Re: Diet and exercise after Dx

[Guest guest]

Donna here:

Predisone also causes people to become diabetic. Last year when I was

hospitalized they had to give me insulin because the blood sugar was so high.

I hate the predisone. My face is too big for my body, however, my body is

starting to catch up with my face. It also really effects my mood. When I

am on 50 or more mg. I don't even drive my car because I have an

overwhelming urge to see the faces of those individuals that are not driving

according to my specifications. I also cant go to any department stores

because feel very appropriate opening packages and spreading rugs and other

household items in the isles and asking complete strangers for their opinion

about my selections and at which time I inform them that my face is actually

larger that it's normal size. My son absolutely refuses to go out in public

with me when I am on prednisone. Prednisone also causes me to obsess with

coupons and the need to do comparison shopping using math to figure the best

deal and then to share this information with all the other customers, even

ones who don't want this help. When I was on 80 mg I went so far as to look

in strangers baskets and question them on their selections. This took place

while I was coughing and then barking. Do any of you have a barking sounding

cough? While this is going on I am also peeing my pants because of the

coughing stress.

These are side effects that I have not seen listed in the medical

precautions. Has anyone else

practiced in appropriate behavior while on the prednisone?

[Guest guest]

Donna CA here:

I find the description of your madness comforting and madness does love

company.

I have learned that I should not go out in public with a chaperon as my

behavior seems so reasonable to me at the time. I trust those who have

informed me that my reasoning ability is impaired and wait for assistance.

I really enjoyed hearing about your shopping stories. I found that some of my

purchases are questionable. I recently bought in excess of twenty boxes of

cereal,

they were on sale and I had coupons to go with the sale price. I have also

bought several items of clothing that are the same except they ranges in

sizes, 8-10-12.

I decided that just in case I gain weight I should have a larger size and

then in case I loosed weight I should have the smaller size. Predisone does

encourage one to be prepared.

I am being to wonder if the boy scout master may have been a recipient of

prednisone.

I also have a real need to go up to strangers and talk to them. Has this

happened to

you?

Also, when I was a little younger and pre medications days I could have been

considered somewhat attractive and having always enjoyed flirting. I find

myself flirting with people forgetting that I am now old and have moon face,

thinning hair, swollen gums and teeth, which they cant see but I have false

teeth and the swelling does sometimes interfere with speech. I m not used

the fact that my targets don't seemed to be flattered by my interest. I have

to remind myself one is coughing barking and peeing when they are flirting

that they better look pretty good.

Fortunately, my boyfriend thinks that I am attractive anyway. I think that

he just doesn't notice because he is of the male species and has the pre set

disposition not

to notice woman that he has already had.

I as glad to have found someone that seems to have the ability to see the

humorous

side of side as I find that it is the best therapy for me.

Glad your in the group

Donna

[Guest guest]

Donna:

Your experience with Prednisone was not too dissimilar to my own back in

1993. I was on 120 mg/day for about 4 months to stave off profound

deafness. Your mention of the grocery store triggered many memories for me.

I was on disability leave at the time and remember spending about 5 hours a

day roaming the grocery store with lists and reading labels on all the

foods. I was so completely unable to make decisions, I often stood

contemplating which of two identical cans of soup I should purchase. My

poor wife would come home from work and find that I purchased either 5

watermelons and nothing else, or one of every type of vegetable or fruit in

the store -- that means one green bean, one pea, one banana, one apple, one

mango, ...). There was no reason to my madness.

After recognizing how insane my behavior was, but knowing I could not alter

it without reduction in the meds, I decided to spend my days at the library

-- there are often plenty of other " freaks " there too. It was " fun "

randomly roaming the aisles and pulling out various books. I couldn't read

them, unfortunately because I couldn't remember more than a page of what I

had read at a time. But it occupied my sedated, sometimes euphoric, brain.

In general, those levels of Prednisone for me made it such that I could only

concentrate on a topic for about 15 seconds before forgetting what I was

doing. in some regards this was good, as it forbade me from focusing on the

fact that I was completely deaf -- a certainly depressing situation.

I was off Prednisone for 7 years until this week. My biggest fear now is

that I'll head back to the drug induced psychosis. I recall the package

insert (FDA labeling) made note that a potential side effect was psychotic

episodes. That certainly rang true for me.

-Doug

[Guest guest]

Hi veronica here, I have medically induced diabetes. I take 18units of Insulin 70/30 and the Regular only when needed. But i watch what i eat, sometimes i dont have to take my morning shot or any insulin at all. But yes i do have diabetes because of the prednisone.

Re: Diet and exercise after Dx

From: okerdo@... Donna here:Predisone also causes people to become diabetic. Last year when I was hospitalized they had to give me insulin because the blood sugar was so high.I hate the predisone. My face is too big for my body, however, my body is starting to catch up with my face. It also really effects my mood. When I am on 50 or more mg. I don't even drive my car because I have an overwhelming urge to see the faces of those individuals that are not driving according to my specifications. I also cant go to any department stores because feel very appropriate opening packages and spreading rugs and other household items in the isles and asking complete strangers for their opinion about my selections and at which time I inform them that my face is actually larger that it's normal size. My son absolutely refuses to go out in public with me when I am on prednisone. Prednisone also causes me to obsess with coupons and the need to do comparison shopping using math to figure the best deal and then to share this information with all the other customers, even ones who don't want this help. When I was on 80 mg I went so far as to look in strangers baskets and question them on their selections. This took place while I was coughing and then barking. Do any of you have a barking sounding cough? While this is going on I am also peeing my pants because of the coughing stress.These are side effects that I have not seen listed in the medical precautions. Has anyone elsepracticed in appropriate behavior while on the prednisone?

hi and welcome. maybe we can come up with answers that our doctors can't

[Guest guest]

Thank You for your message. It helps to have someone else with this disease

to list symptoms the experience. That way I can compare what my body is

doing to every one else with this disease. You spoke of swollen gums. I have

been fighting that for years. I see my dentist regularly for cleanings and

when I was younger my dentist treated me unfairly because of the irritation.

he scolded me that I didn't brush my teeth. I was in my teens at that time.

My mother told him I brush two sometimes three times daily and that I kept

good care of my teeth. Is swollen, red gums part of this disease??? Has any

one else had this problem??? I have used every medicated mouth was

available, even prescription ones.Thank you and God Bless.

Tammy F.

Re: Diet and exercise after Dx

>From: okerdo@...

>

>Donna CA here:

>I find the description of your madness comforting and madness does love

>company.

>

>I have learned that I should not go out in public with a chaperon as my

>behavior seems so reasonable to me at the time. I trust those who have

>informed me that my reasoning ability is impaired and wait for assistance.

>

>I really enjoyed hearing about your shopping stories. I found that some of

my

>purchases are questionable. I recently bought in excess of twenty boxes of

>cereal,

>they were on sale and I had coupons to go with the sale price. I have also

>bought several items of clothing that are the same except they ranges in

>sizes, 8-10-12.

>I decided that just in case I gain weight I should have a larger size and

>then in case I loosed weight I should have the smaller size. Predisone does

>encourage one to be prepared.

>I am being to wonder if the boy scout master may have been a recipient of

>prednisone.

>

>I also have a real need to go up to strangers and talk to them. Has this

>happened to

>you?

>

>Also, when I was a little younger and pre medications days I could have

been

>considered somewhat attractive and having always enjoyed flirting. I find

>myself flirting with people forgetting that I am now old and have moon

face,

>thinning hair, swollen gums and teeth, which they cant see but I have false

>teeth and the swelling does sometimes interfere with speech. I m not used

>the fact that my targets don't seemed to be flattered by my interest. I

have

>to remind myself one is coughing barking and peeing when they are flirting

>that they better look pretty good.

>Fortunately, my boyfriend thinks that I am attractive anyway. I think that

>he just doesn't notice because he is of the male species and has the pre

set

>disposition not

>to notice woman that he has already had.

>

>I as glad to have found someone that seems to have the ability to see the

>humorous

>side of side as I find that it is the best therapy for me.

>

>Glad your in the group

>Donna

>

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

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>

>hi and welcome. maybe we can come up with answers that our doctors can't

>

[Guest guest]

Hi ,

I don't do regular exercise for RP but I will start

soon to get my body in shape for a charity walk I'm

doing Arpil 29th. It's a 2 mile fun walk to benefit

our local Pregnancy Clinic. I've got almost $150.00 in

sponsorships! I did this the first time last year and

want to continue doing it each year that I can. So I

usually walk after work at least 3 nights a week. Two

miles doesn't sound like very far but when you're not

used to it, it can get tiring! It is a very worthwhile

event. My paster and I have a little competition going

on the sponsorships. Last year he beat me by almost

$100.00 so this year I gotta get going! I remember

last year I got pretty sick after it, but like I said

it is a very worthwhile event.

Nancie

--- Hob@... wrote:

>

> << Has anyone approached their long term medical

> management through diet and

> exercise as a way to compliment / minimize the

> medical regimen? >>

>

> Diet is a problem for people on prednisone -- some

> of us can get pretty

> hungry and it is very difficult to control the urge

> to eat. Prednisone will

> take your body fat and redeposit it around your

> face, neck, shoulders and

> tummy. If you are a lean person you may have less

> of a problem with that but

> it might be a good idea to make sure that your fat

> intake is watched a little.

>

> I don't know what happens with people on NSAIDs --

> if hunger is a problem.

> They can cause stomach upset that might make someone

> want to eat. Other meds

> that cause stomach problems may also fit that

> category. The most obvious

> solution would be to include something to settle the

> stomach with other meds

> if that is feasible.

>

> It might also be a good idea to watch your sugar

> intake because a number of

> RP patients seem to get diabetes -- with the weight

> gain. I don't know if

> those who get it are only on an anti-inflammatory

> like prednisone or if they

> are also taking immuno-suppressants before they get

> it. Some of the listers

> have diabetes. Maybe they have advice about that.

> One lister reported

> being on a very low calorie diet because of diabetes

> and really suffering

> from hunger pangs...haven't heard recently how she

> is doing on that diet.

> Hope she has lost some weight and is able to stick

> with the diet!!

>

> Maybe in the future someone will think it is

> important to come up with a

> nutrition plan for RP patients to help them manage

> their own weight gain and

> maybe avoid diabetes. If you think about it, it is

> really unkind for a

> doctor to tell you you probably are going to feel

> very hungry and gain weight

> on prednisone without offering you any advise about

> how to control it at

> least a little.

>

> Some doctors are actually a little relieved to see

> an RP patient gain weight.

> Some patients are so sick when they are finally

> diagnosed that it takes a

> long time for their bodies to heal enough for them

> to put on any weight no

> matter how much they eat. When they finally began

> to gain without special

> supplements it is taken as a sign that they are

> getting better. First the

> failure to gain is alarming, later the problem may

> be to control the gain.

>

> People on high dose of prednisone should not do

> strenuous exercise per my

> Rheumy and my Pulmonologist. The large muscles are

> weakend by the drug and

> you have all to do to manage rotations on a

> stationary bike with lowest work

> load setting. They told me 1) not to lift anything

> over 5 pounds 2) do

> more rotations on bike rather than increase the work

> load 3) never do

> crunches/situps for abs.

>

> They emphasized that straining a muscle weakened by

> pred. can cause permanent

> damage.

>

> They also said that aerobic workouts are good for

> the lungs/heart as long as

> those organs are not stressed by the disease. They

> said that the stationary

> bike is good for conditioning leg muscles, some

> aerobic benefits, and arm and

> back strength if you have one with moving

> handlebars. What they like about

> it is that it puts minimum impact on joints. It is

> important to find

> exercises that will not cause joint problems.

>

> The warnings about muscle damage from strain were

> when I was at 60-20 mg.

> Now that I am on 12.5 mg I can do any exercise I

> want to do. They also said

> that doing the light exercise while on higher doses

> of prednisone was very

> important for keeping enough tone in the muscles so

> that they come back more

> quickly when the patient can return to a normal type

> of exercise.

>

> H.

>

=====

" A real friend is one who walks in when the rest of the world walks out. "

__________________________________________________

[Guest guest]

,

Like you, I didn't realize that exercise could do

damage to our muscles and bones. Although like I said

I haven't done much of anything for a long time. But I

used to (once a very long time ago almost like another

life time) I used to play competition soccer both

indoors and outdoors. Did that for years! But alas had

to stop because of injuries to the knee-actually about

8 or 9 surgeries later! I will be very careful on my

walk.

By the way if anyone would like to sponsor me - keep

in mind that this will benefit our local pregnancy

clinic only this is not a nationwide clinic- I have to

turn all monies in on April 29th- the day of the walk.

So send your check made out to Ramona Pregnancy Care

Clinic or R.P.C.C. and send it to; Nancie Legge 905

" B " Street #1 Ramona, California 92065. Since this

is a charitable facility I believe this could be tax

deductible. No pressure I understand if you say, no

way it's not for my area. Just thought I'd ask. Let

me know if this is a tacky thing to be doing on the

board and I won't do it again.

Thanks Nancie

--- Harvey

wrote:

> again, My doctors encourage me to continue

> exercise program weekly. I do cardio and lift light

> weights. I didn't know you could do damage to the

> muscle. I knew that prednisone made them weak. But

> i thought if i keep working out that i would keep

> the muscle strong. I dont know. Bye

> Re: Diet and exercise

> after Dx

>

>

>

>

> Hi ,

> I don't do regular exercise for RP but I will

> start

> soon to get my body in shape for a charity walk

> I'm

> doing Arpil 29th. It's a 2 mile fun walk to

> benefit

> our local Pregnancy Clinic. I've got almost

> $150.00 in

> sponsorships! I did this the first time last year

> and

> want to continue doing it each year that I can. So

> I

> usually walk after work at least 3 nights a week.

> Two

> miles doesn't sound like very far but when you're

> not

> used to it, it can get tiring! It is a very

> worthwhile

> event. My paster and I have a little competition

> going

> on the sponsorships. Last year he beat me by

> almost

> $100.00 so this year I gotta get going! I remember

> last year I got pretty sick after it, but like I

> said

> it is a very worthwhile event.

> Nancie

>

> --- Hob@... wrote:

> >

> > << Has anyone approached their long term medical

> > management through diet and

> > exercise as a way to compliment / minimize the

> > medical regimen? >>

> >

> > Diet is a problem for people on prednisone --

> some

> > of us can get pretty

> > hungry and it is very difficult to control the

> urge

> > to eat. Prednisone will

> > take your body fat and redeposit it around your

> > face, neck, shoulders and

> > tummy. If you are a lean person you may have

> less

> > of a problem with that but

> > it might be a good idea to make sure that your

> fat

> > intake is watched a little.

> >

> > I don't know what happens with people on NSAIDs

> --

> > if hunger is a problem.

> > They can cause stomach upset that might make

> someone

> > want to eat. Other meds

> > that cause stomach problems may also fit that

> > category. The most obvious

> > solution would be to include something to settle

> the

> > stomach with other meds

> > if that is feasible.

> >

> > It might also be a good idea to watch your sugar

> > intake because a number of

> > RP patients seem to get diabetes -- with the

> weight

> > gain. I don't know if

> > those who get it are only on an

> anti-inflammatory

> > like prednisone or if they

> > are also taking immuno-suppressants before they

> get

> > it. Some of the listers

> > have diabetes. Maybe they have advice about

> that.

> > One lister reported

> > being on a very low calorie diet because of

> diabetes

> > and really suffering

> > from hunger pangs...haven't heard recently how

> she

> > is doing on that diet.

> > Hope she has lost some weight and is able to

> stick

> > with the diet!!

> >

> > Maybe in the future someone will think it is

> > important to come up with a

> > nutrition plan for RP patients to help them

> manage

> > their own weight gain and

> > maybe avoid diabetes. If you think about it, it

> is

> > really unkind for a

> > doctor to tell you you probably are going to

> feel

> > very hungry and gain weight

> > on prednisone without offering you any advise

> about

> > how to control it at

> > least a little.

> >

> > Some doctors are actually a little relieved to

> see

> > an RP patient gain weight.

> > Some patients are so sick when they are finally

> > diagnosed that it takes a

> > long time for their bodies to heal enough for

> them

> > to put on any weight no

> > matter how much they eat. When they finally

> began

> > to gain without special

> > supplements it is taken as a sign that they are

> > getting better. First the

> > failure to gain is alarming, later the problem

> may

> > be to control the gain.

> >

> > People on high dose of prednisone should not do

> > strenuous exercise per my

> > Rheumy and my Pulmonologist. The large muscles

> are

> > weakend by the drug and

> > you have all to do to manage rotations on a

> > stationary bike with lowest work

> > load setting. They told me 1) not to lift

> anything

> > over 5 pounds 2) do

> > more rotations on bike rather than increase the

> work

> > load 3) never do

> > crunches/situps for abs.

> >

> > They emphasized that straining a muscle weakened

> by

> > pred. can cause permanent

> > damage.

> >

> > They also said that aerobic workouts are good

> for

> > the lungs/heart as long as

> > those organs are not stressed by the disease.

> They

> > said that the stationary

> > bike is good for conditioning leg muscles, some

> > aerobic benefits, and arm and

> > back strength if you have one with moving

> > handlebars. What they like about

> > it is that it puts minimum impact on joints.

> It is

> > important to find

> > exercises that will not cause joint problems.

> >

> > The warnings about muscle damage from strain

> were

> > when I was at 60-20 mg.

> > Now that I am on 12.5 mg I can do any exercise I

> > want to do. They also said

> > that doing the light exercise while on higher

> doses

> > of prednisone was very

> > important for keeping enough tone in the muscles

> so

> > that they come back more

> > quickly when the patient can return to a normal

> type

> > of exercise.

> >

> > H.

> >

>

> =====

> " A real friend is one who walks in when the rest

> of the world walks out. "

>

> __________________________________________________

>