Re: Weight Gain & Prednisone

[Guest guest]

>Hi, This is Carol Sue

I know myself that so far I've gain 25ibs. I been trying to fight

to lose this weight. The thing is the water retention, I take

furosmide 40 mg 2 times a days, it helps. I feel like I should be

harpooned. I feel so fat, and can't fit into my clothes. I was

down to 180, then all of a sudden menopause set in and I gain 20lbs

from taking harmones, so I stop that, then I quick smoking I gain 20

lbs. Then I got sick and gained 20 - 25 ibs in the hospital. From

the drugs, my hair is falling out. I'm not as worried about dying,

just wondering if I'm going to be able to FIT in the coffin.

Believe me gaing the weight and looking like the good year blimp

isan't the way I want to look. The meds make you want to eat even if

your not hungry and it seems like you are never full, not until your

so bloated. By then you hate yourself for eating. The best thing I

have tried is eating little meals 5 or 6 times a days, Such as toast

or cereal in the morning then maybe fruit for a snack then at lunch

soup or salad then another snack of something. then your supper and

then a snack before bed, but make it at least 3 hours before bed. I

know it hard to drink water because you'll retain it, but the water

pills help. My pulmo Doc doesn't want me to take predisone, because

of the side affects. But when I had been in the hopsital is when I

gain the weight now I am at 242 lbs. So it;s a real battle. Just

do the best you can if you come up with something that works let me

know Lots of Luck we could all use alittle

Carol Sue 03/07 PF

>

>

> Mornin' from Downunder - we're having lovely soaking rain, what a

TREAT!

>

> I've got a question re weight gain on Prednisone.did any of you

take fluid

> retention meds while on Pred? Did it help?

>

> Did anyone find a way to control the hunger pangs (apart from an

> iron-will)???

>

> I'd be interested to hear what your starting doses were & how long

they were

> maintained at that level.

>

> Would it be useful to start a specific Prednisone Database to get

an overall

> picture of everyone's experience of this complex drug?

>

> Perhaps including Starting Dose/ Tapering Regime/ Health

Improvements/

> Side-effects Experienced/ Ways of Coping/ Current Dose & anything

else that

> people think is important.

>

> Regards,

>

> in Oz

>

> IPF May 2007

>

[Guest guest]

,

Just happened to be on the computer when your post showed up so I'll start off the answers you're sure to get. Prednisone is a hot topic for sure!

I was first diagnosed in June of 06 while hospitalized. They started me on IV Solumedrol ( an intravenous form of prednisone) while I was in the hospital and I was discharged on 60 mg of oral prednisone. That was actually increased to either 80 or 100mg (I forget which). I was also on 20mg of Lasix among several other meds. I actually lost about 20 pounds during the time I was on the high doses of pred, I think primarily because I was forced to watch my diet carefully because the prednisone made my blood sugar very unstable.

My doctor began weaning me in October of last year and once I got down to around 30mg the steroid induced diabetes just went away. After that it became more difficult to control my weight. It's something I've always struggled with and I need to lose a considerable amount in order to be able to have a lung transplant eventually.

I've been off the pred now since February and I am losing weight, just slowly. The doctors seem to be satisfied because my disease remains stable and I'm consistently moving in a good direction.

I still believe the single most important component of losing weight is some type of exercise! I use the treadmill every day and do some upper body work with weights. (The routine I was taught in pulmonary rehab last year)

The more I move, the less I eat and the weight eventually comes off!

Beth in NY Fibrotic NSIP 06/06

"At the evening of life we shall be judged on our love."

St of the Cross

Weight Gain & Prednisone

Mornin’ from Downunder – we’re having lovely soaking rain, what a TREAT!

I’ve got a question re weight gain on Prednisone…did any of you take fluid retention meds while on Pred? Did it help?

Did anyone find a way to control the hunger pangs (apart from an iron-will)?? ?

I’d be interested to hear what your starting doses were & how long they were maintained at that level.

Would it be useful to start a specific Prednisone Database to get an overall picture of everyone’s experience of this complex drug?

Perhaps including Starting Dose/ Tapering Regime/ Health Improvements/ Side-effects Experienced/ Ways of Coping/ Current Dose & anything else that people think is important.

Regards,

in Oz

IPF May 2007

[Guest guest]

,

Just happened to be on the computer when your post showed up so I'll start off the answers you're sure to get. Prednisone is a hot topic for sure!

I was first diagnosed in June of 06 while hospitalized. They started me on IV Solumedrol ( an intravenous form of prednisone) while I was in the hospital and I was discharged on 60 mg of oral prednisone. That was actually increased to either 80 or 100mg (I forget which). I was also on 20mg of Lasix among several other meds. I actually lost about 20 pounds during the time I was on the high doses of pred, I think primarily because I was forced to watch my diet carefully because the prednisone made my blood sugar very unstable.

My doctor began weaning me in October of last year and once I got down to around 30mg the steroid induced diabetes just went away. After that it became more difficult to control my weight. It's something I've always struggled with and I need to lose a considerable amount in order to be able to have a lung transplant eventually.

I've been off the pred now since February and I am losing weight, just slowly. The doctors seem to be satisfied because my disease remains stable and I'm consistently moving in a good direction.

I still believe the single most important component of losing weight is some type of exercise! I use the treadmill every day and do some upper body work with weights. (The routine I was taught in pulmonary rehab last year)

The more I move, the less I eat and the weight eventually comes off!

Beth in NY Fibrotic NSIP 06/06

"At the evening of life we shall be judged on our love."

St of the Cross

Weight Gain & Prednisone

Mornin’ from Downunder – we’re having lovely soaking rain, what a TREAT!

I’ve got a question re weight gain on Prednisone…did any of you take fluid retention meds while on Pred? Did it help?

Did anyone find a way to control the hunger pangs (apart from an iron-will)?? ?

I’d be interested to hear what your starting doses were & how long they were maintained at that level.

Would it be useful to start a specific Prednisone Database to get an overall picture of everyone’s experience of this complex drug?

Perhaps including Starting Dose/ Tapering Regime/ Health Improvements/ Side-effects Experienced/ Ways of Coping/ Current Dose & anything else that people think is important.

Regards,

in Oz

IPF May 2007

[Guest guest]

Hey , I don't know about a database......there are so many variables. I mean, just from reading the responses regarding prednisone and the different courses of the disease in each of us, makes my head swim. I started out at 40mg a day. That was 2 years ago and it was to treat pneumonitis, actual burns in my lungs caused by radiation. It was the only thing that worked. My lungs would start to fill and I'd feel like I was drowning. After a few months the doc tried to bring down the dose. Then we went through over a year of down, back up, lung infections, pneumonia, down, back up, round and round.......what a swell time that was. I say was because it seems to have stabilized. Haven't had an lung infection for quite a while. Currently I'm at 25mg and holding. Now my thinking is, "if it ain't broke, don't fix it". My side effects were relatively mild after hearing of other folks. The most serious was/is diabetes, but that's well controlled by meds.

There is the moon-face, my doc calls me "Alvin", (affectionately) after the singing chipmunk. So I naturally respond by calling him "Dr Herriot", after the English vet of "All Creatures great and small" fame. But I digress........Club fingers.....those are fun to show folks....."hey, wanna see something cool........?" Some weight gain, but only a few pounds, like under 10. Some how, though, I suspect that has more to do with awful diet.......You know, meds control the diabetes, I rationalize that I can go ahead and have that bowl of rocky road.......my wife calls it self-delusion, and of course she's right. Maybe the most bizarre side effect, that has since gone away, was excessive hair growth. I'm 62, and for the first 25-30 years of my life I was convinced that, as a man, I needed to have a nice crop of hair on my chest. Never happened, until prednisone. Only not on my chest.......my back, mmmmmm, my arms, eye brows, and the most fun of all, my

nose hairs. Okay ladies, now I have lots more I could say about excessive hair growth, but out of respect for your sensibilities, I shant (is that a word). I'm glad to say that this particular side effect has virtually disappeared. Never did effect my head of hair......it went from brown and straight to almost black and wavy after chemo. Well, there's my 2 cents....jim Francis wrote: Mornin’ from Downunder – we’re having lovely soaking rain, what a TREAT! I’ve got a question re weight gain on Prednisone…did any of you take fluid retention meds while on Pred? Did it help? Did anyone find a way to control the hunger pangs (apart from an iron-will)??? I’d be

interested to hear what your starting doses were & how long they were maintained at that level. Would it be useful to start a specific Prednisone Database to get an overall picture of everyone’s experience of this complex drug? Perhaps including Starting Dose/ Tapering Regime/ Health Improvements/ Side-effects Experienced/ Ways of Coping/ Current Dose & anything else that people think is important. Regards, in

Oz IPF May 2007

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[Guest guest]

Beth,

I, too, was so sick that I didn't know what they were pumping into me. After 9 days in CCI, I came home with an armload of drugs and I just took it! The next time I had to go on high doses, I knew what I was in for, but the options didn't look so good. So, off for another round of madness and rolly polly. You just do what you gotta do to survive!

Hugs, Joyce D.PULMONARY FIBROSIS/LUPUS 1997 BRONCHIECTASIS 2004 INDIANA 2 COR. 12:10 ....when I am weak, then I am strong.> > <image001.gif>> > Mornin' from Downunder – we're having lovely soaking rain, what a TREAT!> > I've got a question re weight gain on Prednisone…did any of you take > fluid retention meds while on Pred? Did it help?> > Did anyone find a way to control the hunger pangs (apart from an iron-> will)???> > I'd be interested to hear what your starting doses were & how long > they were maintained at that level.> > Would it be useful to start a specific Prednisone Database to get an > overall picture of everyone's experience of this complex drug?> > Perhaps including Starting Dose/ Tapering Regime/ Health > Improvements/ Side-effects Experienced/ Ways of Coping/ Current Dose > & anything else that people think is important.> > Regards,> > in Oz> > IPF May 2007> > > > > > > > No virus found in this incoming message.Checked by AVG Free > Edition. Version: 7.5.485 / Virus Database: 269.13.5/990 - Release > Date: 9/4/2007 10:36 PM> > > > > > >

[Guest guest]

Beth,

I, too, was so sick that I didn't know what they were pumping into me. After 9 days in CCI, I came home with an armload of drugs and I just took it! The next time I had to go on high doses, I knew what I was in for, but the options didn't look so good. So, off for another round of madness and rolly polly. You just do what you gotta do to survive!

Hugs, Joyce D.PULMONARY FIBROSIS/LUPUS 1997 BRONCHIECTASIS 2004 INDIANA 2 COR. 12:10 ....when I am weak, then I am strong.> > <image001.gif>> > Mornin' from Downunder – we're having lovely soaking rain, what a TREAT!> > I've got a question re weight gain on Prednisone…did any of you take > fluid retention meds while on Pred? Did it help?> > Did anyone find a way to control the hunger pangs (apart from an iron-> will)???> > I'd be interested to hear what your starting doses were & how long > they were maintained at that level.> > Would it be useful to start a specific Prednisone Database to get an > overall picture of everyone's experience of this complex drug?> > Perhaps including Starting Dose/ Tapering Regime/ Health > Improvements/ Side-effects Experienced/ Ways of Coping/ Current Dose > & anything else that people think is important.> > Regards,> > in Oz> > IPF May 2007> > > > > > > > No virus found in this incoming message.Checked by AVG Free > Edition. Version: 7.5.485 / Virus Database: 269.13.5/990 - Release > Date: 9/4/2007 10:36 PM> > > > > > >

[Guest guest]

Beth,

I, too, was so sick that I didn't know what they were pumping into me. After 9 days in CCI, I came home with an armload of drugs and I just took it! The next time I had to go on high doses, I knew what I was in for, but the options didn't look so good. So, off for another round of madness and rolly polly. You just do what you gotta do to survive!

Hugs, Joyce D.PULMONARY FIBROSIS/LUPUS 1997 BRONCHIECTASIS 2004 INDIANA 2 COR. 12:10 ....when I am weak, then I am strong.> > <image001.gif>> > Mornin' from Downunder – we're having lovely soaking rain, what a TREAT!> > I've got a question re weight gain on Prednisone…did any of you take > fluid retention meds while on Pred? Did it help?> > Did anyone find a way to control the hunger pangs (apart from an iron-> will)???> > I'd be interested to hear what your starting doses were & how long > they were maintained at that level.> > Would it be useful to start a specific Prednisone Database to get an > overall picture of everyone's experience of this complex drug?> > Perhaps including Starting Dose/ Tapering Regime/ Health > Improvements/ Side-effects Experienced/ Ways of Coping/ Current Dose > & anything else that people think is important.> > Regards,> > in Oz> > IPF May 2007> > > > > > > > No virus found in this incoming message.Checked by AVG Free > Edition. Version: 7.5.485 / Virus Database: 269.13.5/990 - Release > Date: 9/4/2007 10:36 PM> > > > > > >

[Guest guest]

I totally agree. Do something like a crossword, or pick up a craft you can sit and enjoy!!!

Tillman

PF/Hermansky Pudlak Syndrome 2002

NC

www.myspace.com/karenshpskorner

_______________________________________________________________ Tillman, Regional Coordinator, Mid Atlantic-USAHermansky-Pudlak Syndrome Network IncMy NC phone:1 NY home office 1. / fax * HPS is a genetic disorder that is characterized by albinism, visual impairment, and a bleeding problem.Some genetic mutations can include colitis and pulmonary fibrosis.* http://www.hpsnetwork.org One South Road Oyster Bay, NY 11771

Re: Weight Gain & Prednisone

Judy,

You have no idea what a thrill it is to see your posts pop up. I am just in awe of you. I hear no complaining and you are certain to be having pain. What hope you give to those who are waiting!

60mg was as high as I went. They may have been giving me more when I was in hospital, but I came home at 60. Stayed on high doses quite a while two times. I never tapered below 10. I am at 10 3 times a week right now, but looking at going higher. I do o.k. until about 20mg, then the demons gather.

Don't you be cleaning for goodness sakes. Prednisone does make you feel like washing walls at 2 a.m., but restrain yourself.

Hugs, Joyce D.PULMONARY FIBROSIS/LUPUS 1997 BRONCHIECTASIS 2004 INDIANA 2 COR. 12:10 ....when I am weak, then I am strong.> > >> > > <image001.gif>> > >> > > Mornin' from Downunder – we're having lovely soaking rain,> > what a TREAT!> > >> > > I've got a question re weight gain on Prednisone…did any of> > you take> > > fluid retention meds while on Pred? Did it help?> > >> > > Did anyone find a way to control the hunger pangs (apart from an > iron-> > > will)???> > >> > > I'd be interested to hear what your starting doses were & how > long> > > they were maintained at that level.> > >> > > Would it be useful to start a specific Prednisone Database to > get an> > > overall picture of everyone's experience of this complex drug?> > >> > > Perhaps including Starting Dose/ Tapering Regime/ Health> > > Improvements/ Side-effects Experienced/ Ways of Coping/ Current > Dose> > > & anything else that people think is important.> > >> > > Regards,> > >> > > in Oz> > >> > > IPF May 2007> > >> > >> > >> > >> > >> > >> > >> > > No virus found in this incoming message.Checked by AVG Free> > > Edition. Version: 7.5.485 / Virus Database: 269.13.5/990 - > Release> > > Date: 9/4/2007 10:36 PM> > >> > >> > >> > >> > >> > >> > >