Re: Re: The rules of Prednisone

[Guest guest]

Hi , Everyone in this group knows what a nightmare I had with prednisone. That was Me.. But I do KNOW for sure a 20 mg drop is dangerous. I almost wound up in the hosp. because I cut back 20 mg on my own. I had been on 60 and thought it was poisoning me so hardheaded me.. well I have never been so sick, in pain--sharp pain in my knees and hip joints. So please be ever so careful with prednisone. I could just cry every time I think of all my family and I went through trying to get me off that stuff.. It is the best for major pain or infection but I'll never take it again. Keep in contact with his Dr. and know the aches and pains the shakes, blurry vision.. It is really crazy.. God Bless You for the love and care you are giving and please tell your dad I'll be praying for him... y'all too. God Bless...

Peggy 09/04 ipf

,

Almost everyone on this board has had experience with Prednisone. Those who have had thier dosage cut back drastically suffered severe side effects. My doctor took me down very, very slowly....about 5 or even 2 1/2 mgs at a time. Took some time but I did not notice any adverse reactions. I have been on prednisone for nine years but am on very low dosages now.

It is difficult to go against your doctors orders and I certainly would not advise you to do that. I would ask her/him however why so drastic a cut back.

I hope that or Diane sees your post. They are both nurses and may have a better answer.

P. may have references with answers also.

My prayers are with your family,

Hugs,

Joyce PF 1997

>

> Hello everyone,

> I don't very often write in your group. I am a caregiver but came to

> this group first. I came in with my husband just diagnosed and

> couldn't find out much information. My husbands daughter also signed

> up so she would kind of know from you all what her father was going

> through. Thanks to, I believe Joyce, we are both a little nervous

> about my husbands prednisone. She seemed to know her stuff. He was on

> 20 twice a day. He went to the lung Dr. a week ago. The Dr. was going

> to do an x-ray but since there was no noticable change he decided to do

> a ct scan. He changed his prednisone from the 40 a day to 20 a day.

> Kara and I both feel that this is kind of drastic after listening to

> everyone on this

[Guest guest]

Hello , I was sitting at the table eating supper and got tickled. Was thinking about your post about your husband and predisone and cutting his dosage. You said he had been yelling at you. Now is your chance to be in controll. It might do him some good to have something to holler about. It won't do any harm. Just result in a little pain. Am I mean or what. I went thru withdrawal and went back on it. It's bad for your sugar in large doses. It's a good drug for some people. Good luck and try to enjoy your vacation. Grey 10/05 IPF Some of us kind of juggle these doseages around to try to get a workable solution. You need to keep a handle on his blood sugar. Predisone will give you diabeties. It can be a bad drug too. Alldrugs are a kind of poison one way or another. Thats what my doc told me last monday. Have a good time

Re: The rules of Prednisone

> >> > Hello everyone,> > I don't very often write in your group. I am a caregiver but came to> > this group first. I came in with my husband just diagnosed and> > couldn't find out much information. My husbands daughter also signed> > up so she would kind of know from you all what her father was going> > through. Thanks to, I believe Joyce, we are both a little nervous> > about my husbands prednisone. She seemed to know her stuff. He was on> > 20 twice a day. He went to the lung Dr. a week ago. The Dr. was going> > to do an x-ray but since there was no noticable change he decided to> do> > a ct scan. He changed his prednisone from the 40 a day to 20 a day.> > Kara and I both feel that this is kind of drastic after listening to> > everyone on this web site and some nurses that I know. Everyone says> > that you need to be weened off the stuff. Is it a bad sign when you> > hear they don't notice any changes and are doing a scan for more> > definition and then his dose is cut so low? Any info from you all> > would be appreciated.> > > >>

[Guest guest]

As most know I had no problem with prednisone, such as 'moonface', and weight gain. I did have a bit of a situation with swollen feet. But we lowered the dosage and all is well. It was lowered too fast and my withdrael were bigtime. It does not work for everybody. It's important to keep the communcation lines with your Dr. always open.

kiss kiss,

Ginger

ipf 9/04

[Guest guest]

Diane, Post the title to book about prednisone. I would like to read it. I am kind of like someone I am talking to about the pain we are in or will be in with this stuff that will take us away from our world as we know it. I was shocked when I found out what I had lurking in my lungs. I do not want to live a long time with severe pain and no way to get better. My dad was peralized from the neck down for 20 years before he died. The doctors never figured out exactly what was wrong so they labeled him with ALS. They had to label him with something to get insurance. He would beg me to shoot him????? Our family took care of him the best we could. Hello newbies wanted to give you some advice you did not ask for. Go to your search eng on your computer and type in oxygen meter and select one or more of the sites that come up. If you are sick enough to come to this web site you need a pulse oxygen meter. Ins and medicare will not pay for it. It measures your pulse and blood oxygen level. If your blood oxygen level is below 90 your body is being damaged from the poor job your lungs are doing getting oxygen to your body and you could be needing outside oxygen. This is good advice that I didn't get. Knowledge is the key to longgevity with this lung stuff. Get educated quick about how to help yourself. Do not depend on the docs for everything. Let me know if I can help you. Grey 10/05 IPF

Re: The rules of Prednisone

I was in the middle of replying about the prednisone and had to stop. When I came back, my reply was gone...so if you get half a reply, that's why...I wanted to try to answer some questions abut the prednisone....it's been around forever...and has helped countless numbers of people...however, just like most drugs...there are side effects. Prednisone is only going to help you IF you have some inflammation in your lungs...when I changed pulmonologist, he wanted to put me on prednisone to see if it would help me...there was no evidence of inflammation and I was against it...but, I told him I would do a short trial...I took it for 2 weeks...no difference....and I was able to come off fairly quickly. So, if you don't have inflammation, prednisone is not going to help you. Prednisone is not going to take away the scarring from PF. Prednisone has a lot of side effects...everything from causing diabetes, thinned skin, osteoprosis, weight gain.....and lots more. Our bodies produce a type of steroid naturally from the adrenal gland and pituitary gland...if we take prednisone, it signals the body to stop producing it...some of the problems of just stopping the prednisone are caused because our bodies aren't able to produce enough. I have a good friend, who is young, with bad asthma...she has taken prednisone for years...she has almost no cartlidge on the head of her femurs and she has a lot of trouble walking now...she's going to need hip replacements...the prednisone made her feel so much better when she took it...but now, it's caused damage in her hips. I've heard that some doctors prescribe prednisone to be taken every other day...this is supposed to allow the adrenal gland the ability to still produce on the day the prednisone isn't taken. I can't remember the title, but I read a book about a woman who was a cellist who had some illness and she was prescribed prednisone...her sister was a physician....the book was all about the side effects she had...there were a lot of psychological problems she had...the physician-sister wrote that she had prescribed prednisone for many of her patients, but she never realised how it could affect them. I'll have to look for the book and tell you the title. Diane Quinlandianequinlancomcast (DOT) netscoliosis/PF 8/04

[Guest guest]

http://www.olivija.com/prednisone/ http://www.transweb.org/reference/articles/drugs/pred.html http://members.tripod.com/noairtogo/prednisone.htm P UIP 8/00 58 yr oldJoyce wrote: , Almost everyone on this board has had experience with Prednisone. Those who have had thier dosage cut back drastically suffered severe side effects. My doctor took me down very, very slowly....about 5 or even 2 1/2 mgs at a time. Took some time but I did not notice any adverse reactions. I have been on prednisone for nine years but am on very low dosages now. It is difficult to go against your doctors orders and I certainly would not advise you to do that. I would ask her/him however why so drastic a cut back. I hope that or Diane sees your post. They are both nurses and may have a better answer. P. may have references with answers also. My prayers are with your family, Hugs, Joyce PF 1997>> Hello everyone,> I don't very often write in your group. I am a caregiver but came to > this group first. I came in with my husband just diagnosed and > couldn't find out much information. My husbands daughter also signed > up so she would kind of know from you all what her father was going > through. Thanks to, I believe Joyce, we are both a little nervous > about my husbands prednisone. She seemed to know her stuff. He was on > 20 twice a day. He went to the lung Dr. a week ago. The Dr.

was going > to do an x-ray but since there was no noticable change he decided to do > a ct scan. He changed his prednisone from the 40 a day to 20 a day. > Kara and I both feel that this is kind of drastic after listening to > everyone on this web site and some nurses that I know. Everyone says > that you need to be weened off the stuff. Is it a bad sign when you > hear they don't notice any changes and are doing a scan for more > definition and then his dose is cut so low? Any info from you all > would be appreciated.> >

Groups are talking. We´re listening. Check out the handy changes to Yahoo! Groups.

[Guest guest]

Thanks Grey...my dad asked for a perscription to get one and was told NO!Cyndi (Dad IPF12-05)jg singletary wrote: Diane, Post the title to book about prednisone. I would like to read it. I am kind of like someone I am talking to about the pain we are in or will be in with this stuff that will take us away from our world as we know it. I was shocked when I found out what I had lurking in my lungs. I do not want to live a long

time with severe pain and no way to get better. My dad was peralized from the neck down for 20 years before he died. The doctors never figured out exactly what was wrong so they labeled him with ALS. They had to label him with something to get insurance. He would beg me to shoot him????? Our family took care of him the best we could. Hello newbies wanted to give you some advice you did not ask for. Go to your search eng on your computer and type in oxygen meter and select one or more of the sites that come up. If you are sick enough to come to this web site you need a pulse oxygen meter. Ins and medicare will not pay for it. It measures your pulse and blood oxygen level. If your blood oxygen level is below 90 your body is being damaged from the poor job your lungs are doing getting oxygen to your body and you could be needing outside oxygen. This is good advice that I didn't get.

Knowledge is the key to longgevity with this lung stuff. Get educated quick about how to help yourself. Do not depend on the docs for everything. Let me know if I can help you. Grey 10/05 IPF Re: The rules of Prednisone I was in the middle of replying about the prednisone and had to stop. When I came back, my reply was gone...so

if you get half a reply, that's why...I wanted to try to answer some questions abut the prednisone....it's been around forever...and has helped countless numbers of people...however, just like most drugs...there are side effects. Prednisone is only going to help you IF you have some inflammation in your lungs...when I changed pulmonologist, he wanted to put me on prednisone to see if it would help me...there was no evidence of inflammation and I was against it...but, I told him I would do a short trial...I took it for 2 weeks...no difference....and I was able to come off fairly quickly. So, if you don't have inflammation, prednisone is not going to help you. Prednisone is not going to take away the scarring from PF. Prednisone has a lot of side effects...everything from causing diabetes, thinned skin, osteoprosis, weight gain.....and lots more. Our bodies produce a

type of steroid naturally from the adrenal gland and pituitary gland...if we take prednisone, it signals the body to stop producing it...some of the problems of just stopping the prednisone are caused because our bodies aren't able to produce enough. I have a good friend, who is young, with bad asthma...she has taken prednisone for years...she has almost no cartlidge on the head of her femurs and she has a lot of trouble walking now...she's going to need hip replacements...the prednisone made her feel so much better when she took it...but now, it's caused damage in her hips. I've heard that some doctors prescribe prednisone to be taken every other day...this is supposed to allow the adrenal gland the ability to still produce on the day the prednisone isn't taken. I can't remember the title, but I read a book about a woman who was a cellist who had some illness and she was prescribed prednisone...her sister was a physician....the book was all about the side effects she had...there were a lot of psychological problems she had...the physician-sister wrote that she had prescribed prednisone for many of her patients, but she never realised how it could affect them. I'll have to look for the book and tell you the title. Diane Quinlandianequinlancomcast (DOT) netscoliosis/PF 8/04

[Guest guest]

Cyndi, You can buy them on line. I paid 200.00 and it was worth every penny and more. You don't need a script. Just type oximeter in your search engine quite a few to choose from. I bought the orange one, it was the cheapest.. LOL. I bought from Medical the shipping was free at that time..God Bless

Peggy 09/04 ipf

Thanks Grey...my dad asked for a perscription to get one and was told NO!

Cyndi (Dad IPF12-05)

jg singletary wrote:

Diane, Post the title to book about prednisone. I would like to read it. I am kind of like someone I am talking to about the pain we are in or will be in with this stuff that will take us away from our world as we know it. I was shocked when I found out what I had lurking in my lungs. I do not want to live a long time with severe pain and no way to get better. My dad was peralized from the neck down for 20 years before he died. The doctors never figured out exactly what was wrong so they labeled him with ALS. They had to label him with something to get insurance. He would beg me to shoot him????? Our family took care of him the best we could. Hello newbies wanted to give you some advice you did not ask for. Go to your search eng on your computer and type in oxygen meter and select one or more of the sites that come up. If you are sick enough to come to this web site you need a pulse oxygen meter. Ins and medicare will not pay for it. It measures your pulse and blood oxygen level. If your blood oxygen level is below 90 your body is being damaged from the poor job your lungs are doing getting oxygen to your body and you could be needing outside oxygen. This is good advice that I didn't get. Knowledge is the key to longgevity with this lung stuff. Get educated quick about how to help yourself. Do not depend on the docs for everything. Let me know if I can help you. Grey 10/05 IPF

----- Original Message -----

To:

reply, that's why...I wanted to try to answer some questions abut

the prednisone....it's been around forever...and has helped

countless numbers of people...however, just like most drugs...there

are side effects. Prednisone is only going to help you IF you have

some inflammation in your lungs...when I changed pulmonologist, he

wanted to put me on prednisone to see if it would help me...there

was no evidence of inflammation and I was against it...but, I told

him I would do a short trial...I took it for 2 weeks...no

difference....and I was able to come off fairly quickly. So, if you

don't have inflammation, prednisone is not going to help you.

Prednisone is not going to take away the scarring from PF.

Prednisone has a lot of side effects...everything from causing

diabetes, thinned skin, osteoprosis, weight gain.....and lots more.

Our bodies produce a type of steroid naturally from the adrenal

gland and pituitary gland...if we take prednisone, it signals the

body to stop producing it...some of the problems of just stopping

the prednisone are caused because our bodies aren't able to produce

enough.

I have a good friend, who is young, with bad asthma...she has taken

prednisone for years...she has almost no cartlidge on the head of

her femurs and she has a lot of trouble walking now...she's going to

need hip replacements...the prednisone made her feel so much better

when she took it...but now, it's caused damage in her hips. I've

heard that some doctors prescribe prednisone to be taken every other

day...this is supposed to allow the adrenal gland the ability to

still produce on the day the prednisone isn't taken. I can't

remember the title, but I read a book about a woman who was a

cellist who had some illness and she was prescribed prednisone...her

sister was a physician....the book was all about the side effects

she had...there were a lot of psychological problems she had...the

physician-sister wrote that she had prescribed prednisone for many

of her patients, but she never realised how it could affect them.

I'll have to look for the book and tell you the title.

Diane Quinlan

dianequinlan@... <mailto:dianequinlan%40comcast.net>

scoliosis/PF 8/04

[Guest guest]

Thanks Peggy...I'm going to purchase one today for him. Have a great day! Cyndi (Dad IPF 12/05)Peggy wrote: Cyndi, You can buy them on line. I paid 200.00 and it was worth every penny and more. You don't need a script. Just type oximeter in your search engine quite a few to choose from. I bought the orange one, it was the cheapest.. LOL. I bought from Medical the shipping was free at that time..God Bless Peggy

09/04 ipf Thanks Grey...my dad asked for a perscription to get one and was told NO! Cyndi (Dad IPF12-05) jg singletary <jsingletarycarolina (DOT) rr.com> wrote: Diane, Post the title to book about prednisone. I would like to read it. I am kind of like someone I am talking to about the pain we are in or will be in with this stuff that will take us away from our world as we know it. I was shocked when I found out what I had lurking in my lungs. I do not want to live a long time with severe pain and no way to get better. My dad was peralized from the neck down for 20 years before he

died. The doctors never figured out exactly what was wrong so they labeled him with ALS. They had to label him with something to get insurance. He would beg me to shoot him????? Our family took care of him the best we could. Hello newbies wanted to give you some advice you did not ask for. Go to your search eng on your computer and type in oxygen meter and select one or more of the sites that come up. If you are sick enough to come to this web site you need a pulse oxygen meter. Ins and medicare will not pay for it. It measures your pulse and blood oxygen level. If your blood oxygen level is below 90 your body is being damaged from the poor job your lungs are doing getting oxygen to your body and you could be needing outside oxygen. This is good advice that I didn't get. Knowledge is the key to longgevity with this lung stuff. Get

educated quick about how to help yourself. Do not depend on the docs for everything. Let me know if I can help you. Grey 10/05 IPF ----- Original Message ----- From: Diane <mailto:dianequinlancomcast (DOT) net> To: reply, that's why...I wanted to try to answer some questions abut the prednisone....it's been around forever...and has helped countless numbers of people...however, just like most drugs...there are side effects. Prednisone is only going to help you IF you have some inflammation in your lungs...when I changed pulmonologist, he wanted to put me on prednisone to see if it would help me...there was no evidence of

inflammation and I was against it...but, I told him I would do a short trial...I took it for 2 weeks...no difference....and I was able to come off fairly quickly. So, if you don't have inflammation, prednisone is not going to help you. Prednisone is not going to take away the scarring from PF. Prednisone has a lot of side effects...everything from causing diabetes, thinned skin, osteoprosis, weight gain.....and lots more. Our bodies produce a type of steroid naturally from the adrenal gland and pituitary gland...if we take prednisone, it signals the body to stop producing it...some of the problems of just stopping the prednisone are caused because our bodies aren't able to produce enough. I have a good friend,

who is young, with bad asthma...she has taken prednisone for years...she has almost no cartlidge on the head of her femurs and she has a lot of trouble walking now...she's going to need hip replacements...the prednisone made her feel so much better when she took it...but now, it's caused damage in her hips. I've heard that some doctors prescribe prednisone to be taken every other day...this is supposed to allow the adrenal gland the ability to still produce on the day the prednisone isn't taken. I can't remember the title, but I read a book about a woman who was a cellist who had some illness and she was prescribed prednisone...her sister was a physician....the book was all about the side effects she had...there were a lot of

psychological problems she had...the physician-sister wrote that she had prescribed prednisone for many of her patients, but she never realised how it could affect them. I'll have to look for the book and tell you the title. Diane Quinlan dianequinlancomcast (DOT) net <mailto:dianequinlan%40comcast.net> scoliosis/PF 8/04

[Guest guest]

The title is "Coping with Prednisone". I just orederd a used copy for 6.00 on Amazon.com and am anxiously awaiting it. Diane wrote: I was in the middle of replying about the prednisone and had to stop. When I came back, my reply was gone...so if you get half a reply, that's why...I wanted to try to answer some questions abut the prednisone....it's been around forever...and has helped countless numbers of people...however, just like most

drugs...there are side effects. Prednisone is only going to help you IF you have some inflammation in your lungs...when I changed pulmonologist, he wanted to put me on prednisone to see if it would help me...there was no evidence of inflammation and I was against it...but, I told him I would do a short trial...I took it for 2 weeks...no difference....and I was able to come off fairly quickly. So, if you don't have inflammation, prednisone is not going to help you. Prednisone is not going to take away the scarring from PF. Prednisone has a lot of side effects...everything from causing diabetes, thinned skin, osteoprosis, weight gain.....and lots more. Our bodies produce a type of steroid naturally from the adrenal gland and pituitary gland...if we take prednisone, it signals the body to stop producing it...some of the problems of just stopping the prednisone are caused because

our bodies aren't able to produce enough. I have a good friend, who is young, with bad asthma...she has taken prednisone for years...she has almost no cartlidge on the head of her femurs and she has a lot of trouble walking now...she's going to need hip replacements...the prednisone made her feel so much better when she took it...but now, it's caused damage in her hips. I've heard that some doctors prescribe prednisone to be taken every other day...this is supposed to allow the adrenal gland the ability to still produce on the day the prednisone isn't taken. I can't remember the title, but I read a book about a woman who was a cellist who had some illness and she was prescribed prednisone...her sister was a physician....the book was all about the side effects she had...there were a lot of psychological problems she had...the physician-sister wrote that she had prescribed

prednisone for many of her patients, but she never realised how it could affect them. I'll have to look for the book and tell you the title. Diane Quinlan dianequinlancomcast (DOT) net scoliosis/PF 8/04 __________________________________________________

[Guest guest]

That;s the book....I'm glad you could get a copy of it. Thanks for posting

that, !

--

Diane Quinlan

dianequinlan@...

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

> The title is " Coping with Prednisone " . I just orederd a used copy for 6.00

on

> Amazon.com and am anxiously awaiting it.

>

> Diane wrote:

> I was in the middle of replying about the prednisone and had to

> stop. When I came back, my reply was gone...so if you get half a

> reply, that's why...I wanted to try to answer some questions abut

> the prednisone....it's been around forever...and has helped

> countless numbers of people...however, just like most drugs...there

> are side effects. Prednisone is only going to help you IF you have

> some inflammation in your lungs...when I changed pulmonologist, he

> wanted to put me on prednisone to see if it would help me...there

> was no evidence of inflammation and I was against it...but, I told

> him I would do a short trial...I took it for 2 weeks...no

> difference....and I was able to come off fairly quickly. So, if you

> don't have inflammation, prednisone is not going to help you.

> Prednisone is not going to take away the scarring from PF.

> Prednisone has a lot of side effects...everything from causing

> diabetes, thinned skin, osteoprosis, weight gain.....and lots more.

> Our bodies produce a type of steroid naturally from the adrenal

> gland and pituitary gland...if we take prednisone, it signals the

> body to stop producing it...some of the problems of just stopping

> the prednisone are caused because our bodies aren't able to produce

> enough.

> I have a good friend, who is young, with bad asthma...she has taken

> prednisone for years...she has almost no cartlidge on the head of

> her femurs and she has a lot of trouble walking now...she's going to

> need hip replacements...the prednisone made her feel so much better

> when she took it...but now, it's caused damage in her hips. I've

> heard that some doctors prescribe prednisone to be taken every other

> day...this is supposed to allow the adrenal gland the ability to

> still produce on the day the prednisone isn't taken. I can't

> remember the title, but I read a book about a woman who was a

> cellist who had some illness and she was prescribed prednisone...her

> sister was a physician....the book was all about the side effects

> she had...there were a lot of psychological problems she had...the

> physician-sister wrote that she had prescribed prednisone for many

> of her patients, but she never realised how it could affect them.

> I'll have to look for the book and tell you the title.

>

> Diane Quinlan

> dianequinlan@...

> scoliosis/PF 8/04

>

>

>

>

>

> __________________________________________________

>