ) IPF 2005

[Guest guest]

I am currently being weaned off of prednisone and i would not suggest

it to anyone for any reason.

i think the side effects are far worse than what it actually may do for

you. the steroids will only help if you have inflammation. as for it

helping with anything else, i personally don't think that it has helped

me.

EG 10-05

>

> I am a newbie with IPF. I have been reading the postings for awhile

now

> and would really like to draw from those of you with more experience

> with this disease. My pulm dr is pushing me to start steroids. I am

> reluctant to start since most of what I have read indicates that it's

> not very helpful with this form of the disease, so, my questions for

> those of you who have taken steroids is: Did the steroids help ? How

> was the quality of your life effected, and if you had it to do over

> would you even start steroids ?

> Thanks for your help, (NJ) IPF 2005

>

[Guest guest]

I was started out on 60 mg a day of prednisone. i went from sleeping

6-8 hours a day to sleeping about 20 hours a week! if i was lucky!

also i have gained nearly 80 pounds in the last 14 months from the

prednisone and yet my diffusion rate continues to drop. so that is

why i feel it is not very effective.

on a positive note, i have not had a cold, bronchitis or anything

like that in over 6 months..........now i don't know if it had

anything to do with the prednisone, or the fact that i have learned

to avoid most people except for family and very close friends.

EG 10-05

> I am a newbie with IPF. I have been reading the postings

for awhile now

> and would really like to draw from those of you with more

experience

> with this disease. My pulm dr is pushing me to start steroids. I am

> reluctant to start since most of what I have read indicates that

it's

> not very helpful with this form of the disease, so, my questions

for

> those of you who have taken steroids is: Did the steroids help ?

How

> was the quality of your life effected, and if you had it to do over

> would you even start steroids ?

> Thanks for your help, (NJ) IPF 2005

>

>

>

>

>

>

> ---------------------------------

> Everyone is raving about the all-new Yahoo! Mail beta.

>

[Guest guest]

Beth,

I too suffer with the yeast infections. i had never in my life had

one before i began the prednisone. and even now that i am only on one

third of what i was started at with the prednisone, i still get the

yeast infection every time my cycle comes..........too dang bad i'm

not old enough for menapause. LMAO! something i truly look forward

to!

EG 10-05

>

> Hi ,

>

> I was diagnosed this past June with interstitial lung disease and

fibrotic NSIP a couple of months later based on an open lung biopsy

and HRCT. I was started on steroids in the hospital and am now being

weaned off slowly. From what I've read though steroids are not an

effective treatment for fibroitc NSIP, they do help to stablize the

disease initially. That has definitely been my experience.

>

> I didn't have the horrible side effects that some report. I didn't

gain weight, in fact I've been able to lose about 20 pounds. I did

have some insomnia, a couple of yeast infections which cleared up

pretty quickly and some other minor complaints. I was willing to

deal with almost anything to get stablized and moving in the right

direction.

>

> I will tell you though that my experience is probably not typical.

Most report more and worse side effects. There are some forms of

this kind of lung disease that respond to steroids. Can your doctor

tell you definitely that you have one of those? Do you think he

wants to give you this because he feels like it's the only thing he

can do. Most doctors hate doing nothing even when there's nothing to

be done, it goes against all their training.

>

> I'm sure I didn't help much. Whether or not to take these is

really a crapshoot. They might help, they might not. They side

effects might be awful or they could be minor. Fun, isn't this???

>

> Beth Fibrotic NSIP 06/06

>

> Don't try to explain it, just nod your head.

> Breathe in, breathe out. Move on. J. Buffett

>

>

>

> steroids

>

> I am a newbie with IPF. I have been reading the postings for awhile

now

> and would really like to draw from those of you with more

experience

> with this disease. My pulm dr is pushing me to start steroids. I am

> reluctant to start since most of what I have read indicates that

it's

> not very helpful with this form of the disease, so, my questions

for

> those of you who have taken steroids is: Did the steroids help ?

How

> was the quality of your life effected, and if you had it to do over

> would you even start steroids ?

> Thanks for your help, (NJ) IPF 2005

>

[Guest guest]

darlin....be careful what you wish for. Menopause has turned my brain into cold oatmeal!!

Beth Fibrotic NSIP 06/06

Don't try to explain it, just nod your head.

Breathe in, breathe out. Move on. J. Buffett

steroids> > I am a newbie with IPF. I have been reading the postings for awhile now > and would really like to draw from those of you with more experience > with this disease. My pulm dr is pushing me to start steroids. I am > reluctant to start since most of what I have read indicates that

it's > not very helpful with this form of the disease, so, my questions for > those of you who have taken steroids is: Did the steroids help ? How > was the quality of your life effected, and if you had it to do over > would you even start steroids ? > Thanks for your help, (NJ) IPF 2005>

[Guest guest]

Hi , The only way to determine if the steroids help, is to take them for a period of time. The steroids can put you in "remisssion" or slow down some types of the disease. In my case the steroids cleared up the lungs so that the drs could make a definite dx. Needless to say, I do not have ipf, but hypersensitivity pneumonitis. before steroids I was dx with everything from ipf to cancer to tb. sometimes steroids help with the dx. I for one have not had any side effects except the yeast infections and which are rare with me and mild. I just want to say I'm glad you joined us, tho sorry for the reason. May God Keep You In The Palms Of His Hands. A. HP 6/06 TN jaime wrote: Beth,I too suffer with the yeast infections. i had never in my life had one before i began the prednisone. and even now that i am only on one third of what i was started at with the prednisone, i still get the yeast infection every time my cycle comes..........too dang bad i'm not old enough for menapause. LMAO! something i truly look forward to! EG 10-05>> Hi ,> > I was diagnosed this past June with

interstitial lung disease and fibrotic NSIP a couple of months later based on an open lung biopsy and HRCT. I was started on steroids in the hospital and am now being weaned off slowly. From what I've read though steroids are not an effective treatment for fibroitc NSIP, they do help to stablize the disease initially. That has definitely been my experience. > > I didn't have the horrible side effects that some report. I didn't gain weight, in fact I've been able to lose about 20 pounds. I did have some insomnia, a couple of yeast infections which cleared up pretty quickly and some other minor complaints. I was willing to deal with almost anything to get stablized and moving in the right direction.> > I will tell you though that my experience is probably not typical. Most report more and worse side effects. There are some forms of this kind of lung disease that respond to steroids. Can your doctor

tell you definitely that you have one of those? Do you think he wants to give you this because he feels like it's the only thing he can do. Most doctors hate doing nothing even when there's nothing to be done, it goes against all their training.> > I'm sure I didn't help much. Whether or not to take these is really a crapshoot. They might help, they might not. They side effects might be awful or they could be minor. Fun, isn't this???> > Beth Fibrotic NSIP 06/06> > Don't try to explain it, just nod your head.> Breathe in, breathe out. Move on. J. Buffett> > > > steroids> > I am a

newbie with IPF. I have been reading the postings for awhile now > and would really like to draw from those of you with more experience > with this disease. My pulm dr is pushing me to start steroids. I am > reluctant to start since most of what I have read indicates that it's > not very helpful with this form of the disease, so, my questions for > those of you who have taken steroids is: Did the steroids help ? How > was the quality of your life effected, and if you had it to do over > would you even start steroids ? > Thanks for your help, (NJ) IPF 2005>

Have a burning question? Go to Yahoo! Answers and get answers from real people who know.

[Guest guest]

: Do you take vitamins or any supplements to help in not catching a cold? Lauriejaime wrote: I was started out on 60 mg a day of prednisone. i went from sleeping 6-8 hours a day to sleeping about 20 hours a week! if i was lucky!also i have gained nearly 80 pounds in the last 14 months from the prednisone and yet my diffusion rate continues to drop. so that is why i feel it is not very effective.on a positive note, i have not had a cold, bronchitis

or anything like that in over 6 months..........now i don't know if it had anything to do with the prednisone, or the fact that i have learned to avoid most people except for family and very close friends. EG 10-05> I am a newbie with IPF. I have been reading the postings for awhile now > and would really like to draw from those of you with more experience > with this disease. My pulm dr is pushing

me to start steroids. I am > reluctant to start since most of what I have read indicates that it's > not very helpful with this form of the disease, so, my questions for > those of you who have taken steroids is: Did the steroids help ? How > was the quality of your life effected, and if you had it to do over > would you even start steroids ? > Thanks for your help, (NJ) IPF 2005> > > > > > > ---------------------------------> Everyone is raving about the all-new Yahoo! Mail beta.>

Access over 1 million songs - Yahoo! Music Unlimited.

[Guest guest]

I think every one is different, me, I would not be alive today if it were not for prednisone. I have Behcets (for about 15 years) and it was the only drug that made the lesions go away and stay away as I am on a low dose (3 - 5 mg) every day since. The weight gain is bad, some sleeplessness when the dose has to be raised, have bone density tests every year, but I am thankful for the drug. Louise/ipf/96_hdunn29778@... wrote: I have actually been refusing the drug because of everything I read, so I appreciate your experience. that's why I asked,

Any questions? Get answers on any topic at Yahoo! Answers. Try it now.

[Guest guest]

I have been on steroids since March of this yr. They started me at 40, then I settled in at 30 for about 6 months. I had the shaky hands, couldn't sleep, etc but I could at least breathe better. Then in Oct my DR decided to wean me off, 10mgs every 2 weeks, well when I got to 10mg, I was a mess. I couldn't breathe, severe depression, it was horrible so I went back to 30 mg. Then I got pneumonia so they upped me to 50 for a few days then back to 30. Well, you guessed it, now we're doing the weaning thing again, I went to 20 mg, was doin pretty good actually, but 4 days after I dropped to 10, here come the breathing problems again, SOB, lungs hurt, a little depressed. I called the U of MI dr and he said oh stay at 10. Well, its not his body suffering, grrrrrrrr. I dont know what to do, its like, quality of life is better at 20mg, but will these symptoms disappear eventually or is this what I have to look forward to at 10mg? The nurse said hesnot taking me off completely, just wants me at 10. I think I'm gonna see how I do in the next couple days but if I keep having trouble, ( by the way, total exhaustion, I sleep all the time) then I'm bumping myself back up to 20mg. My dr told me once not many people benefit from steroids but you are one of the rare ones that do, then leave me alone with them dang it!!!!...

Vicky81856

[Guest guest]

Louise,

I was put on 60mg immediatly after biopsy and diagnosis almost 10 years ago. After a few months and rehab I was slowly weaned off. Then after a couple of years I ended back in the hospital with pneumonia for a week. Back on 60mgs again. Since weaning, I have been on low doses. The low doses do not bother me, but the high doses are murder. Weight gain, sleeplessness, emotional stress...the whole bag of misery. Would I go on high doses again? I will do whatever the doc tells me...I am only here because of the mercy of God and the good care of my doc.

I just looked up Behcet's disease. I had never heard of it. Sounds painful and miserable. Do the doctors think it had anything to do with the onset of PF?

Hugs, Joyce PF 1997 Bronchiectasis 2004 INDIANA

> I have actually been refusing the drug because of everything I read, so I appreciate your experience. that's why I asked, > > > > > > ---------------------------------> Any questions? Get answers on any topic at Yahoo! Answers. Try it now.>

[Guest guest]

the only vitamins i take are a centrum one a day for women, 500 mg of

vitamin C, 500 mg of potassium. other than that, no i take nothing

extra.

EG 10-05

> > I am a newbie with IPF. I have been reading the postings

> for awhile now

> > and would really like to draw from those of you with more

> experience

> > with this disease. My pulm dr is pushing me to start steroids. I

am

> > reluctant to start since most of what I have read indicates that

> it's

> > not very helpful with this form of the disease, so, my questions

> for

> > those of you who have taken steroids is: Did the steroids help ?

> How

> > was the quality of your life effected, and if you had it to do

over

> > would you even start steroids ?

> > Thanks for your help, (NJ) IPF 2005

> >

> >

> >

> >

> >

> >

> > ---------------------------------

> > Everyone is raving about the all-new Yahoo! Mail beta.

> >

>

>

>

>

>

>

> ---------------------------------

> Access over 1 million songs - Yahoo! Music Unlimited.

>

[Guest guest]

Leanne and all of you that mentioned steroids: I also take

Prednuisone. I started 17 months ago on 40mg daily( now I'm down to

17.5) in addition to Imuran and Medpron to mitigate the prednisone, and

Nexiumand Pepcid to help the awful Gird that the Prednisone causes. My

previous bone density tests ( prior to getting NSIP) were perfect....I

now need Evista for the bone loss!!!I've become ADD and have difficulty

concentrating and reading and following directions on the knitting that

I have difficulty working on...my hands get shaky!! I have always been a

needlecrafter. I used to spend many hours on knitting, needlepoint,

crewel.These activities have been difficult to persue because my hands

don't always work well. I am a potter and sculptor in clay and I did go

back to work in the clay studio at my college( I taught there for 18

years...Reading and Study Skills and ESL) two days a week for the last

10 weeks. My daughter calls it my sanity workshop.She's right. I hadn't

been there since June 0f 2005.It had been my goal to get back by this

past September and I did it.To say I came home exhausted was the

understatement of the century..but I got there. Sleeping is a joke

without some form of sleep aid on most nights...but I have to stop

taking the Lunesta or Ambien every two weeks or so for a few days ( they

call it a " Drug Holiday " ) and then the meds work again!!!I absolutely

hate all the medications....I take Potassium and Vitamin D and a

diuretic to help with the puffiness. I've been somewhat successful in

not gaining weight ( I had lost 55lbs in the five years between 2000 and

2005) and I was determined not to gain that back again. I 've been

eating smaller portions and loads of veggies to feel full. This disease

has changed my life completely...I've had to stop teaching, my energy

level is very low regardless of activity. I find that I have to budget

my time and have made one very important discovery....IT'S A WASTE OF

MY ENERGY TO THINK NEGATIVE THOUGHTS OR BE WITH NEGATIVE PEOPLE! As I

said ...I'm very scattered ( ADD) so this posting is very unorganized

and I apologize. The positive thing I can say about the Prednisone is

that my PFT tests have improved and I do have less breathlessness. I

need Oxygen most of the time however.I use continuous flow liquid Oxy in

the house and have a Helios for going out. I get out daily regardless of

the reason. I go to local craft stores or to the Babies R Us to find yet

another cute thing for our grand-daughter. The entire situation is so

very frustrating for me. Until I became suddenly ill I had been in the

best shape in my life in decades. Sorry for this very complaint filled

posting.Especially since I just wrote that I don't waste my time with

negative thoughts! I think that your group will understand and I feel

that I can get some support from you. Thanks for reading and thanks in

advance for your caring.

Leanne Storch wrote:

> ,

>

> My experience wasn't so pleasant. I went on prednisone when I was

> first diagnosed and all it did was help me gain 30 lbs, make my bones

> brittle, mess with my mind. I was on it for 1.5 years 60 mgs to start

> - tapered to 20 mgs. The weaning process was horrible. Your body

> becomes addicted to it and doesn't want to give it up. There are

> certain types of fibrosis that prednisone helps because it is a great

> anti-inflammatory and it does make you feel like a million bucks when

> you're on it. It's a deceiver. This is just my experience.

>

> Leanne

>

> */ Holloway /* wrote:

>

> ,

> Prednisone diminishes the inflammation in your lungs. It is a

> miracle drug. I used it for 20 years and did not get fat or become

> fixated on a psychosis. I also worked full time.

> When I stopped using it four years ago the irreversible scarring

> of my lungs began.

> Wish I had known then what I know now.

> Cant imagine if you have had IPF since 2005 that it has not been

> prescribed

> D. Fl.

> ------------------------------------------------------------------------

> *From:* Breathe-Support

> [mailto:Breathe-Support ] *On Behalf Of *squan_beach

> *Sent:* Monday, December 11, 2006 11:15 AM

> *To:* Breathe-Support

> *Subject:* steroids

> I am a newbie with IPF. I have been reading the postings for

> awhile now

> and would really like to draw from those of you with more experience

> with this disease. My pulm dr is pushing me to start steroids. I am

> reluctant to start since most of what I have read indicates that it's

> not very helpful with this form of the disease, so, my questions for

> those of you who have taken steroids is: Did the steroids help ? How

> was the quality of your life effected, and if you had it to do over

> would you even start steroids ?

> Thanks for your help, (NJ) IPF 2005

>

>

> ------------------------------------------------------------------------

> Have a burning question? Go to Yahoo! Answers

>

<http://answers.yahoo.com/;_ylc=X3oDMTFvbGNhMGE3BF9TAzM5NjU0NTEwOARfcwMzOTY1NDUx\

MDMEc2VjA21haWxfdGFnbGluZQRzbGsDbWFpbF90YWcx>

> and get answers from real people who know.

>

>

>

>------------------------------------------------------------------------

>

>No virus found in this incoming message.

>Checked by AVG Free Edition.

>Version: 7.1.409 / Virus Database: 268.15.15/581 - Release Date: 12/9/2006

>

[Guest guest]

Hi , try pau de arco tincture in your tea at night, or even a few drops on your tounge, for yeast.

lynnA

> >> > Hi ,> > > > I was diagnosed this past June with interstitial lung disease and > fibrotic NSIP a couple of months later based on an open lung biopsy > and HRCT. I was started on steroids in the hospital and am now being > weaned off slowly. From what I've read though steroids are not an > effective treatment for fibroitc NSIP, they do help to stablize the > disease initially. That has definitely been my experience. > > > > I didn't have the horrible side effects that some report. I didn't > gain weight, in fact I've been able to lose about 20 pounds. I did > have some insomnia, a couple of yeast infections which cleared up > pretty quickly and some other minor complaints. I was willing to > deal with almost anything to get stablized and moving in the right > direction.> > > > I will tell you though that my experience is probably not typical. > Most report more and worse side effects. There are some forms of > this kind of lung disease that respond to steroids. Can your doctor > tell you definitely that you have one of those? Do you think he > wants to give you this because he feels like it's the only thing he > can do. Most doctors hate doing nothing even when there's nothing to > be done, it goes against all their training.> > > > I'm sure I didn't help much. Whether or not to take these is > really a crapshoot. They might help, they might not. They side > effects might be awful or they could be minor. Fun, isn't this???> > > > Beth Fibrotic NSIP 06/06> > > > Don't try to explain it, just nod your head.> > Breathe in, breathe out. Move on. J. Buffett> > > > > > > > steroids> > > > I am a newbie with IPF. I have been reading the postings for awhile > now > > and would really like to draw from those of you with more > experience > > with this disease. My pulm dr is pushing me to start steroids. I am > > reluctant to start since most of what I have read indicates that > it's > > not very helpful with this form of the disease, so, my questions > for > > those of you who have taken steroids is: Did the steroids help ? > How > > was the quality of your life effected, and if you had it to do over > > would you even start steroids ? > > Thanks for your help, (NJ) IPF 2005> >>

[Guest guest]

,

Don't you have trouble with the helios freezing up? I had it for awhile and I loved that I could carry it so easily but everytime I had somewhere really important to go, it would freeze up upon filling. It also doesn't last long enough. For awhile they let me have tanks for back up, but that changed and I had to go back to the tanks.

The brain fog that you mentioned under another name is common to people gasping for oxygen. Hey, at least we have something to blame it on.

I try not to be negative, but eventually we all have negative feelings and spew them out. We here on the board try to lift up the ones who are down. Dealing with a chronic illness, especially a life threatening illnes, is emotionally devastating. I have always been strong and independant, but this monster has brought me to my knees.

Glad to have you here.

Hugs, Joyce PF 1997 Bronchiectasis 2004 INDIANA

> >> > ,> > Prednisone diminishes the inflammation in your lungs. It is a> > miracle drug. I used it for 20 years and did not get fat or become> > fixated on a psychosis. I also worked full time.> > When I stopped using it four years ago the irreversible scarring> > of my lungs began.> > Wish I had known then what I know now.> > Cant imagine if you have had IPF since 2005 that it has not been> > prescribed> > D. Fl.> > ------------------------------------------------------------------------> > *From:* Breathe-Support > > [mailto:Breathe-Support ] *On Behalf Of *squan_beach> > *Sent:* Monday, December 11, 2006 11:15 AM> > *To:* Breathe-Support > > *Subject:* steroids> > I am a newbie with IPF. I have been reading the postings for> > awhile now> > and would really like to draw from those of you with more experience> > with this disease. My pulm dr is pushing me to start steroids. I am> > reluctant to start since most of what I have read indicates that it's> > not very helpful with this form of the disease, so, my questions for> > those of you who have taken steroids is: Did the steroids help ? How> > was the quality of your life effected, and if you had it to do over> > would you even start steroids ?> > Thanks for your help, (NJ) IPF 2005> >> >> > ------------------------------------------------------------------------> > Have a burning question? Go to Yahoo! Answers > > <http://answers.yahoo.com/;_ylc=X3oDMTFvbGNhMGE3BF9TAzM5NjU0NTEwOARfcwMzOTY1NDUxMDMEc2VjA21haWxfdGFnbGluZQRzbGsDbWFpbF90YWcx> > > and get answers from real people who know.> > > >> >> >------------------------------------------------------------------------> >> >No virus found in this incoming message.> >Checked by AVG Free Edition.> >Version: 7.1.409 / Virus Database: 268.15.15/581 - Release Date: 12/9/2006> >>

[Guest guest]

Hi

I was diagnosed with IPF March 2006. Have been on 10 mgs prednisone

since april. It has made a huge difference. Less SOB, less coughing,

I forget what the other symptoms were. The side effects are minimal at

this time since the dose is relatively low. It took about 1-2 weeks

the prednisone to make a difference, but it has definitely been worth

it for me.

pink joyce

>

> I am a newbie with IPF. I have been reading the postings for awhile

now

> and would really like to draw from those of you with more experience

> with this disease. My pulm dr is pushing me to start steroids. I am

> reluctant to start since most of what I have read indicates that it's

> not very helpful with this form of the disease, so, my questions for

> those of you who have taken steroids is: Did the steroids help ? How

> was the quality of your life effected, and if you had it to do over

> would you even start steroids ?

> Thanks for your help, (NJ) IPF 2005

>

[Guest guest]

I think the purpose of the steroids is to relieve the symptoms.

There is no known cure for IPF.

pink joyce

>

> Hi ,

>

> I was diagnosed this past June with interstitial lung disease and

fibrotic NSIP a couple of months later based on an open lung biopsy

and HRCT. I was started on steroids in the hospital and am now being

weaned off slowly. From what I've read though steroids are not an

effective treatment for fibroitc NSIP, they do help to stablize the

disease initially. That has definitely been my experience.

>

> I didn't have the horrible side effects that some report. I didn't

gain weight, in fact I've been able to lose about 20 pounds. I did

have some insomnia, a couple of yeast infections which cleared up

pretty quickly and some other minor complaints. I was willing to

deal with almost anything to get stablized and moving in the right

direction.

>

> I will tell you though that my experience is probably not typical.

Most report more and worse side effects. There are some forms of

this kind of lung disease that respond to steroids. Can your doctor

tell you definitely that you have one of those? Do you think he

wants to give you this because he feels like it's the only thing he

can do. Most doctors hate doing nothing even when there's nothing to

be done, it goes against all their training.

>

> I'm sure I didn't help much. Whether or not to take these is

really a crapshoot. They might help, they might not. They side

effects might be awful or they could be minor. Fun, isn't this???

>

> Beth Fibrotic NSIP 06/06

>

> Don't try to explain it, just nod your head.

> Breathe in, breathe out. Move on. J. Buffett

>

>

>

> steroids

>

> I am a newbie with IPF. I have been reading the postings for awhile

now

> and would really like to draw from those of you with more

experience

> with this disease. My pulm dr is pushing me to start steroids. I am

> reluctant to start since most of what I have read indicates that

it's

> not very helpful with this form of the disease, so, my questions

for

> those of you who have taken steroids is: Did the steroids help ?

How

> was the quality of your life effected, and if you had it to do over

> would you even start steroids ?

> Thanks for your help, (NJ) IPF 2005

>

[Guest guest]

Vicky

Have you tried 15 mgs prednisone?

pink joyce

>

> I have been on steroids since March of this yr. They started me at

40, then

> I settled in at 30 for about 6 months. I had the shaky hands,

couldn't sleep,

> etc but I could at least breathe better. Then in Oct my DR decided

to wean

> me off, 10mgs every 2 weeks, well when I got to 10mg, I was a mess.

I couldn't

> breathe, severe depression, it was horrible so I went back to 30

mg. Then I

> got pneumonia so they upped me to 50 for a few days then back to

30. Well,

> you guessed it, now we're doing the weaning thing again, I went to

20 mg, was

> doin pretty good actually, but 4 days after I dropped to 10, here

come the

> breathing problems again, SOB, lungs hurt, a little depressed. I

called the U of

> MI dr and he said oh stay at 10. Well, its not his body suffering,

grrrrrrrr.

> I dont know what to do, its like, quality of life is better at

20mg, but

> will these symptoms disappear eventually or is this what I have to

look forward

> to at 10mg? The nurse said hesnot taking me off completely, just

wants me at

> 10. I think I'm gonna see how I do in the next couple days but if

I keep

> having trouble, ( by the way, total exhaustion, I sleep all the

time) then I'm

> bumping myself back up to 20mg. My dr told me once not many people

benefit

> from steroids but you are one of the rare ones that do, then leave

me alone with

> them dang it!!!!...

>

> Vicky81856

>