Re: new member

Posted April 30, 2007 · April 30, 2007

Dear Oly I read your comment. I was on steroids too. I took my own self off. Not that you should always tell your doctor what you feel. I did not feel any different from when I was on the steroid and off. I felt that they only did harm not good. But we are all different. My lung function is 35% and I've been sick for 41/2 years. Its a monster. I pray everyday for a cure. anyway the point I am trying to make is after I stopped the prednisone I slowly lost 50lbs. and I felt stronger. I can walk more. I just don't believe in steroids thats all. I hope you don't take my comment wrong. I just don't think steroids would have prolonged my life. It would have killed me quicker. I am steady and stable. Trying to lose 10lbs for a lung transplant. I have faith. What ever the good Lord wants he'll provide. Tammy PF 2002Oly wrote: Dear Carol: When I was first diagnosed 4 years ago with all the steroids , Prednisolone medication they made me blow up.. then besides the water retention that killed me.. I starting eating like crazy,,, I was always hungry, and I gained almost 100 pounds.. It does that to some people and not to others?????Which pisses me off cause my doctors want me to loose weight... and it's supper hard because I can't do anything except walk, and that I can't do for long...even with my oxygen behind me.. Now I am a diabetic on top of everything else...

I am on a sugar buster diet it seems okay, but loosing takes forever!! For me.. The good new the hunger calms down when they lower the dose, at least for me.. Well Carol welcome to the group, their are a lot of incredible people on this board.. and you will love everyone of them.. Take care, you are part of our prayers now.. Oly Ahhh...imagining that irresistible "new car" smell?Check out new cars at Yahoo! Autos.

Posted May 1, 2007 · May 1, 2007

Tammy...I read your dislike of Prednisone. I feel about the same. If the time comes when that is the only alternative....although it is pretty much right now....I elect not to take it. My weight is a factor now. I'm 200 plus, and unable to exercise due to sob. I battle the bulge all the time with little success. Sometimes I wonder why I bother! I'm on the South Beach Diet and I think it's a good one but again, I choose to not add Pred. to the problems.

Something I've recently noticed is the sob seems to have something to do with water retention! If I take the water-pills regularly not only do my rings fit but I breathe better! Oly mentioned water retention also.

If I'm careless about water-pills - I thought they would deplete my body of Potassium - it actually feels like I have fluid in my lungs.

Anyone else notice the connection?

Sher ipf 3-06 OR."Don't worry about tomorrow, God is already there"

Re: Re: new member

Dear Oly

I read your comment. I was on steroids too. I took my own self off. Not that you should always tell your doctor what you feel. I did not feel any different from when I was on the steroid and off. I felt that they only did harm not good. But we are all different. My lung function is 35% and I've been sick for 41/2 years. Its a monster. I pray everyday for a cure. anyway the point I am trying to make is after I stopped the prednisone I slowly lost 50lbs. and I felt stronger. I can walk more. I just don't believe in steroids thats all. I hope you don't take my comment wrong. I just don't think steroids would have prolonged my life. It would have killed me quicker. I am steady and stable. Trying to lose 10lbs for a lung transplant.

I have faith. What ever the good Lord wants he'll provide.

Tammy PF 2002Oly <diaz_oly> wrote:

Dear Carol:

When I was first diagnosed 4 years ago with all the steroids , Prednisolone medication they made me blow up.. then besides the water retention that killed me.. I starting eating like crazy,,, I was always hungry, and I gained almost 100 pounds.. It does that to some people and not to others?????Which pisses me off cause my doctors want me to loose weight... and it's supper hard because I can't do anything except walk, and that I can't do for long...even with my oxygen behind me.. Now I am a diabetic on top of everything else...

I am on a sugar buster diet it seems okay, but loosing takes forever!! For me..

The good new the hunger calms down when they lower the dose, at least for me..

Well Carol welcome to the group, their are a lot of incredible people on this board.. and you will love everyone of them.. Take care, you are part of our prayers now..

Oly

Ahhh...imagining that irresistible "new car" smell?Check out new cars at Yahoo! Autos.

Posted May 1, 2007 · May 1, 2007

Sher,

The Battle of the Bulge is one that I am also fighting. I am within a

ten pound range of going to see the lung transplant team. However I

want to respond to the question about water pills.

Taking Prednisone = Weight Gain + Bloating + Water Pills

Take Away Prednisone = Excess Weight + Bloating + More Water Pills = Low

Potassium

(Potassium + Water Pills) - Bloating = The Opportunity to Try to Lose

Weight ????

This is a hard battle to win but it sure wwould be nice to win this war!

Good Luck to Everyone

Jane IPF 12/1998 Dalton, Georgia aka pianolady_musicgirl

> Dear Carol:

> When I was first diagnosed 4 years ago with all the steroids ,

Prednisolone medication they made me blow up.. then besides the water

retention that killed me.. I starting eating like crazy,,, I was always

hungry, and I gained almost 100 pounds.. It does that to some people and

not to others?????Which pisses me off cause my doctors want me to loose

weight... and it's supper hard because I can't do anything except walk,

and that I can't do for long...even with my oxygen behind me.. Now I am

a diabetic on top of everything else...

> I am on a sugar buster diet it seems okay, but loosing takes forever!!

For me..

> The good new the hunger calms down when they lower the dose, at least

for me..

> Well Carol welcome to the group, their are a lot of incredible people

on this board.. and you will love everyone of them.. Take care, you are

part of our prayers now..

> Oly

>

------------------------------------------------------------------------\

----

> Ahhh...imagining that irresistible " new car " smell?

> Check out new cars at Yahoo! Autos.

>

Posted May 1, 2007 · May 1, 2007

Thanks Jane...yeah, I agree.

Sher ipf 3-06 OR."Don't worry about tomorrow, God is already there"

Re: new member

Sher,The Battle of the Bulge is one that I am also fighting. I am within aten pound range of going to see the lung transplant team. However Iwant to respond to the question about water pills.Taking Prednisone = Weight Gain + Bloating + Water PillsTake Away Prednisone = Excess Weight + Bloating + More Water Pills = LowPotassium(Potassium + Water Pills) - Bloating = The Opportunity to Try to LoseWeight ????This is a hard battle to win but it sure wwould be nice to win this war!Good Luck to EveryoneJane IPF 12/1998 Dalton, Georgia aka pianolady_musicgirl> Dear Carol:> When I was first diagnosed 4 years ago with all the steroids ,Prednisolone medication they made me blow up.. then besides the waterretention that killed me.. I starting eating like crazy,,, I was alwayshungry, and I gained almost 100 pounds.. It does that to some people andnot to others?????Which pisses me off cause my doctors want me to looseweight... and it's supper hard because I can't do anything except walk,and that I can't do for long...even with my oxygen behind me.. Now I ama diabetic on top of everything else...> I am on a sugar buster diet it seems okay, but loosing takes forever!!For me..> The good new the hunger calms down when they lower the dose, at leastfor me..> Well Carol welcome to the group, their are a lot of incredible peopleon this board.. and you will love everyone of them.. Take care, you arepart of our prayers now..> Oly>>----------------------------------------------------------\----> Ahhh...imagining that irresistible "new car" smell?> Check out new cars at Yahoo! Autos.>

Posted May 1, 2007 · May 1, 2007

Jane,`You are so right-on!!!!I'm having more water retention with the lower dose of prednisone!!!!

I can't take Lasix because I'm allergic to sulfa drugs. So, I take HCTZ and it barely does anything, but I guess it would be worse without it!!I also take 80 potassium and still have to watch the sodium!!It's a full time job..this miserable disease!

-- Z.fibriotic NSIP/05/PA Potter, reader,carousel lover, and MomMom to Darah "I'm gonna be iron like a lion in Zion." Bob Marley

-------------- Original message --------------

Sher,The Battle of the Bulge is one that I am also fighting. I am within aten pound range of going to see the lung transplant team. However Iwant to respond to the question about water pills.Taking Prednisone = Weight Gain + Bloating + Water PillsTake Away Prednisone = Excess Weight + Bloating + More Water Pills = LowPotassium(Potassium + Water Pills) - Bloating = The Opportunity to Try to LoseWeight ????This is a hard battle to win but it sure wwould be nice to win this war!Good Luck to EveryoneJane IPF 12/1998 Dalton, Georgia aka pianolady_musicgirl> Dear Carol:> When I was first diagnosed 4 years ago with all the steroids ,Prednisolone medication they made me blow up.. then besides the waterretention that killed me.. I starting eating like crazy,,, I was alwayshungry, and I gained almost 100 pounds.. It does that to some people andnot to others?????Which pisses me off cause my doctors want me to looseweight... and it's supper hard because I can't do anything except walk,and that I can't do for long...even with my oxygen behind me.. Now I ama diabetic on top of everything else...> I am on a sugar buster diet it seems okay, but loosing takes forever!!For me..> The good new the hunger calms down when they lower the dose, at leastfor me..> Well Carol welcome to the group, their are a lot of incredible peopleon this board.. and you will love everyone of them.. Take care, you arepart of our prayers now..> Oly>>----------------------------------------------------------\----> Ahhh...imagining that irresistible "new car" smell?> Check out new cars at Yahoo! Autos.>

Posted May 2, 2007 · May 2, 2007

I almost feel stupid, but here I go. even though i'm not the

patient... I have been on water pills, gosh I guess I started them in

HS. Started on HCTC and have progressed to Lasix. I have found some

homeopathic ways to loose the water though. Drink at least a 12oz

glass of water with your pill. drink or take cranberry tabs. great

antioxident also. dandilion tea (yes the weed) I have also replaced

my lettuce with fresh stems from my yard (make sure the dog doesn't

pee there) heat up your system with ceyenne pepper capsuls, not only

does it help with weight loss, but with the water too. start slow one

a day for the first few days then increase. If you have burning in

your stomach back off a bit on the dose unless your on the first

week, if you have any ulceration in your stomach they will heal

usally in a week or too. Make sure you take them with a meal, not on

a empty stomach. watch your soda intake just one makes me bloat, diet

or not. No beer that is the worse, and stay away from the chips too.

My friend that is on 20mg of prednisone found when the dose was take

every other day that the bloat decreased, check with your dr first. I

hope this is helpful, good luck.

Ceci/mom/pf/03

> > Dear Carol:

> > When I was first diagnosed 4 years ago with all the steroids ,

> Prednisolone medication they made me blow up.. then besides the

water

> retention that killed me.. I starting eating like crazy,,, I was

always

> hungry, and I gained almost 100 pounds.. It does that to some

people and

> not to others?????Which pisses me off cause my doctors want me to

loose

> weight... and it's supper hard because I can't do anything except

walk,

> and that I can't do for long...even with my oxygen behind me.. Now

I am

> a diabetic on top of everything else...

> > I am on a sugar buster diet it seems okay, but loosing takes

forever!!

> For me..

> > The good new the hunger calms down when they lower the dose, at

least

> for me..

> > Well Carol welcome to the group, their are a lot of incredible

people

> on this board.. and you will love everyone of them.. Take care, you

are

> part of our prayers now..

> > Oly

> >

> ----------------------------------------------------------\

> ----

> > Ahhh...imagining that irresistible " new car " smell?

> > Check out new cars at Yahoo! Autos.

> >

>

Posted May 2, 2007 · May 2, 2007

thanks for sharing this.

i have never liked water but i have learned to drink at least 3

glasses a day regardless.(and normally 2 bottles of water when i am

working out) i take 20 mg of lasix,and 50 mg of aldectone. i also

found something at the vitamin store next door to the gym i go to. i

bought one bottle because i wasn't sure if i could take it or not. i

showed it to my dr and they said it was fine because it is all

natural. (it's a little pricey i guess, about $1 a day) is called

Xpel and cost about $20. it says to take 4 tablets twice a day but

with the lasix and aldectone, i just take it once a day (and that is

when i have my 32 ounce glass of cranberry/grape juice) i can't drink

that stuff straight. YUK! between prednisone and chemo my feet and

ankles had swollen so much i could not wear socks, and sometimes i

could not even get a flipflop on....now i have ankles again. i just

wish i could do something with this jelly belly. LOL

LCH 10-05

> > > Dear Carol:

> > > When I was first diagnosed 4 years ago with all the steroids ,

> > Prednisolone medication they made me blow up.. then besides the

> water

> > retention that killed me.. I starting eating like crazy,,, I was

> always

> > hungry, and I gained almost 100 pounds.. It does that to some

> people and

> > not to others?????Which pisses me off cause my doctors want me to

> loose

> > weight... and it's supper hard because I can't do anything except

> walk,

> > and that I can't do for long...even with my oxygen behind me..

Now

> I am

> > a diabetic on top of everything else...

> > > I am on a sugar buster diet it seems okay, but loosing takes

> forever!!

> > For me..

> > > The good new the hunger calms down when they lower the dose, at

> least

> > for me..

> > > Well Carol welcome to the group, their are a lot of incredible

> people

> > on this board.. and you will love everyone of them.. Take care,

you

> are

> > part of our prayers now..

> > > Oly

> > >

> > ----------------------------------------------------------\

> > ----

> > > Ahhh...imagining that irresistible " new car " smell?

> > > Check out new cars at Yahoo! Autos.

> > >

> >

>

Posted May 2, 2007 · May 2, 2007

Ceci, This sounds like so much work!!!!I'd try it but I'm allergic to

chili peppers ( cayenne) and sulfa ( lasix is a sulfa drug)!!!!

Z fibriotic NSIP/05

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

partsbtch69 wrote: