Weight Gain

[Guest guest]

would eat box after box of cereal. Still to this day if she wants

a snack, she will have a bowl of cereal. She does prefer the sweetened

cereal or Honey nut Cheerios. She also used to eat the Ritz snack crackers

that come in a roll of crackers. She would eat one whole roll at a sitting.

She is a good eater. She is in the 95% height and weight. I keep telling

her that if she didn't have cf that she would be a little fatty like the

rest of the family. She just laughs. She loves food and eats allot.

Tina W., mother of 18yo wcf

Re: Weight Gain

Weight gain was very stressful for us from 6-10 months at least. The other

comments on the list are correct, though, they can surprise you in what they

will try or like. I had a fruit plate at a restaurant and Henry wanted some.

I cut the fruit in little tiny squares and he basically ate all my food. We

were in the " give him fat " mode and we initially gave him foods that we

thought might put weight on him. He still prefers meals of fresh fruit,

particularly strawberries. If we are traveling, I make sure to have some in

a cooler so he has something I know he will eat. He has been in the 90th

percentile primarily and french fries are his favorite food, but he

otherwise eats wheat toast, bagels with cream cheese, crackers and fruit.

Our nutritionist always suggested three things: oatmeal, chicken and noodle

casserole and spaghetti. Henry doesn't eat any of these. We were told to

give him a variety of foods on a plate or surface and let him decide.

Sometimes he eats rice cakes or rice krispies. He is happy as a clam sitting

eating rice krispies with a spoon. He makes a face if you add milk. However,

he will eat all of his dad's gorilla munch cereal with milk directly from a

bowl with a big spoon. I do think it is important to not push them.

mom to Henry 2 wcf

[Guest guest]

also loves to eat. However her favorite foods are broccoli and

cheese, turkey breast, fruit, rice, all the healthy, no-fat stuff.

This gets very frustrating because she does not like the high

fat/cal foods. If I was not there when she was born, I'd swear she

did not belong to me We don't get birthday cakes anymore because

I am the one who ends up eating them. So now we do birthday pie.

This child does not " snack " . oh no, her idea of a snack is a pot of

corn, some uncle ben's rice with a side of sliced ham. All things

that I have to COOK! Drives me crazy! I get caught saying, " ,

find something I don't have to cook " , but then I stop and think "

but wait, we need her to eat, so yes you have to cook " . And yes, I

do have conversations with myself

EVERYBODY HAVE A GREAT DAY!!!!

e

[Guest guest]

e,

You are not having a conversation with yourself! You are talking to all of

us. The nice thing about our kids getting older is we can teach them to

cook. Then you can take turns cooking and it doesn't get to be such a drag.

Have a great day!

Tina W.

Re: Weight Gain

also loves to eat. However her favorite foods are broccoli and

cheese, turkey breast, fruit, rice, all the healthy, no-fat stuff.

This gets very frustrating because she does not like the high

fat/cal foods. If I was not there when she was born, I'd swear she

did not belong to me We don't get birthday cakes anymore because

I am the one who ends up eating them. So now we do birthday pie.

This child does not " snack " . oh no, her idea of a snack is a pot of

corn, some uncle ben's rice with a side of sliced ham. All things

that I have to COOK! Drives me crazy! I get caught saying, " ,

find something I don't have to cook " , but then I stop and think "

but wait, we need her to eat, so yes you have to cook " . And yes, I

do have conversations with myself

EVERYBODY HAVE A GREAT DAY!!!!

e

-------------------------------------------

The opinions and information exchanged on this list should IN NO WAY

be construed as medical advice.

PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS.

------------------------------------

[Guest guest]

Weight gain was very stressful for us from 6-10 months at least. The other

comments on the list are correct, though, they can surprise you in what they

will try or like. I had a fruit plate at a restaurant and Henry wanted some. I

cut the fruit in little tiny squares and he basically ate all my food. We were

in the " give him fat " mode and we initially gave him foods that we thought might

put weight on him. He still prefers meals of fresh fruit, particularly

strawberries. If we are traveling, I make sure to have some in a cooler so he

has something I know he will eat. He has been in the 90th percentile primarily

and french fries are his favorite food, but he otherwise eats wheat toast,

bagels with cream cheese, crackers and fruit. Our nutritionist always suggested

three things: oatmeal, chicken and noodle casserole and spaghetti. Henry doesn't

eat any of these. We were told to give him a variety of foods on a plate or

surface and let him decide. Sometimes he eats rice cakes or rice krispies. He is

happy as a clam sitting eating rice krispies with a spoon. He makes a face if

you add milk. However, he will eat all of his dad's gorilla munch cereal with

milk directly from a bowl with a big spoon. I do think it is important to not

push them.

mom to Henry 2 wcf

[Guest guest]

> Keltie~

>

> I dont think there is anything wrong with posting

> advise, even if you are struggling. A lot of times we

> KNOW what to do but we can't.

>

> I think that is what a support group is for...

Geeez..I hope people give advice. Why would I post otherwise? To

hear myself rant and rave? Keep bringing it on!!!

Vicki

[Guest guest]

!

that is great! I am fighting just trying to get the Queen to eat. She has not

gained in a while. I am hoping that we can get her to gain at least a few

ounces before the end of the month for her clinic appointment. Otherwise I

think we might have to do more tube feeds again. I just do not want to do more

than we do now.

mom of AKA " The Queen of the Universe " , 5 with CF and " Prince Brother " on

the way, no CF

Weight gain

Clear DayWow!!!!!!!!!1

We just went to clinic and Liam has put on 1/2 kilo in 2 weeks. I have been

using poly cal (carbohydrate) and also using cocnut oil and coconut cream ice

cream which I make myself. Liam has been eating lots of (birds nest) grated

potatoe, squeeze the juice out of it and fry in coconut oil in little spoonfuls

till really crunchy. He loves them.

So excited for him, we are also changing over to creon to see if we can get

less bowel movements, we have 3-4 a day

All this weight has even been during an infection with Haemophilis?? para

influenze.

mum to Liam 19months wcf

[Guest guest]

Joanne,

Kwan, another member asked the exact same question earlier today or

yesterday I believe. There were quite a few responses so try to look

back at some of the older posts and see if any of the answers provided

help you.

I would recommend gaining a bit of weight only if you're overly

concerned about losing too much. I gained 10 pound pre surgery and have

since lost 12.5 lbs. I don't mind the weightloss (I'm 5.5 " and usually

weigh 128 - 130, now I weight 125.5) but people are starting to tell me

I am losing to much weight particularly in my face.

Hope you're well and rested after your holiday:-)

Sara

> Just came back from vacation!

> I was wondering if i should be trying to gain weight, and if so, how

> much? I'm pretty slender, and thought it would be a good idea to gain

a

> little, but how much? So long as I keep my calories up, I should be

OK,

> right? I don't know.

> ~Joanne

[Guest guest]

get your weight to where you feel awesome

i gained about 15 presurgery and after surgery lost a LOT of weight

i normally weigh around 160 but right before surgery i weighed 171

now, four weeks after surgery, i weigh 150-ish

thats a twenty pound weight loss, but my os said it was fine fine

fine

if you think your to thin, try and gain weight, but dont worry about

what other people say

everyone says i am to thin now, but i like my body the way it is, so

im not to worried, if you surgeon or doctor says youve lost to much

weight, then worry about gaining it back, otherwise id say it is fine

mlz

> > Just came back from vacation!

> > I was wondering if i should be trying to gain weight, and if so,

how

> > much? I'm pretty slender, and thought it would be a good idea to

gain

> a

> > little, but how much? So long as I keep my calories up, I should

be

> OK,

> > right? I don't know.

> > ~Joanne

[Guest guest]

Joanne,

I gain 15 lbs. presurgery. I lost 17 in the first two weeks. I think it

is a good idea to put on a little weight before surgery.

Jen.

> Just came back from vacation!

> I was wondering if i should be trying to gain weight, and if so, how

> much? I'm pretty slender, and thought it would be a good idea to gain

a

> little, but how much? So long as I keep my calories up, I should be

OK,

> right? I don't know.

> ~Joanne

[Guest guest]

Way to go, Brockton! That is awesome news. I'll bet you struggled

over each and every ounce. But whatever you are doing is wonderful.

It looks like he is achieving catch-up growth by making up for the

calorie depletion. You should be very proud, Jeanie. Good job.

Jodi Z

[Guest guest]

Hey Jeanie,

Congrats on the weight gain!! I remember a couple of times with ,

where he would suddenly gain, and we would be on cloud nine! LOL

Pat (g-ma to , RSS, 4 yrs old, 28# 10.6oz, 35 " , G-Tube, GHT)

[Guest guest]

Jeanie,

Congratulations to Brockton. Great job. Keep up the good work.

B

and Kelli

Jeanie wrote:

This afternoon I took Brockton to get a weight and height check at the

WIC office. Since Dec. 22 he has gained 1 lb. 3 oz. and 3/4 of an

inch according to their scale!!! I am amazed and anxious for his

appt. with his ped. on Tues. to see what their scales say! He has

been eating like a non-RSS child lately! Holy cow! I was going to

start checking his blood sugars because he's been getting so cranky

when he's tired but I will wait now until his ped. appt. and let her

check them and see what she says about it.

Happy Birthday, Autumn! We hope you had a great day!

Brockton and his family

[Guest guest]

yippy weight sounds great

cara mom to jacob 9

Jeanie wrote:

This afternoon I took Brockton to get a weight and height check at the

WIC office. Since Dec. 22 he has gained 1 lb. 3 oz. and 3/4 of an

inch according to their scale!!! I am amazed and anxious for his

appt. with his ped. on Tues. to see what their scales say! He has

been eating like a non-RSS child lately! Holy cow! I was going to

start checking his blood sugars because he's been getting so cranky

when he's tired but I will wait now until his ped. appt. and let her

check them and see what she says about it.

Happy Birthday, Autumn! We hope you had a great day!

Brockton and his family

[Guest guest]

Hello everyone, my first time on.

I have been on the scd diet now for 5 weeks. I have started to gain

quite a bit of weight in the thighs and butt, and stomach. Areas I

have never gained weight in my life. I'm concerned about the amount

of protein and fat my body has to digest being on this diet. I also

have weak adrenal glands.

I haven't eaten any of the goodies yet. Other then the meats,

raisins, nuts and nut butters have been keeping me alive. I will have

to start experimenting more because I am solo bored on this diet. I

feel hungry even though I am gaining weight. I am also breast feeding.

PS: Raisins that stick together, does that mean they have added sugars

too? I know dates it does.

Hope someone can help,

Lacy

[Guest guest]

>

> Hello everyone, my first time on.

> I have been on the scd diet now for 5 weeks. I have started to gain

> quite a bit of weight in the thighs and butt, and stomach. Areas I

> have never gained weight in my life. I'm concerned about the amount

> of protein and fat my body has to digest being on this diet. I also

> have weak adrenal glands.

>

> I haven't eaten any of the goodies yet. Other then the meats,

> raisins, nuts and nut butters have been keeping me alive. I will have

> to start experimenting more because I am solo bored on this diet. I

> feel hungry even though I am gaining weight. I am also breast feeding.

>

> PS: Raisins that stick together, does that mean they have added sugars

> too? I know dates it does.

>

> Hope someone can help,

>

> Lacy

Lacy,

Sun Maid raisins are legal for SCD. They are very calorie and sugar dense and I

gain

weight when I don't limit them,

You need the extra calories while breast feeding and you are giving your baby

the best

possible start by doing that.

When I make goat yogurt, I use 2% goat milk instead of 3.*% butterfat goat milk.

It's at

health food stores and Whole Foods. My yogurt is still rich and thick.

Curiously, I tolerate it

better than full fat milk and have asked Mimi to look into the reasons sometime.

I have to watch my weight. I was obese and lost 86 pounds BEFORE starting SCD.

SCD seems to keep it within the same two pounds and at what is called " the set

point. " I

will gain if I go on a raisin or nut binge.

If you wnt to track protein, fat, carbs etc. subscribe fto:

www.fitday.com

It is an excellent FREE online resource for balancing nutriton, monitoring

weight and

keeping track of what kinds of foods you are eating which is useful if trying to

identify

sensitivities.

Carol F

SCD 6 years

[Guest guest]

I am having trouble with the weight gain also, and sometimes when I feel like I am a little smaller, but the scale does not change or it goes up. I did notice that I was gaining the weight before I even got on the meds and I was running up to two miles a day before I was diagnosed, but was also having lots of fatigue. so maybe the weight gain is also a sarc thing because of the nerves it affects in the brain. just a thought seeing that we are all dealing with the weight. I go for tests tomorrow to see if the inflammation has stayed down with the decreasing of the pred. I love reading all your messages every day thanks for all your input everyone.

To: Neurosarcoidosis Sent: Tue, April 19, 2011 9:04:06 PMSubject: Re: New med

When I went off the Pred. I lost the round face, and the water retention was better, when I went back on it, I got the round face back with the water retention back, and off it went away again, however I do believe I gained wt each time, and haven't been able to lose that weight, in fact all I've done is gain, I can't remember the last time I lost any weight? Sorry to say. Marla "Fear less, hope more; Eat less, chew more; Whine less, breathe more; Talk less, say more; Love more, and all good things will be yours." - Irish Proverb

> Well you know I call Pred the hate/love drug, we hate to take it, but love how it helps us feel better.Isn't it just ...> I am really having a time trying to get rid of the Pred wt. still and it's been years. I started with some weights, and can tell I'm losing inches especially around the middle, but no weight off yet. I try to walk on the treadmill too, but finding that causes pain the next day, and that's only doing 10 mins.Yes, I have similar problems with pain in my knees and feet ...> Oh well I know it could be worse, and I am thankful the Remicade is slowing the progression down. Sweets is a biggie for me, I try to cut it out, then go on a sweet binge that makes me sick, so a little each day is better for me, still doesn't help the weight.Yes, I think "a little now and then" is more sustainable than a blanket ban

forever, that's my plan as well.So - the question I wanted to ask people is this :If you've gained weight on Pred, and have then been off it / on a low dose (and your weight stays high but stable), what happens when you back onto a high dose again? – Do you gain still MORE weight, and your face gets even MORE round etc, or do you stay roughly where you were before? In other words, do subsequent dose increases lead to further weight gain / fluid retention, or are the effects from the first big doses pretty stable?xo > Hang in there:)>> Marla>> "Fear less, hope more; Eat less, chew more; Whine less, breathe more; Talk less, say more; Love more, and all good things will be yours." - Irish Proverb>>>>>> > Oh, I forgot to ask about the milk thistle .... I need to see my GP this week, so I'll ask her about it then. At least my liver *is* slowly recovering, and the sarc probably isn't in there.>> Yeah, pretty sucky about being back on high pred, but I guess I knew it was inevitable at some point :/ At least it's cheap! I've decided I really have to do *something* about the weight gain (I've put on around 15 kg/33lb) and want to get back to my regular weight, and not put on even more on this new higher dose. Am trying to cut out sugar as much as possible, just forever. I also tend to get steroid-induced diabetes on high pred doses, so this should help with that too.>> xxoo D>>> >> > ,> > I'm sorry you have to go back to

high dose on the Pred. I've never tried CellCept, I do believe there are some that have. did you ask him about the milk thistle, I do swear by it.> > I do hope your vision gets better. I hate that it effects our eyes, one would think the rest of the body would be enough, feel better,> >> > Marla> >> > "Fear less, hope more; Eat less, chew more; Whine less, breathe more; Talk less, say more; Love more, and all good things will be yours." - Irish Proverb> >> >> >> >> >> > > >> > Well, have just spoken with my immunologist - my liver function tests are a bit better (still very high, but

dropping down closer to normal), which indicates that my liver was having trouble with the Imuran. My vision is also getting worse again. So I'm back onto a high pred dose (50 mg, sigh), and he'll be putting me onto Mycophenolate (CellCept) soon. Anyone else on this med?> >> > xo > >> >> >> >>>>> ------------------------------------>> ~~~~ *** ~~~ *** ~~~ *** ~~~~> The Neurosarcoidosis Community>>>> Message Archives:-> http://groups.yahoo.com/group/Neurosarcoidosis/messages>> Members Database:-> Listings of locations, phone numbers, and instant messengers.> http://groups.yahoo.com/group/Neurosarcoidosis/database>>

[Guest guest]

, it will be interesting to see the feedback on weight gain. In my case I actually lost a bunch of weight when the systemic sarc hit because I was too exhausted to eat, let alone fix meals, and for sure too tired to clean up. I lost 35# in about 4 months. Of course I gained back all of that & a lot more once I was on Pred.

Ramblin' RoseCo-owner/Moderator "I child-proofed my home and they STILL get in!" (Bumper sticker)

To: Neurosarcoidosis From: precisesewing@...Date: Wed, 20 Apr 2011 11:32:30 -0700Subject: Re: weight gain

I am having trouble with the weight gain also, and sometimes when I feel like I am a little smaller, but the scale does not change or it goes up. I did notice that I was gaining the weight before I even got on the meds and I was running up to two miles a day before I was diagnosed, but was also having lots of fatigue. so maybe the weight gain is also a sarc thing because of the nerves it affects in the brain. just a thought seeing that we are all dealing with the weight. I go for tests tomorrow to see if the inflammation has stayed down with the decreasing of the pred. I love reading all your messages every day thanks for all your input everyone.

To: Neurosarcoidosis Sent: Tue, April 19, 2011 9:04:06 PMSubject: Re: New med

When I went off the Pred. I lost the round face, and the water retention was better, when I went back on it, I got the round face back with the water retention back, and off it went away again, however I do believe I gained wt each time, and haven't been able to lose that weight, in fact all I've done is gain, I can't remember the last time I lost any weight? Sorry to say. Marla "Fear less, hope more; Eat less, chew more; Whine less, breathe more; Talk less, say more; Love more, and all good things will be yours." - Irish Proverb

> Well you know I call Pred the hate/love drug, we hate to take it, but love how it helps us feel better.Isn't it just ...> I am really having a time trying to get rid of the Pred wt. still and it's been years. I started with some weights, and can tell I'm losing inches especially around the middle, but no weight off yet. I try to walk on the treadmill too, but finding that causes pain the next day, and that's only doing 10 mins.Yes, I have similar problems with pain in my knees and feet ...> Oh well I know it could be worse, and I am thankful the Remicade is slowing the progression down. Sweets is a biggie for me, I try to cut it out, then go on a sweet binge that makes me sick, so a little each day is better for me, still doesn't help the weight.Yes, I think "a little now and then" is more sustainable than a blanket ban forever, that's my plan as well.So - the question I wanted to ask people is this :If you've gained weight on Pred, and have then been off it / on a low dose (and your weight stays high but stable), what happens when you back onto a high dose again? – Do you gain still MORE weight, and your face gets even MORE round etc, or do you stay roughly where you were before? In other words, do subsequent dose increases lead to further weight gain / fluid retention, or are the effects from the first big doses pretty stable?xo > Hang in there:)>> Marla>> "Fear less, hope more; Eat less, chew more; Whine less, breathe more; Talk less, say more; Love more, and all good things will be yours." - Irish Proverb>>>>>> > Oh, I forgot to ask about the milk thistle .... I need to see my GP this week, so I'll ask her about it then. At least my liver *is* slowly recovering, and the sarc probably isn't in there.>> Yeah, pretty sucky about being back on high pred, but I guess I knew it was inevitable at some point :/ At least it's cheap! I've decided I really have to do *something* about the weight gain (I've put on around 15 kg/33lb) and want to get back to my regular weight, and not put on even more on this new higher dose. Am trying to cut out sugar as much as possible, just forever. I also tend to get steroid-induced diabetes on high pred doses, so this should help with that too.>> xxoo D>>> >> > ,> > I'm sorry you have to go back to high dose on the Pred. I've never tried CellCept, I do believe there are some that have. did you ask him about the milk thistle, I do swear by it.> > I do hope your vision gets better. I hate that it effects our eyes, one would think the rest of the body would be enough, feel better,> >> > Marla> >> > "Fear less, hope more; Eat less, chew more; Whine less, breathe more; Talk less, say more; Love more, and all good things will be yours." - Irish Proverb> >> >> >> >> >> > > >> > Well, have just spoken with my immunologist - my liver function tests are a bit better (still very high, but dropping down closer to normal), which indicates that my liver was having trouble with the Imuran. My vision is also getting worse again. So I'm back onto a high pred dose (50 mg, sigh), and he'll be putting me onto Mycophenolate (CellCept) soon. Anyone else on this med?> >> > xo > >> >> >> >>>>> ------------------------------------>> ~~~~ *** ~~~ *** ~~~ *** ~~~~> The Neurosarcoidosis Community>>>> Message Archives:-> http://groups.yahoo.com/group/Neurosarcoidosis/messages>> Members Database:-> Listings of locations, phone numbers, and instant messengers.> http://groups.yahoo.com/group/Neurosarcoidosis/database>>

[Guest guest]

I think that weight loss is actually a symptom of Sarc. It's just the drugs that put the weight on...To: neurosarcoidosis Sent: Thu, April 21, 2011 10:39:42 PMSubject: RE: weight gain

, it will be interesting to see the feedback on weight gain. In my case I actually lost a bunch of weight when the systemic sarc hit because I was too exhausted to eat, let alone fix meals, and for sure too tired to clean up. I lost 35# in about 4 months. Of course I gained back all of that & a lot more once I was on Pred.

Ramblin' RoseCo-owner/Moderator "I child-proofed my home and they STILL get in!" (Bumper sticker)

To: Neurosarcoidosis From: precisesewing@...Date: Wed, 20 Apr 2011 11:32:30 -0700Subject: Re: weight gain

I am having trouble with the weight gain also, and sometimes when I feel like I am a little smaller, but the scale does not change or it goes up. I did notice that I was gaining the weight before I even got on the meds and I was running up to two miles a day before I was diagnosed, but was also having lots of fatigue. so maybe the weight gain is also a sarc thing because of the nerves it affects in the brain. just a thought seeing that we are all dealing with the weight. I go for tests tomorrow to see if the inflammation has stayed down with the decreasing of the pred. I love reading all your messages every day thanks for all your input everyone.

To: Neurosarcoidosis Sent: Tue, April 19, 2011 9:04:06 PMSubject: Re: New med

When I went off the Pred. I lost the round face, and the water retention was better, when I went back on it, I got the round face back with the water retention back, and off it went away again, however I do believe I gained wt each time, and haven't been able to lose that weight, in fact all I've done is gain, I can't remember the last time I lost any weight? Sorry to say. Marla "Fear less, hope more; Eat less, chew more; Whine less, breathe more; Talk less, say more; Love more, and all good things will be yours." - Irish Proverb

> Well you know I call Pred the hate/love drug, we hate to take it, but love how it helps us feel better.Isn't it just ...> I am really having a time trying to get rid of the Pred wt. still and it's been years. I started with some weights, and can tell I'm losing inches especially around the middle, but no weight off yet. I try to walk on the treadmill too, but finding that causes pain the next day, and that's only doing 10 mins.Yes, I have similar problems with pain in my knees and feet ...> Oh well I know it could be worse, and I am thankful the Remicade is slowing the progression down. Sweets is a biggie for me, I try to cut it out, then go on a sweet binge that makes me sick, so a little each day is better for me, still doesn't help the weight.Yes, I think "a little now and then" is more sustainable than a blanket

ban forever, that's my plan as well.So - the question I wanted to ask people is this :If you've gained weight on Pred, and have then been off it / on a low dose (and your weight stays high but stable), what happens when you back onto a high dose again? – Do you gain still MORE weight, and your face gets even MORE round etc, or do you stay roughly where you were before? In other words, do subsequent dose increases lead to further weight gain / fluid retention, or are the effects from the first big doses pretty stable?xo > Hang in there:)>> Marla>> "Fear less, hope more; Eat less, chew more; Whine less, breathe more; Talk less, say more; Love more, and all good things will be yours." - Irish Proverb>>>>>> > Oh, I forgot to ask about the milk thistle .... I need to see my GP this week, so I'll ask her about it then. At least my liver *is* slowly recovering, and the sarc probably isn't in there.>> Yeah, pretty sucky about being back on high pred, but I guess I knew it was inevitable at some point :/ At least it's cheap! I've decided I really have to do *something* about the weight gain (I've put on around 15 kg/33lb) and want to get back to my regular weight, and not put on even more on this new higher dose. Am trying to cut out sugar as much as possible, just forever. I also tend to get steroid-induced diabetes on high pred doses, so this should help with that too.>> xxoo D>>> >> > ,> > I'm sorry you have to go back to high

dose on the Pred. I've never tried CellCept, I do believe there are some that have. did you ask him about the milk thistle, I do swear by it.> > I do hope your vision gets better. I hate that it effects our eyes, one would think the rest of the body would be enough, feel better,> >> > Marla> >> > "Fear less, hope more; Eat less, chew more; Whine less, breathe more; Talk less, say more; Love more, and all good things will be yours." - Irish Proverb> >> >> >> >> >> > > >> > Well, have just spoken with my immunologist - my liver function tests are a bit better (still very high, but

dropping down closer to normal), which indicates that my liver was having trouble with the Imuran. My vision is also getting worse again. So I'm back onto a high pred dose (50 mg, sigh), and he'll be putting me onto Mycophenolate (CellCept) soon. Anyone else on this med?> >> > xo > >> >> >> >>>>> ------------------------------------>> ~~~~ *** ~~~ *** ~~~ *** ~~~~> The Neurosarcoidosis Community>>>> Message Archives:-> http://groups.yahoo.com/group/Neurosarcoidosis/messages>> Members Database:-> Listings of locations, phone numbers, and instant messengers.> http://groups.yahoo.com/group/Neurosarcoidosis/database>>

[Guest guest]

I don't remember losing weight, but I started out with mild bouts, on and off Pred pretty quick early on, and wasn't until I had to stay on it, like for 3 years, that I started and continued to gain wt. then went off, and was able to lose like 10 lb.  Then went on lyerica, and gained like 15, not off the Lyerica and starting to lose some weight, but also started working with weights as I was getting now where with the treadmill, 10 mins wasn't helping with weight loss.  The weights I am doing is upper body, but using the core, abs too, can't lift any weight with my legs.

OK maybe that was more then you wanted to know.  Marla " Fear less, hope more; Eat less, chew more; Whine less, breathe more; Talk less, say more; Love more, and all good things will be yours. " - Irish Proverb  

 

, it will be interesting to see the feedback on weight gain.  In my case I actually lost a bunch of weight when the systemic sarc hit because I was too exhausted to eat, let alone fix meals, and for sure too tired to clean up.  I lost 35# in about 4 months.  Of course I gained back all of that & a lot more once I was on Pred.

Ramblin' RoseCo-owner/Moderator

  " I child-proofed my home and they STILL get in! "      (Bumper sticker)

 

To: Neurosarcoidosis From: precisesewing@...Date: Wed, 20 Apr 2011 11:32:30 -0700

Subject: Re: weight gain

I am having trouble with the weight gain also, and sometimes when I feel like I am a little smaller, but the scale does not change or it goes up.  I did notice that I was gaining the weight before I even got on the meds and I was running up to two miles a day before I was diagnosed, but was also having lots of fatigue.  so maybe the weight gain is also a sarc thing because of the nerves it affects in the brain.  just a thought seeing that we are all dealing with the weight.  I go for tests tomorrow to see if the inflammation has stayed down with the decreasing of the pred.  I love reading all your messages every day thanks for all your input everyone.

To: Neurosarcoidosis

Sent: Tue, April 19, 2011 9:04:06 PMSubject: Re: New med 

When I went off the Pred. I lost the round face, and the water retention was better, when I went back on it,  I got the round face back with the water retention back, and off it went away again, however I do believe I gained wt each time, and haven't been able to lose that weight, in fact all I've done is gain, I can't remember the last time I lost any weight?  Sorry to say.

Marla " Fear less, hope more; Eat less, chew more; Whine less, breathe more; Talk less, say more; Love more, and all good things will be yours. " - Irish Proverb  

> Well you know I call Pred the hate/love drug, we hate to take it, but love how it helps us feel better.Isn't it just ...> I am really having a time trying to get rid of the Pred wt. still and it's been years. I started with some weights, and can tell I'm losing inches especially around the middle, but no weight off yet. I try to walk on the treadmill too, but finding that causes pain the next day, and that's only doing 10 mins.

Yes, I have similar problems with pain in my knees and feet ...> Oh well I know it could be worse, and I am thankful the Remicade is slowing the progression down.  Sweets is a biggie for me, I try to cut it out, then go on a sweet binge that makes me sick, so a little each day is better for me, still doesn't help the weight.

Yes, I think " a little now and then " is more sustainable than a blanket ban forever, that's my plan as well.So - the question I wanted to ask people is this :If you've gained weight on Pred, and have then been off it / on a low dose (and your weight stays high but stable), what happens when you back onto a high dose again? – Do you gain still MORE weight, and your face gets even MORE round etc, or do you stay roughly where you were before? In other words, do subsequent dose increases lead to further weight gain / fluid retention, or are the effects from the first big doses pretty stable?

xo > Hang in there:)>> Marla>> " Fear less, hope more; Eat less, chew more; Whine less, breathe more; Talk less, say more; Love more, and all good things will be yours. " - Irish Proverb

>>>>>>

> Oh, I forgot to ask about the milk thistle .... I need to see my GP this week, so I'll ask her about it then. At least my liver *is* slowly recovering, and the sarc probably isn't in there.>> Yeah, pretty sucky about being back on high pred, but I guess I knew it was inevitable at some point  :/ At least it's cheap! I've decided I really have to do *something* about the weight gain (I've put on around 15 kg/33lb) and want to get back to my regular weight, and not put on even more on this new higher dose. Am trying to cut out sugar as much as possible, just forever. I also tend to get steroid-induced diabetes on high pred doses, so this should help with that too.

>> xxoo D>>> >> > ,> > I'm sorry you have to go back to high dose on the Pred.  I've never tried CellCept, I do believe there are some that have. did you ask him about the milk thistle, I do swear by it.

> > I do hope your vision gets better.  I hate that it effects our eyes, one would think the rest of the body would be enough, feel better,> >> > Marla> >> > " Fear less, hope more; Eat less, chew more; Whine less, breathe more; Talk less, say more; Love more, and all good things will be yours. " - Irish Proverb

> >> >> >> >> >> >

> >> > Well, have just spoken with my immunologist - my liver function tests are a bit better (still very high, but dropping down closer to normal), which indicates that my liver was having trouble with the Imuran. My vision is also getting worse again. So I'm back onto a high pred dose (50 mg, sigh), and he'll be putting me onto Mycophenolate (CellCept) soon. Anyone else on this med?

> >> > xo > >> >> >> >>>>> ------------------------------------>> ~~~~ *** ~~~ *** ~~~ *** ~~~~> The Neurosarcoidosis Community

>>>> Message Archives:-> http://groups.yahoo.com/group/Neurosarcoidosis/messages>> Members Database:-

> Listings of locations, phone numbers, and instant messengers.> http://groups.yahoo.com/group/Neurosarcoidosis/database>

>

[Guest guest]

OH ya, I'll add here, the other day when I was into see my main doctor he finally had a hand out on Sarcoidosis, so I took it,  it states wt. loss is one of the first symptoms before meds.  I also found it interesting that it said skin (face) lesions can be treated with minocycline, my doctor said he would use Tetracycline as cheaper, but then I forgot about, and he forget to call it in, so need to call him back. I swear I get new lesions on my skin every day, I have a lot of the flat under the skin kind, but also get the ones that look like the zit from he-- on my face, and of course it's there so you know what that means, I pick, they get worse, sometimes I feel like I'm 16 again, lol

trying to catch up, again.  Marla " Fear less, hope more; Eat less, chew more; Whine less, breathe more; Talk less, say more; Love more, and all good things will be yours. " - Irish Proverb  

 

, it will be interesting to see the feedback on weight gain.  In my case I actually lost a bunch of weight when the systemic sarc hit because I was too exhausted to eat, let alone fix meals, and for sure too tired to clean up.  I lost 35# in about 4 months.  Of course I gained back all of that & a lot more once I was on Pred.

Ramblin' RoseCo-owner/Moderator

  " I child-proofed my home and they STILL get in! "      (Bumper sticker)

 

To: Neurosarcoidosis From: precisesewing@...Date: Wed, 20 Apr 2011 11:32:30 -0700

Subject: Re: weight gain

I am having trouble with the weight gain also, and sometimes when I feel like I am a little smaller, but the scale does not change or it goes up.  I did notice that I was gaining the weight before I even got on the meds and I was running up to two miles a day before I was diagnosed, but was also having lots of fatigue.  so maybe the weight gain is also a sarc thing because of the nerves it affects in the brain.  just a thought seeing that we are all dealing with the weight.  I go for tests tomorrow to see if the inflammation has stayed down with the decreasing of the pred.  I love reading all your messages every day thanks for all your input everyone.

To: Neurosarcoidosis

Sent: Tue, April 19, 2011 9:04:06 PMSubject: Re: New med 

When I went off the Pred. I lost the round face, and the water retention was better, when I went back on it,  I got the round face back with the water retention back, and off it went away again, however I do believe I gained wt each time, and haven't been able to lose that weight, in fact all I've done is gain, I can't remember the last time I lost any weight?  Sorry to say.

Marla " Fear less, hope more; Eat less, chew more; Whine less, breathe more; Talk less, say more; Love more, and all good things will be yours. " - Irish Proverb  

> Well you know I call Pred the hate/love drug, we hate to take it, but love how it helps us feel better.Isn't it just ...> I am really having a time trying to get rid of the Pred wt. still and it's been years. I started with some weights, and can tell I'm losing inches especially around the middle, but no weight off yet. I try to walk on the treadmill too, but finding that causes pain the next day, and that's only doing 10 mins.

Yes, I have similar problems with pain in my knees and feet ...> Oh well I know it could be worse, and I am thankful the Remicade is slowing the progression down.  Sweets is a biggie for me, I try to cut it out, then go on a sweet binge that makes me sick, so a little each day is better for me, still doesn't help the weight.

Yes, I think " a little now and then " is more sustainable than a blanket ban forever, that's my plan as well.So - the question I wanted to ask people is this :If you've gained weight on Pred, and have then been off it / on a low dose (and your weight stays high but stable), what happens when you back onto a high dose again? – Do you gain still MORE weight, and your face gets even MORE round etc, or do you stay roughly where you were before? In other words, do subsequent dose increases lead to further weight gain / fluid retention, or are the effects from the first big doses pretty stable?

xo > Hang in there:)>> Marla>> " Fear less, hope more; Eat less, chew more; Whine less, breathe more; Talk less, say more; Love more, and all good things will be yours. " - Irish Proverb

>>>>>>

> Oh, I forgot to ask about the milk thistle .... I need to see my GP this week, so I'll ask her about it then. At least my liver *is* slowly recovering, and the sarc probably isn't in there.>> Yeah, pretty sucky about being back on high pred, but I guess I knew it was inevitable at some point  :/ At least it's cheap! I've decided I really have to do *something* about the weight gain (I've put on around 15 kg/33lb) and want to get back to my regular weight, and not put on even more on this new higher dose. Am trying to cut out sugar as much as possible, just forever. I also tend to get steroid-induced diabetes on high pred doses, so this should help with that too.

>> xxoo D>>> >> > ,> > I'm sorry you have to go back to high dose on the Pred.  I've never tried CellCept, I do believe there are some that have. did you ask him about the milk thistle, I do swear by it.

> > I do hope your vision gets better.  I hate that it effects our eyes, one would think the rest of the body would be enough, feel better,> >> > Marla> >> > " Fear less, hope more; Eat less, chew more; Whine less, breathe more; Talk less, say more; Love more, and all good things will be yours. " - Irish Proverb

> >> >> >> >> >> >

> >> > Well, have just spoken with my immunologist - my liver function tests are a bit better (still very high, but dropping down closer to normal), which indicates that my liver was having trouble with the Imuran. My vision is also getting worse again. So I'm back onto a high pred dose (50 mg, sigh), and he'll be putting me onto Mycophenolate (CellCept) soon. Anyone else on this med?

> >> > xo > >> >> >> >>>>> ------------------------------------>> ~~~~ *** ~~~ *** ~~~ *** ~~~~> The Neurosarcoidosis Community

>>>> Message Archives:-> http://groups.yahoo.com/group/Neurosarcoidosis/messages>> Members Database:-

> Listings of locations, phone numbers, and instant messengers.> http://groups.yahoo.com/group/Neurosarcoidosis/database>

>

[Guest guest]

That was actually helpful info, Marla. It's good to remember that working out, especially resistance or strength training, can increase muscle mass. Muscle is heavier than fat, so that you may not lose much weight, but will get healthier & more compact. So we don't want to just focus on what the scales say.

Ramblin' RoseCo-owner/Moderator "I child-proofed my home and they STILL get in!" (Bumper sticker)

To: Neurosarcoidosis From: mebramer@...Date: Fri, 22 Apr 2011 21:29:37 -0600Subject: Re: weight gain

I don't remember losing weight, but I started out with mild bouts, on and off Pred pretty quick early on, and wasn't until I had to stay on it, like for 3 years, that I started and continued to gain wt. then went off, and was able to lose like 10 lb. Then went on lyerica, and gained like 15, not off the Lyerica and starting to lose some weight, but also started working with weights as I was getting now where with the treadmill, 10 mins wasn't helping with weight loss. The weights I am doing is upper body, but using the core, abs too, can't lift any weight with my legs. OK maybe that was more then you wanted to know. Marla "Fear less, hope more; Eat less, chew more; Whine less, breathe more; Talk less, say more; Love more, and all good things will be yours." - Irish Proverb

, it will be interesting to see the feedback on weight gain. In my case I actually lost a bunch of weight when the systemic sarc hit because I was too exhausted to eat, let alone fix meals, and for sure too tired to clean up. I lost 35# in about 4 months. Of course I gained back all of that & a lot more once I was on Pred.

Ramblin' RoseCo-owner/Moderator "I child-proofed my home and they STILL get in!" (Bumper sticker)

To: Neurosarcoidosis From: precisesewing@...Date: Wed, 20 Apr 2011 11:32:30 -0700Subject: Re: weight gain

I am having trouble with the weight gain also, and sometimes when I feel like I am a little smaller, but the scale does not change or it goes up. I did notice that I was gaining the weight before I even got on the meds and I was running up to two miles a day before I was diagnosed, but was also having lots of fatigue. so maybe the weight gain is also a sarc thing because of the nerves it affects in the brain. just a thought seeing that we are all dealing with the weight. I go for tests tomorrow to see if the inflammation has stayed down with the decreasing of the pred. I love reading all your messages every day thanks for all your input everyone.

To: Neurosarcoidosis Sent: Tue, April 19, 2011 9:04:06 PMSubject: Re: New med When I went off the Pred. I lost the round face, and the water retention was better, when I went back on it, I got the round face back with the water retention back, and off it went away again, however I do believe I gained wt each time, and haven't been able to lose that weight, in fact all I've done is gain, I can't remember the last time I lost any weight? Sorry to say. Marla "Fear less, hope more; Eat less, chew more; Whine less, breathe more; Talk less, say more; Love more, and all good things will be yours." - Irish Proverb

> Well you know I call Pred the hate/love drug, we hate to take it, but love how it helps us feel better.Isn't it just ...> I am really having a time trying to get rid of the Pred wt. still and it's been years. I started with some weights, and can tell I'm losing inches especially around the middle, but no weight off yet. I try to walk on the treadmill too, but finding that causes pain the next day, and that's only doing 10 mins.Yes, I have similar problems with pain in my knees and feet ...> Oh well I know it could be worse, and I am thankful the Remicade is slowing the progression down. Sweets is a biggie for me, I try to cut it out, then go on a sweet binge that makes me sick, so a little each day is better for me, still doesn't help the weight.Yes, I think "a little now and then" is more sustainable than a blanket ban forever, that's my plan as well.So - the question I wanted to ask people is this :If you've gained weight on Pred, and have then been off it / on a low dose (and your weight stays high but stable), what happens when you back onto a high dose again? – Do you gain still MORE weight, and your face gets even MORE round etc, or do you stay roughly where you were before? In other words, do subsequent dose increases lead to further weight gain / fluid retention, or are the effects from the first big doses pretty stable?xo > Hang in there:)>> Marla>> "Fear less, hope more; Eat less, chew more; Whine less, breathe more; Talk less, say more; Love more, and all good things will be yours." - Irish Proverb>>>>>> > Oh, I forgot to ask about the milk thistle .... I need to see my GP this week, so I'll ask her about it then. At least my liver *is* slowly recovering, and the sarc probably isn't in there.>> Yeah, pretty sucky about being back on high pred, but I guess I knew it was inevitable at some point :/ At least it's cheap! I've decided I really have to do *something* about the weight gain (I've put on around 15 kg/33lb) and want to get back to my regular weight, and not put on even more on this new higher dose. Am trying to cut out sugar as much as possible, just forever. I also tend to get steroid-induced diabetes on high pred doses, so this should help with that too.>> xxoo D>>> >> > ,> > I'm sorry you have to go back to high dose on the Pred. I've never tried CellCept, I do believe there are some that have. did you ask him about the milk thistle, I do swear by it.> > I do hope your vision gets better. I hate that it effects our eyes, one would think the rest of the body would be enough, feel better,> >> > Marla> >> > "Fear less, hope more; Eat less, chew more; Whine less, breathe more; Talk less, say more; Love more, and all good things will be yours." - Irish Proverb> >> >> >> >> >> > > >> > Well, have just spoken with my immunologist - my liver function tests are a bit better (still very high, but dropping down closer to normal), which indicates that my liver was having trouble with the Imuran. My vision is also getting worse again. So I'm back onto a high pred dose (50 mg, sigh), and he'll be putting me onto Mycophenolate (CellCept) soon. Anyone else on this med?> >> > xo > >> >> >> >>>>> ------------------------------------>> ~~~~ *** ~~~ *** ~~~ *** ~~~~> The Neurosarcoidosis Community>>>> Message Archives:-> http://groups.yahoo.com/group/Neurosarcoidosis/messages>> Members Database:-> Listings of locations, phone numbers, and instant messengers.> http://groups.yahoo.com/group/Neurosarcoidosis/database>>

[Guest guest]

Hey, at least you are feeling younger again, even if it's picking zits, right? Let us know how the tetracycline works (once you get it, of course!)

Ramblin' RoseCo-owner/Moderator "I child-proofed my home and they STILL get in!" (Bumper sticker)

To: Neurosarcoidosis From: mebramer@...Date: Fri, 22 Apr 2011 21:34:58 -0600Subject: Re: weight gain

OH ya, I'll add here, the other day when I was into see my main doctor he finally had a hand out on Sarcoidosis, so I took it, it states wt. loss is one of the first symptoms before meds. I also found it interesting that it said skin (face) lesions can be treated with minocycline, my doctor said he would use Tetracycline as cheaper, but then I forgot about, and he forget to call it in, so need to call him back. I swear I get new lesions on my skin every day, I have a lot of the flat under the skin kind, but also get the ones that look like the zit from he-- on my face, and of course it's there so you know what that means, I pick, they get worse, sometimes I feel like I'm 16 again, lol trying to catch up, again. Marla "Fear less, hope more; Eat less, chew more; Whine less, breathe more; Talk less, say more; Love more, and all good things will be yours." - Irish Proverb

, it will be interesting to see the feedback on weight gain. In my case I actually lost a bunch of weight when the systemic sarc hit because I was too exhausted to eat, let alone fix meals, and for sure too tired to clean up. I lost 35# in about 4 months. Of course I gained back all of that & a lot more once I was on Pred.

Ramblin' RoseCo-owner/Moderator "I child-proofed my home and they STILL get in!" (Bumper sticker)

To: Neurosarcoidosis From: precisesewing@...Date: Wed, 20 Apr 2011 11:32:30 -0700Subject: Re: weight gain

I am having trouble with the weight gain also, and sometimes when I feel like I am a little smaller, but the scale does not change or it goes up. I did notice that I was gaining the weight before I even got on the meds and I was running up to two miles a day before I was diagnosed, but was also having lots of fatigue. so maybe the weight gain is also a sarc thing because of the nerves it affects in the brain. just a thought seeing that we are all dealing with the weight. I go for tests tomorrow to see if the inflammation has stayed down with the decreasing of the pred. I love reading all your messages every day thanks for all your input everyone.

To: Neurosarcoidosis Sent: Tue, April 19, 2011 9:04:06 PMSubject: Re: New med When I went off the Pred. I lost the round face, and the water retention was better, when I went back on it, I got the round face back with the water retention back, and off it went away again, however I do believe I gained wt each time, and haven't been able to lose that weight, in fact all I've done is gain, I can't remember the last time I lost any weight? Sorry to say. Marla "Fear less, hope more; Eat less, chew more; Whine less, breathe more; Talk less, say more; Love more, and all good things will be yours." - Irish Proverb

> Well you know I call Pred the hate/love drug, we hate to take it, but love how it helps us feel better.Isn't it just ...> I am really having a time trying to get rid of the Pred wt. still and it's been years. I started with some weights, and can tell I'm losing inches especially around the middle, but no weight off yet. I try to walk on the treadmill too, but finding that causes pain the next day, and that's only doing 10 mins.Yes, I have similar problems with pain in my knees and feet ...> Oh well I know it could be worse, and I am thankful the Remicade is slowing the progression down. Sweets is a biggie for me, I try to cut it out, then go on a sweet binge that makes me sick, so a little each day is better for me, still doesn't help the weight.Yes, I think "a little now and then" is more sustainable than a blanket ban forever, that's my plan as well.So - the question I wanted to ask people is this :If you've gained weight on Pred, and have then been off it / on a low dose (and your weight stays high but stable), what happens when you back onto a high dose again? – Do you gain still MORE weight, and your face gets even MORE round etc, or do you stay roughly where you were before? In other words, do subsequent dose increases lead to further weight gain / fluid retention, or are the effects from the first big doses pretty stable?xo > Hang in there:)>> Marla>> "Fear less, hope more; Eat less, chew more; Whine less, breathe more; Talk less, say more; Love more, and all good things will be yours." - Irish Proverb>>>>>> > Oh, I forgot to ask about the milk thistle .... I need to see my GP this week, so I'll ask her about it then. At least my liver *is* slowly recovering, and the sarc probably isn't in there.>> Yeah, pretty sucky about being back on high pred, but I guess I knew it was inevitable at some point :/ At least it's cheap! I've decided I really have to do *something* about the weight gain (I've put on around 15 kg/33lb) and want to get back to my regular weight, and not put on even more on this new higher dose. Am trying to cut out sugar as much as possible, just forever. I also tend to get steroid-induced diabetes on high pred doses, so this should help with that too.>> xxoo D>>> >> > ,> > I'm sorry you have to go back to high dose on the Pred. I've never tried CellCept, I do believe there are some that have. did you ask him about the milk thistle, I do swear by it.> > I do hope your vision gets better. I hate that it effects our eyes, one would think the rest of the body would be enough, feel better,> >> > Marla> >> > "Fear less, hope more; Eat less, chew more; Whine less, breathe more; Talk less, say more; Love more, and all good things will be yours." - Irish Proverb> >> >> >> >> >> > > >> > Well, have just spoken with my immunologist - my liver function tests are a bit better (still very high, but dropping down closer to normal), which indicates that my liver was having trouble with the Imuran. My vision is also getting worse again. So I'm back onto a high pred dose (50 mg, sigh), and he'll be putting me onto Mycophenolate (CellCept) soon. Anyone else on this med?> >> > xo > >> >> >> >>>>> ------------------------------------>> ~~~~ *** ~~~ *** ~~~ *** ~~~~> The Neurosarcoidosis Community>>>> Message Archives:-> http://groups.yahoo.com/group/Neurosarcoidosis/messages>> Members Database:-> Listings of locations, phone numbers, and instant messengers.> http://groups.yahoo.com/group/Neurosarcoidosis/database>>

[Guest guest]

COMPLETELY AGREE about avoiding the scales, and them having very limited use ...

usually how your clothes are fitting is a better guide, or using a tape measure

for your 'vital statistics' if you want numbers to compare. BMI is a fairly

faulty calculation too ...

xo

> That was actually helpful info, Marla. It's good to remember that working

out, especially resistance or strength training, can increase muscle mass.

Muscle is heavier than fat, so that you may not lose much weight, but will get

healthier & more compact. So we don't want to just focus on what the scales

say.

>

> Ramblin' Rose

> Co-owner/Moderator

>

> " I child-proofed my home and they STILL get in! " (Bumper sticker)

>

>

>

>

> To: Neurosarcoidosis

> From: mebramer@...

> Date: Fri, 22 Apr 2011 21:29:37 -0600

> Subject: Re: weight gain

>

>

>

> I don't remember losing weight, but I started out with mild bouts, on and off

Pred pretty quick early on, and wasn't until I had to stay on it, like for 3

years, that I started and continued to gain wt. then went off, and was able to

lose like 10 lb. Then went on lyerica, and gained like 15, not off the Lyerica

and starting to lose some weight, but also started working with weights as I was

getting now where with the treadmill, 10 mins wasn't helping with weight loss.

The weights I am doing is upper body, but using the core, abs too, can't lift

any weight with my legs.

> OK maybe that was more then you wanted to know.

>

> Marla

>

> " Fear less, hope more; Eat less, chew more; Whine less, breathe more; Talk

less, say more; Love more, and all good things will be yours. " - Irish Proverb

>

>

>

>

>

>

> , it will be interesting to see the feedback on weight gain. In my case

I actually lost a bunch of weight when the systemic sarc hit because I was too

exhausted to eat, let alone fix meals, and for sure too tired to clean up. I

lost 35# in about 4 months. Of course I gained back all of that & a lot more

once I was on Pred.

>

>

> Ramblin' Rose

> Co-owner/Moderator

>

> " I child-proofed my home and they STILL get in! " (Bumper sticker)

>

>

>

>

>

> To: Neurosarcoidosis

> From: precisesewing@...

> Date: Wed, 20 Apr 2011 11:32:30 -0700

> Subject: Re: weight gain

>

>

>

> I am having trouble with the weight gain also, and sometimes when I feel like

I am a little smaller, but the scale does not change or it goes up. I did

notice that I was gaining the weight before I even got on the meds and I was

running up to two miles a day before I was diagnosed, but was also having lots

of fatigue. so maybe the weight gain is also a sarc thing because of the nerves

it affects in the brain. just a thought seeing that we are all dealing with the

weight. I go for tests tomorrow to see if the inflammation has stayed down with

the decreasing of the pred. I love reading all your messages every day thanks

for all your input everyone.

>

>

>

> To: Neurosarcoidosis

> Sent: Tue, April 19, 2011 9:04:06 PM

> Subject: Re: New med

>

>

> When I went off the Pred. I lost the round face, and the water retention was

better, when I went back on it, I got the round face back with the water

retention back, and off it went away again, however I do believe I gained wt

each time, and haven't been able to lose that weight, in fact all I've done is

gain, I can't remember the last time I lost any weight? Sorry to say.

>

> Marla

>

> " Fear less, hope more; Eat less, chew more; Whine less, breathe more; Talk

less, say more; Love more, and all good things will be yours. " - Irish Proverb

>

>

>

>

> On Tue, Apr 19, 2011 at 4:42 PM, Sutherland

wrote:

> > Well you know I call Pred the hate/love drug, we hate to take it, but love

how it helps us feel better.

>

> Isn't it just ...

>

> > I am really having a time trying to get rid of the Pred wt. still and it's

been years. I started with some weights, and can tell I'm losing inches

especially around the middle, but no weight off yet. I try to walk on the

treadmill too, but finding that causes pain the next day, and that's only doing

10 mins.

>

> Yes, I have similar problems with pain in my knees and feet ...

>

> > Oh well I know it could be worse, and I am thankful the Remicade is slowing

the progression down. Sweets is a biggie for me, I try to cut it out, then go

on a sweet binge that makes me sick, so a little each day is better for me,

still doesn't help the weight.

>

> Yes, I think " a little now and then " is more sustainable than a blanket ban

forever, that's my plan as well.

>

> So - the question I wanted to ask people is this :

> If you've gained weight on Pred, and have then been off it / on a low dose

(and your weight stays high but stable), what happens when you back onto a high

dose again? – Do you gain still MORE weight, and your face gets even MORE round

etc, or do you stay roughly where you were before? In other words, do subsequent

dose increases lead to further weight gain / fluid retention, or are the effects

from the first big doses pretty stable?

>

> xo

>

>

> > Hang in there:)

> >

> > Marla

> >

> > " Fear less, hope more; Eat less, chew more; Whine less, breathe more; Talk

less, say more; Love more, and all good things will be yours. " - Irish Proverb

> >

> >

> >

> >

> >

> > On Mon, Apr 18, 2011 at 3:49 PM, Sutherland

wrote:

> > Oh, I forgot to ask about the milk thistle .... I need to see my GP this

week, so I'll ask her about it then. At least my liver *is* slowly recovering,

and the sarc probably isn't in there.

> >

> > Yeah, pretty sucky about being back on high pred, but I guess I knew it was

inevitable at some point :/ At least it's cheap! I've decided I really have to

do *something* about the weight gain (I've put on around 15 kg/33lb) and want to

get back to my regular weight, and not put on even more on this new higher dose.

Am trying to cut out sugar as much as possible, just forever. I also tend to get

steroid-induced diabetes on high pred doses, so this should help with that too.

> >

> > xxoo D

> >

> >

> >

> >

> > > ,

> > > I'm sorry you have to go back to high dose on the Pred. I've never tried

CellCept, I do believe there are some that have. did you ask him about the milk

thistle, I do swear by it.

> > > I do hope your vision gets better. I hate that it effects our eyes, one

would think the rest of the body would be enough, feel better,

> > >

> > > Marla

> > >

> > > " Fear less, hope more; Eat less, chew more; Whine less, breathe more; Talk

less, say more; Love more, and all good things will be yours. " - Irish Proverb

> > >

> > >

> > >

> > >

> > >

> > > On Sun, Apr 17, 2011 at 8:54 PM, Sutherland

wrote:

> > >

> > > Well, have just spoken with my immunologist - my liver function tests are

a bit better (still very high, but dropping down closer to normal), which

indicates that my liver was having trouble with the Imuran. My vision is also

getting worse again. So I'm back onto a high pred dose (50 mg, sigh), and he'll

be putting me onto Mycophenolate (CellCept) soon. Anyone else on this med?

> > >

> > > xo

> > >

> > >

> > >

> > >

> >

> >

> >

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

> >

> > ~~~~ *** ~~~ *** ~~~ *** ~~~~

> > The Neurosarcoidosis Community

> >

> >

> >

> > Message Archives:-

> > http://groups.yahoo.com/group/Neurosarcoidosis/messages

> >

> > Members Database:-

> > Listings of locations, phone numbers, and instant messengers.

> > http://groups.yahoo.com/group/Neurosarcoidosis/database

> >

> >