Melly

[Guest guest]

I am sorry to hear all your going thru melly. Ill be watching for your posts. Am

hoping you have better news soon

Love

Liz

Sent from my Verizon Wireless 4G LTE DROID

[Guest guest]

Oh !

What a perfect description of how to change from 'bigger' to 'smaller' in

everything! Not just your size, but your intake of calories and your

increase of movement and sense of self. It is exactly what I have done/am

doing. Three years ago, at my son's wedding, I was taking 80mg of

prednisone, and I looked like, and felt like, a balloon! But, slowly,

slowly I was able to reduce the prednisone and the weight, mostly water,

started to come off. I think I weigh maybe twenty pounds less than I did

then. I am now on 8mg of the stuff, and have reduced my food intake, and

increased my exercise mostly by swimming. My cardiologist told me that if

I didn't get more regular exercise I would soon be diabetic. I took her

seriously and have been enjoying the pool. I won't walk for the sake of

walking, though. I wish I would, but I can't seem to force myself to do

it. I REALLY want a dog. I think that would help me get walking more

regularly. Our dear 'malatutant', Mable died several years ago, but my

husband is very resistant to getting a new dog. He wants to wait until he

retires (in 7years!), but I retired last month and don't think he's being

reasonable, but that's a whole new discussion !

Anyway, your plan, which isn't really a plan, but more a lifestyle change,

is really the only way to become healthier, more active, and on fewer

steroids as far as I know.

Good luck to us all in all our various stages of healing.

Peace and Blessings to everyone!

> **

>

>

> Dear Murali, Liz and others,

>

> I remember when I was on steroids the weight gain was very hard to deal

> with. It was depressing. As the medication was reduced I was able to lose

> weight. That was many years ago though and the weight gain was all from the

> medication/steroids at that time.

>

> 1995 was when I gained so much again I think it was a combination of

> circumstances that were the cause. One day I was at my rheumatologist

> appointment and the Tylenol Company had a booklet about diet and exercise

> for better health with arthritis. Perhaps I will write the company and see

> if they still have those books available. Anyway, some of the first

> suggestions were to start slowly cutting portions of food and moving with

> isometric movements for the joints sitting from your chair or lying in bed,

> house work even or walking to start. Something just clicked for me and I

> started working on it.

>

> First I started using one less spoon of sugar on things. Then only half a

> sandwich at a time. I didn’t eat out often because where I live and there

> isn’t fast food places but if I was where there were, I would only order

> the children size meal. I don’t drink sodas. I started eating at least a

> breakfast bar for the morning. The half sandwich for lunch. Small dinner

> plates with reduced amounts for dinner and eating earlier in the evenings.

> As I ate less my stomach didn’t need as much to feel full. Oh and more

> water especially a glass before dinner.

>

> Then I started doing Tai Chi, an oriental art form, for arthritis, I used

> Amazon the site for the CD’s and did it at least 3 times a week for just 10

> – 15 min at a time. I do not like to walk for exercise because it’s boring

> to me and often gets painful so I rode my bike a bit. I did leg lifts from

> my chair. The internet has some good sites to get arthritis exercises. They

> also have a site called the food pyramid by the US food and drug

> administration. It is wonderful and will take your information about size

> and weight and you enter what you eat ea. day and it will give you the

> nutrition information as well as how much activity is needed from what you

> eat to balance your activities. I also used the rubber stretch bands to

> help build strength in my arms and upper body. I also walk in the forest

> where I live and by the creeks because it’s more beautiful than just

> walking down a street for me. Each month I started losing a little at a

> time. I did have a spell of gastric inflammation so couldn’t eat much but

> yogurt and soups for a while but that was on and off. My doctor changed my

> medications for the condition and it got better. It took over two years to

> lose enough for a healthy weight for my height. YOU MUST TALK TO YOUR

> DOCTOR FOR HIS/HER RECOMMENDATIONS BEFORE YOU START ANY FOOD AND EXERCIZE

> PLAN. I’ve never thought of it as dieting. Just a healthy lifestyle of

> eating and moving. I really don’t believe in dieting because it puts extra

> pressure and failure feelings on me if I don’t lose. I also have deserts if

> I want but not a lot. I don’t keep sugar and snack foods in the house but

> buy them occasionally if I want them. I don’t get on my scales but maybe

> once a month or when I go to the doctors.

>

> I hope any of my experiences help others but it is just what has worked

> for me. Each person has different medications and degrees of illness and so

> what works for one may not be the same for others.

>

> If we share how we are doing then maybe it will help. The foundation also

> has FREE informational brochures about Still’s disease and you may ask for

> some by emailing Bob at oldgoat378@... <javascript:_e({}, 'cvml',

> 'oldgoat378%40knology.net');> sending your request with your name and

> postal address.

>

> Good wishes,

>

> From: Murali Dutt

> Subject: Re:

>

> hi group

>

> Would like to know how to reduce the weight which i am gaining due to

> cortico steroid. Hope someone can help me

>

>

[Guest guest]

Let me know what you find! I was 232 when I first got sick and fell to

208 3 months later. As soon as i was diagnosed and placed on high dose

steroids I gained 57 lbs in 60 days! Now I'm hanging around 290, which is a

full 90 - 100 pounds too much now that I can't lift.

> Oh !

> What a perfect description of how to change from 'bigger' to 'smaller' in

> everything! Not just your size, but your intake of calories and your

> increase of movement and sense of self. It is exactly what I have done/am

> doing. Three years ago, at my son's wedding, I was taking 80mg of

> prednisone, and I looked like, and felt like, a balloon! But, slowly,

> slowly I was able to reduce the prednisone and the weight, mostly water,

> started to come off. I think I weigh maybe twenty pounds less than I did

> then. I am now on 8mg of the stuff, and have reduced my food intake, and

> increased my exercise mostly by swimming. My cardiologist told me that if

> I didn't get more regular exercise I would soon be diabetic. I took her

> seriously and have been enjoying the pool. I won't walk for the sake of

> walking, though. I wish I would, but I can't seem to force myself to do

> it. I REALLY want a dog. I think that would help me get walking more

> regularly. Our dear 'malatutant', Mable died several years ago, but my

> husband is very resistant to getting a new dog. He wants to wait until he

> retires (in 7years!), but I retired last month and don't think he's being

> reasonable, but that's a whole new discussion !

> Anyway, your plan, which isn't really a plan, but more a lifestyle change,

> is really the only way to become healthier, more active, and on fewer

> steroids as far as I know.

> Good luck to us all in all our various stages of healing.

> Peace and Blessings to everyone!

>

>

>

> > **

> >

> >

> > Dear Murali, Liz and others,

> >

> > I remember when I was on steroids the weight gain was very hard to deal

> > with. It was depressing. As the medication was reduced I was able to lose

> > weight. That was many years ago though and the weight gain was all from

> the

> > medication/steroids at that time.

> >

> > 1995 was when I gained so much again I think it was a combination of

> > circumstances that were the cause. One day I was at my rheumatologist

> > appointment and the Tylenol Company had a booklet about diet and exercise

> > for better health with arthritis. Perhaps I will write the company and

> see

> > if they still have those books available. Anyway, some of the first

> > suggestions were to start slowly cutting portions of food and moving with

> > isometric movements for the joints sitting from your chair or lying in

> bed,

> > house work even or walking to start. Something just clicked for me and I

> > started working on it.

> >

> > First I started using one less spoon of sugar on things. Then only half a

> > sandwich at a time. I didn’t eat out often because where I live and there

> > isn’t fast food places but if I was where there were, I would only order

> > the children size meal. I don’t drink sodas. I started eating at least a

> > breakfast bar for the morning. The half sandwich for lunch. Small dinner

> > plates with reduced amounts for dinner and eating earlier in the

> evenings.

> > As I ate less my stomach didn’t need as much to feel full. Oh and more

> > water especially a glass before dinner.

> >

> > Then I started doing Tai Chi, an oriental art form, for arthritis, I used

> > Amazon the site for the CD’s and did it at least 3 times a week for just

> 10

> > – 15 min at a time. I do not like to walk for exercise because it’s

> boring

> > to me and often gets painful so I rode my bike a bit. I did leg lifts

> from

> > my chair. The internet has some good sites to get arthritis exercises.

> They

> > also have a site called the food pyramid by the US food and drug

> > administration. It is wonderful and will take your information about size

> > and weight and you enter what you eat ea. day and it will give you the

> > nutrition information as well as how much activity is needed from what

> you

> > eat to balance your activities. I also used the rubber stretch bands to

> > help build strength in my arms and upper body. I also walk in the forest

> > where I live and by the creeks because it’s more beautiful than just

> > walking down a street for me. Each month I started losing a little at a

> > time. I did have a spell of gastric inflammation so couldn’t eat much but

> > yogurt and soups for a while but that was on and off. My doctor changed

> my

> > medications for the condition and it got better. It took over two years

> to

> > lose enough for a healthy weight for my height. YOU MUST TALK TO YOUR

> > DOCTOR FOR HIS/HER RECOMMENDATIONS BEFORE YOU START ANY FOOD AND EXERCIZE

> > PLAN. I’ve never thought of it as dieting. Just a healthy lifestyle of

> > eating and moving. I really don’t believe in dieting because it puts

> extra

> > pressure and failure feelings on me if I don’t lose. I also have deserts

> if

> > I want but not a lot. I don’t keep sugar and snack foods in the house but

> > buy them occasionally if I want them. I don’t get on my scales but maybe

> > once a month or when I go to the doctors.

> >

> > I hope any of my experiences help others but it is just what has worked

> > for me. Each person has different medications and degrees of illness and

> so

> > what works for one may not be the same for others.

> >

> > If we share how we are doing then maybe it will help. The foundation also

> > has FREE informational brochures about Still’s disease and you may ask

> for

> > some by emailing Bob at oldgoat378@... <javascript:_e({},

> 'cvml',

> > 'oldgoat378%40knology.net');> sending your request with your name and

> > postal address.

> >

> > Good wishes,

> >

> > From: Murali Dutt

> > Subject: Re:

> >

> > hi group

> >

> > Would like to know how to reduce the weight which i am gaining due to

> > cortico steroid. Hope someone can help me

> >

> >

[Guest guest]

HI ,

I had such a big fear of steroids because of the weight gain. When I was

starting them my rheumatologist told me to exercise. I thought how can I when

my knees hurt so bad? Well the steroids did help with that and I have made a

point to walk at least 5 days a week. I started at 20 minutes and am now up to

45-60 minutes each time. I put on my bluetooth and chat with friends or take

one of the dogs so I am occupied and keep from being bored. I also check out

different places to walk.

I am looking into exercises of something for my core area as the pred still sits

there but I haven't gained much more than 5 pounds. I, also, recently quit

smoking which I thought was going to put on 20 pounds too. I am shocked that I

am not 50 pounds more, to be quite honest.

What I eat makes a big difference too. I eat a lot of fruit and veggies. Lots

of fiber, very little bread or pasta. I do eat meat and nuts. It's just not

eating like an " American " , lol. Not much or any in the way of fast foods or

processed foods. Portion control is really important too.

I am down from 40 mg to 10 mg of pred and soon will start to work on going down

from that.

Overall, I feel much better and just shadows of flares. My knees may hurt a bit

for a day or two, don't do well with fans or anything that can affect my throat

still.

There is no doubt it is a lot of work and everyday is work but I am rather proud

of myself, lol.

Anyone I can help or be there for, let me know.

a

From:

Sent: Saturday, August 04, 2012 2:17 PM

To: Stillsdisease

Subject: Re: Re:

Dear Murali, Liz and others,

I remember when I was on steroids the weight gain was very hard to deal with. It

was depressing. As the medication was reduced I was able to lose weight. That

was many years ago though and the weight gain was all from the

medication/steroids at that time.

1995 was when I gained so much again I think it was a combination of

circumstances that were the cause. One day I was at my rheumatologist

appointment and the Tylenol Company had a booklet about diet and exercise for

better health with arthritis. Perhaps I will write the company and see if they

still have those books available. Anyway, some of the first suggestions were to

start slowly cutting portions of food and moving with isometric movements for

the joints sitting from your chair or lying in bed, house work even or walking

to start. Something just clicked for me and I started working on it.

First I started using one less spoon of sugar on things. Then only half a

sandwich at a time. I didn’t eat out often because where I live and there

isn’t fast food places but if I was where there were, I would only order the

children size meal. I don’t drink sodas. I started eating at least a breakfast

bar for the morning. The half sandwich for lunch. Small dinner plates with

reduced amounts for dinner and eating earlier in the evenings. As I ate less my

stomach didn’t need as much to feel full. Oh and more water especially a glass

before dinner.

Then I started doing Tai Chi, an oriental art form, for arthritis, I used Amazon

the site for the CD’s and did it at least 3 times a week for just 10 – 15

min at a time. I do not like to walk for exercise because it’s boring to me

and often gets painful so I rode my bike a bit. I did leg lifts from my chair.

The internet has some good sites to get arthritis exercises. They also have a

site called the food pyramid by the US food and drug administration. It is

wonderful and will take your information about size and weight and you enter

what you eat ea. day and it will give you the nutrition information as well as

how much activity is needed from what you eat to balance your activities. I also

used the rubber stretch bands to help build strength in my arms and upper body.

I also walk in the forest where I live and by the creeks because it’s more

beautiful than just walking down a street for me. Each month I started losing a

little at a time. I did have a spell of gastric inflammation so couldn’t eat

much but yogurt and soups for a while but that was on and off. My doctor changed

my medications for the condition and it got better. It took over two years to

lose enough for a healthy weight for my height. YOU MUST TALK TO YOUR DOCTOR FOR

HIS/HER RECOMMENDATIONS BEFORE YOU START ANY FOOD AND EXERCIZE PLAN. I’ve

never thought of it as dieting. Just a healthy lifestyle of eating and moving. I

really don’t believe in dieting because it puts extra pressure and failure

feelings on me if I don’t lose. I also have deserts if I want but not a lot. I

don’t keep sugar and snack foods in the house but buy them occasionally if I

want them. I don’t get on my scales but maybe once a month or when I go to the

doctors.

I hope any of my experiences help others but it is just what has worked for me.

Each person has different medications and degrees of illness and so what works

for one may not be the same for others.

If we share how we are doing then maybe it will help. The foundation also has

FREE informational brochures about Still’s disease and you may ask for some by

emailing Bob at oldgoat378@... sending your request with your name and

postal address.

Good wishes,

From: Murali Dutt

Subject: Re:

hi group

Would like to know how to reduce the weight which i am gaining due to cortico

steroid. Hope someone can help me

[Guest guest]

Hi Murali,

That's a large dose 80mg you said?  Yep, it will certainly cause weight gain. 

The only thing I have found which helps is to keep moving. Walking, pool water

therapy, what ever your capabilities.  And corticosteroids increase appetite,

so for me it's been best with no sugar, no sodas, no cookies, no snacks, just

meals with protein and veggies, and some fruit, drink lots of water. It is hard

work, but even on steroids I could stay skinny at one time, but not lately. I'm

in a flare from other disease, my daughter is the one with Still's and I'm dead

in the water tired so moving around is not an option so I lay her fat fat fat.

good Luck to you.

>To: " Stillsdisease " <Stillsdisease >

>Sent: Saturday, August 4, 2012 4:35 AM

>Subject: Re:

>

>

> 

>hi group

> 

>Would like to know how to reduce the weight which i am gaining due to cortico

steroid.  I have been diagioned with Still disease 2 months ago and now on 80mg

of cortico.

> 

>Hope someone can help me

>

>

[Guest guest]

Wow, a,

Good for you! It certainly sounds like you have things under control!

Sounds like you're doing it the 'right' way, too... everyone has to figure

out what their 'right way' is, I think, but your enthusiasm is certainly

contagious! I feel better about my little efforts reading what you've been

able to accomplish.

love to all,

*Holly *

*hollydorst@...*

*

*

On Sat, Aug 4, 2012 at 4:40 PM, Butterfly Chaser <

butterflychaser999@...> wrote:

> **

>

>

> Hi Murali,

> That's a large dose 80mg you said? Yep, it will certainly cause weight

> gain. The only thing I have found which helps is to keep moving. Walking,

> pool water therapy, what ever your capabilities. And corticosteroids

> increase appetite, so for me it's been best with no sugar, no sodas, no

> cookies, no snacks, just meals with protein and veggies, and some fruit,

> drink lots of water. It is hard work, but even on steroids I could stay

> skinny at one time, but not lately. I'm in a flare from other disease, my

> daughter is the one with Still's and I'm dead in the water tired so moving

> around is not an option so I lay her fat fat fat. good Luck to you.

>

>

>

> >To: " Stillsdisease " <Stillsdisease >

> >Sent: Saturday, August 4, 2012 4:35 AM

> >Subject: Re:

>

> >

> >

> >

> >hi group

> >

> >Would like to know how to reduce the weight which i am gaining due to

> cortico steroid. I have been diagioned with Still disease 2 months ago and

> now on 80mg of cortico.

> >

> >Hope someone can help me

> >

> >