Re: Future Reactions

[Guest guest]

I have to admit that I am not at all frightened. My asthma and

allergies were so bad before Xolair, that I was at much greater risk of

having a reaction before Xolair than I am from having one due to Xolair.

There are lots of medical procedures and treatments that carry greater

risks that people choose to use every day.

Addy

Group co-owner

on Xolair for 3+ years without any type of reaction

>

> Years ago I was given ACTH by an emergency room doctor whenever I had

> an asthma attack. It releaved me immediately until after a couple of

> years and up to twelve shots, when I started to turn black and had a

> terrible time breathing. They stopped it but my asthma was so bad

that

> I almost died.

> I am doing well on Xolair, have had 40 shots (one a month) to date

but

> now I am deathly afraid of a reaction. I would like to know how

other

> people feel about the changes, if any, they have had since starting

> Xolair. I have had several changes but do not know if Xolair is the

> cause or not, such as occassional arm and leg cramps, change in bowel

> movements and occassional trouble sleeping.

> How frightened are you about the news??

>

[Guest guest]

>

> Years ago I was given ACTH by an emergency room doctor whenever I had

> an asthma attack. It releaved me immediately until after a couple of

> years and up to twelve shots, when I started to turn black and had a

> terrible time breathing. They stopped it but my asthma was so bad that

> I almost died.

> I am doing well on Xolair, have had 40 shots (one a month) to date but

> now I am deathly afraid of a reaction. I would like to know how other

> people feel about the changes, if any, they have had since starting

> Xolair. I have had several changes but do not know if Xolair is the

> cause or not, such as occassional arm and leg cramps, change in bowel

> movements and occassional trouble sleeping.

> How frightened are you about the news??

If you had a serious reaction before, I can see how you are

frightened. Follow carefully your doctor's instructions and carry and

epi pen with you. It would be a shame to stop taking xolair and have

to go back on presnisone (if you had to take it before)

Pred is nasty stuff. Sure, it helps us breathe but the side effects

can be extremely bad if we have to take it for long periods of time.

(read my previous post #4824)

Personally, I have been on Xolair for over 3.5 years and have not had

one side effect. You can't even tell where they gave the shot 5

minutes later.

My doctor STILL makes me wait 30 minutes but is very adamant about us

carrying an epi pen. For those who have had any kind of reaction in

the past, he is even more picky. He makes them wait an hour and have

that epi pen closely next to their sides for a full day.

We are getting a new doctor in July. I will see what his opinion is.

He might be of the opinion to make us wait 2 hours. If that is the

case, I will have to completely re arrange my schedule.

Doug

Group founder

Co-owner-moderator

[Guest guest]

I am not frightened either. I know there is a greater

chance of me dying in a car accident or something

simple like that. I know that stress, anxiety, worry

can all make asthma flair up so I think that if you

believe you will have problems you will. I remember

when my Dr. fist told me about the possibility of A.

shock that I was sure that I was having a reaction

after my injection that day. I knew it was just

anxiety. Now I just get the injections and immediatly

forget about them and go about my day. As I said

before the only side affect for me is extreme

sleepiness for a few days and the 15 pound wieght gain

I have experienced. (Which is the worst thing for me.

Despite working out every day for 1 1/2 hours I have

not lost one pound!!! Thats 30 minutes of cardio plus

weight training. Arg!!)

Jeannie

--- pyle456 <coachmac@...> wrote:

> I have to admit that I am not at all frightened. My

> asthma and

> allergies were so bad before Xolair, that I was at

> much greater risk of

> having a reaction before Xolair than I am from

> having one due to Xolair.

>

> There are lots of medical procedures and treatments

> that carry greater

> risks that people choose to use every day.

>

> Addy

> Group co-owner

> on Xolair for 3+ years without any type of reaction

>

>

>

> >

> > Years ago I was given ACTH by an emergency room

> doctor whenever I had

> > an asthma attack. It releaved me immediately

> until after a couple of

> > years and up to twelve shots, when I started to

> turn black and had a

> > terrible time breathing. They stopped it but my

> asthma was so bad

> that

> > I almost died.

> > I am doing well on Xolair, have had 40 shots (one

> a month) to date

> but

> > now I am deathly afraid of a reaction. I would

> like to know how

> other

> > people feel about the changes, if any, they have

> had since starting

> > Xolair. I have had several changes but do not

> know if Xolair is the

> > cause or not, such as occassional arm and leg

> cramps, change in bowel

> > movements and occassional trouble sleeping.

> > How frightened are you about the news??

> >

>

>

>

__________________________________________________

[Guest guest]

I have been on Xolair for 2 years and self injecting for 1 3/4 years.

My only fear is the possible overreaction by this " announcement " . The

" adverse reaction percentage " is so relatively low for medications,

medical devices, etc, that it puzzles me why the FDA did this,

statically this is not impressive. This has forced some Drs. to alter

their practice of administering Xolair to avoid the legal

ramifications. I can not blame them as they are battered constantly

by, " I'm going to sue! " The fact that the insurance companies have

been paying thousands for Xolair, and the possibility of future

diminishment in the prescribing of Xolair due to this announcement,

has not escaped my attention.

I have not had any adverse reactions from Xolair. I have had numerous

adverse reactions from other medications. The bottom line is that an

agreement between me and my Dr has been reached as to the positives

vs. the negatives and we are both happy and very comfortable with

Xolair and it's benefits. I can not say the same about the other

medications I take, Prednisone, etc, but again I will follow my Dr.'s

instructions, breathing is not an option.

If I had a history of anaphylactic shock I would want my condition

monitored very closely. I do not and never have, and I question the

sincerity when they say you can go into shock within two hours, or

maybe 24 hours, or maybe it can happen at anytime after 24 hours even

weeks, so keep your patients in the waiting room for 2 hours. Somehow

the credibility of the study and their recommendations is in question

when I read it.

I do not mean to diminish the valid concerns of the group members, we

should all be informed and that is the purpose of this group, and it

does it very well. I was very concerned when I first learned of this

" warning " , and I turned to this group for preliminary information.

This is all my opinion and for me, Xolair vs. benefits vs. " possible "

adverse reactions, Xolair is a no brainer and I am totally

comfortable self injecting at home. If my Dr requires me to respond

to the clinic and wait for two hours, I will be very disappointed, it

will alter my life significantly, but I will comply. I believe Xolair

has literally saved my life.

Ron

[Guest guest]

I think part of the problem is that people define an anaphylactic reaction

as the same as anaphylactic shock. There are degrees of anaphylactic

reactions and only the most severe is anaphylactic shock. I wonder if this

is why we see a knee-jerk reaction from man doctors.

This is the definition from MedicineNet.com -

" Anaphylaxis refers to a rapidly developing and serious allergic reaction

that affects a number of different areas of the body at one time. Severe

anaphylactic reactions can be fatal. Most people experience

<http://www.medicinenet.com/script/main/art.asp?articlekey=6748> allergy

symptoms only as a minor annoyance. However, a small number of allergic

people are susceptible to a reaction that can lead to shock or even death.

Fortunately, anaphylaxis is rare. The death rate from anaphylaxis is about 1

out of every 2.5 million people per year.

Anaphylaxis is often triggered by substances that are injected or ingested

and thereby gain access into the blood stream. An explosive reaction

involving the skin, lungs, nose, throat, and gastrointestinal tract can then

result. Although severe cases of anaphylaxis can occur within seconds or

minutes of exposure and be fatal if untreated, many reactions are milder and

can be ended with prompt medical therapy. "

WebMD said that 48 individuals had an anaphylactic reaction to Xolair but

only 15% (7.2 people?) of those needed hospitalization. So the number is

really small.

I have had 6 anaphylactic reactions to egg, penicillin, propafal

(anesthesia) and allergy sensitizing shots. So I always have at least 2

epi-pens near me at all times. I have had a delayed anaphylactic that took 3

days before it was recognized as an anaphylactic reaction - I was wheezing

for 2 days with a minor rash. On the third day my Peak Flow was at 50% and

the rash had gotten much more intense. A shot of epi and prednisone and

benadryl for 5 days was what I got to stop it and bring it under control.

Thankfully I have never had it bad enough to be classified as anaphylactic

shock.

One of my first symptoms of anaphylaxis was a strong sense of doom and

disorientation. I have heard from numerous others that they too felt this.

So this might be a precursor to watch for. I have warned my family and

friends that if I seem not myself and then seem to have a change in

breathing to give me my epi and then call 911. My older kids know this too.

My 9 yr old daughter has had severe food allergies since an infant so she

always carries epi-pens too. They have used the trainers and have an idea of

how to do it. The kids know they are not to touch them unless it is a true

emergency though and have a healthy respect for them.

I had an airborne exposure to egg two weeks ago and had no reaction. I

credit this to Xolair. I had surgery last week, including packing in my

sinuses for 3 days, and had no issues whatsoever with my asthma including

after effects for the anesthesia, or the pain meds. This was a first for me

in 25 years. I credit this to Xolair.

Since starting Xolair I have been able to increase the doses of my allergy

shots at a normal rate. Over the past 20 years, I have attempted allergy

shots 4 different times, only to start having reactions once we got to the

third of five bottles. We have tried all sorts of tricks - including

epi-rinse and delayed release. We found that if I stayed at the same level

for 3 doses and no more than one set of allergy shots a week, I could move

up a level. After my second shot of Xolair I was able to increase the dosage

each visit and even come twice a week. I am 5 doses away from maintenance!

This has been remarkable - thanks to Xolair.

For me, though the Xolair has reduced my asthma to very manageable, the

biggest benefit is that it has reduced my risk of anaphylaxis to many other

items. Am I worried about the increased risk from getting the shot? No way.

My allergist makes me wait 30 minutes after allergy shots, and makes me wait

30 minutes after my Xolair shot. I think she feels I am at much greater risk

from my allergy shots than the Xolair shot. She has not changed a thing for

me since the Black Box warning. Thank you!

B.

[Guest guest]

Hello All, my name is Laurie and I am new to the group. I have been

trying to go through a lot of the old posts. Thank you Doug for

sharing post 4824. It really puts things in perspective. In my quest

to find a group like yours I had to weed through the media frenzy

black box articles. Dude, if I had read these sensationalized

articles to make my decision to start Xolair that would have been

baaad!

I am a cancer survivor as well so there were other factors in my

decision to start Xolair.

I have asthma/allergies since I was a kid. Back then I was on a

wicked drug called marax did anyone here ever take that stuff? They

found out I had asthma when I was 3 and had to stay in the hospital

in an oxygen tent with pneumonitis.

I would say my Asthma was moderate until I moved from Orange County

to Thousand Oaks, the name says it. There are lots of trees and hills

with dirt.

8/05 I went to Jersey and New York to visit my boyfriend's family.

The humidity did a number on my asthma. The day we went New York I

felt like I was suffocating in the moldy subway tunnels. It was on

this day my husband proposed to me in front of the Statue of Liberty.

When I came home from this trip I had pneumonia. From that point on I

was on Pred. At 50 Mg's I would lose it. When my doc put me on 50 I

told her I felt like I was going crazy and that I would never go on

50 mg's again!

Famous last words I went up to 80mgs at least this was after my

wedding.

The evil candy made me anxious, angry, argumentative, hyper (I'm

already hyper as it is.) speed in my car and have major road rage. I

was like someone on speed I would stay up all night and do major

projects. I have been off the pred since 02/07. Everytime my doc

would give me a script or increase my pred I would give her the evil

look of protest. I had my first Xolair 04/06/2007. It is my hope like

so many of you to live life pred-free.

I am grateful to have found such an informative and supportive group.

I have faith that I will respond well to the Xolair.

Patiently waiting,

Laurie

>> If you had a serious reaction before, I can see how you are

> frightened. Follow carefully your doctor's instructions and carry

and

> epi pen with you. It would be a shame to stop taking xolair and have

> to go back on presnisone (if you had to take it before)

>

> Pred is nasty stuff. Sure, it helps us breathe but the side effects

> can be extremely bad if we have to take it for long periods of time.

> (read my previous post #4824)

>

> Personally, I have been on Xolair for over 3.5 years and have not

had

> one side effect. You can't even tell where they gave the shot 5

> minutes later.

>

> My doctor STILL makes me wait 30 minutes but is very adamant about

us

> carrying an epi pen. For those who have had any kind of reaction in

> the past, he is even more picky. He makes them wait an hour and have

> that epi pen closely next to their sides for a full day.

>

> We are getting a new doctor in July. I will see what his opinion is.

> He might be of the opinion to make us wait 2 hours. If that is the

> case, I will have to completely re arrange my schedule.

>

> Doug

> Group founder

> Co-owner-moderator

>

[Guest guest]

We had several long discussions of the Feb. 22 FDA warning after it

came out. You can read these discussions by going back to messages #4359

to #4468 and #4526-4545.

Fran

>

> Years ago I was given ACTH by an emergency room doctor whenever I had

> an asthma attack. It releaved me immediately until after a couple of

> years and up to twelve shots, when I started to turn black and had a

> terrible time breathing. They stopped it but my asthma was so bad

that

> I almost died.

> I am doing well on Xolair, have had 40 shots (one a month) to date

but

> now I am deathly afraid of a reaction. I would like to know how

other

> people feel about the changes, if any, they have had since starting

> Xolair. I have had several changes but do not know if Xolair is the

> cause or not, such as occassional arm and leg cramps, change in bowel

> movements and occassional trouble sleeping.

> How frightened are you about the news??

>

[Guest guest]

Welcome to the group! Thanks for sharing and let us know how you do

w/ Xolair.

Addy

Group co-owner

--- In , " sweetliberty1776 " <laurie@...>

wrote:

>

> Hello All, my name is Laurie and I am new to the group. I have been

> trying to go through a lot of the old posts. Thank you Doug for

> sharing post 4824. It really puts things in perspective. In my

quest

> to find a group like yours I had to weed through the media frenzy

> black box articles. Dude, if I had read these sensationalized

> articles to make my decision to start Xolair that would have been

> baaad!

>

> I am a cancer survivor as well so there were other factors in my

> decision to start Xolair.

>

> I have asthma/allergies since I was a kid. Back then I was on a

> wicked drug called marax did anyone here ever take that stuff?

They

> found out I had asthma when I was 3 and had to stay in the hospital

> in an oxygen tent with pneumonitis.

>

> I would say my Asthma was moderate until I moved from Orange

County

> to Thousand Oaks, the name says it. There are lots of trees and

hills

> with dirt.

>

> 8/05 I went to Jersey and New York to visit my boyfriend's family.

> The humidity did a number on my asthma. The day we went New York I

> felt like I was suffocating in the moldy subway tunnels. It was on

> this day my husband proposed to me in front of the Statue of

Liberty.

> When I came home from this trip I had pneumonia. From that point on

I

> was on Pred. At 50 Mg's I would lose it. When my doc put me on 50

I

> told her I felt like I was going crazy and that I would never go on

> 50 mg's again!

> Famous last words I went up to 80mgs at least this was after my

> wedding.

>

> The evil candy made me anxious, angry, argumentative, hyper (I'm

> already hyper as it is.) speed in my car and have major road rage.

I

> was like someone on speed I would stay up all night and do major

> projects. I have been off the pred since 02/07. Everytime my doc

> would give me a script or increase my pred I would give her the

evil

> look of protest. I had my first Xolair 04/06/2007. It is my hope

like

> so many of you to live life pred-free.

>

>

> I am grateful to have found such an informative and supportive

group.

> I have faith that I will respond well to the Xolair.

>

> Patiently waiting,

>

> Laurie

>

>

>

>

> >> If you had a serious reaction before, I can see how you are

> > frightened. Follow carefully your doctor's instructions and carry

> and

> > epi pen with you. It would be a shame to stop taking xolair and

have

> > to go back on presnisone (if you had to take it before)

> >

> > Pred is nasty stuff. Sure, it helps us breathe but the side

effects

> > can be extremely bad if we have to take it for long periods of

time.

> > (read my previous post #4824)

> >

> > Personally, I have been on Xolair for over 3.5 years and have not

> had

> > one side effect. You can't even tell where they gave the shot 5

> > minutes later.

> >

> > My doctor STILL makes me wait 30 minutes but is very adamant

about

> us

> > carrying an epi pen. For those who have had any kind of reaction

in

> > the past, he is even more picky. He makes them wait an hour and

have

> > that epi pen closely next to their sides for a full day.

> >

> > We are getting a new doctor in July. I will see what his opinion

is.

> > He might be of the opinion to make us wait 2 hours. If that is the

> > case, I will have to completely re arrange my schedule.

> >

> > Doug

> > Group founder

> > Co-owner-moderator

> >

>

[Guest guest]

THanks for posting this Fran!

--- In , " tiredofsteroids " <sitesee@...>

wrote:

>

> We had several long discussions of the Feb. 22 FDA warning after it

> came out. You can read these discussions by going back to messages

#4359

> to #4468 and #4526-4545.

> Fran

>

> --- In , " dhorwitzs " <azhorwitzs@>

wrote:

> >

> > Years ago I was given ACTH by an emergency room doctor whenever I

had

> > an asthma attack. It releaved me immediately until after a

couple of

> > years and up to twelve shots, when I started to turn black and

had a

> > terrible time breathing. They stopped it but my asthma was so

bad

> that

> > I almost died.

> > I am doing well on Xolair, have had 40 shots (one a month) to

date

> but

> > now I am deathly afraid of a reaction. I would like to know how

> other

> > people feel about the changes, if any, they have had since

starting

> > Xolair. I have had several changes but do not know if Xolair is

the

> > cause or not, such as occassional arm and leg cramps, change in

bowel

> > movements and occassional trouble sleeping.

> > How frightened are you about the news??

> >

>

[Guest guest]

OK, could you try not to depress the rest of us by saying you're

working out so much and not losing any weight? I just started

working up to 30min a day. I am so disheartened!

Addy

who USED to be a size SIX

> > >

> > > Years ago I was given ACTH by an emergency room

> > doctor whenever I had

> > > an asthma attack. It releaved me immediately

> > until after a couple of

> > > years and up to twelve shots, when I started to

> > turn black and had a

> > > terrible time breathing. They stopped it but my

> > asthma was so bad

> > that

> > > I almost died.

> > > I am doing well on Xolair, have had 40 shots (one

> > a month) to date

> > but

> > > now I am deathly afraid of a reaction. I would

> > like to know how

> > other

> > > people feel about the changes, if any, they have

> > had since starting

> > > Xolair. I have had several changes but do not

> > know if Xolair is the

> > > cause or not, such as occassional arm and leg

> > cramps, change in bowel

> > > movements and occassional trouble sleeping.

> > > How frightened are you about the news??

> > >

> >

> >

> >

>

>

> __________________________________________________

>

[Guest guest]

<I have been

> trying to go through a lot of the old posts. Thank you Doug for

> sharing post 4824. It really puts things in perspective. >

Laurie,

Welcome to our group and thank you for the kind words. I started this

group 3.5 years ago when I started taking Xolair. There was NO

support group, so I created this one. Since then, we have grown to

just over 400 members and have been a source of information,

encouragement and support.

It is our prayer that you will have great results just like we did.

Doug

Group-co owner

co-moderator

[Guest guest]

Thanks for that very imformative post. I appreciate

it.

J.

--- Belsky <crdb@...> wrote:

> I think part of the problem is that people define an

> anaphylactic reaction

> as the same as anaphylactic shock. There are degrees

> of anaphylactic

> reactions and only the most severe is anaphylactic

> shock. I wonder if this

> is why we see a knee-jerk reaction from man doctors.

>

> This is the definition from MedicineNet.com -

> " Anaphylaxis refers to a rapidly developing and

> serious allergic reaction

> that affects a number of different areas of the body

> at one time. Severe

> anaphylactic reactions can be fatal. Most people

> experience

>

<http://www.medicinenet.com/script/main/art.asp?articlekey=6748>

> allergy

> symptoms only as a minor annoyance. However, a small

> number of allergic

> people are susceptible to a reaction that can lead

> to shock or even death.

> Fortunately, anaphylaxis is rare. The death rate

> from anaphylaxis is about 1

> out of every 2.5 million people per year.

>

> Anaphylaxis is often triggered by substances that

> are injected or ingested

> and thereby gain access into the blood stream. An

> explosive reaction

> involving the skin, lungs, nose, throat, and

> gastrointestinal tract can then

> result. Although severe cases of anaphylaxis can

> occur within seconds or

> minutes of exposure and be fatal if untreated, many

> reactions are milder and

> can be ended with prompt medical therapy. "

>

> WebMD said that 48 individuals had an anaphylactic

> reaction to Xolair but

> only 15% (7.2 people?) of those needed

> hospitalization. So the number is

> really small.

>

> I have had 6 anaphylactic reactions to egg,

> penicillin, propafal

> (anesthesia) and allergy sensitizing shots. So I

> always have at least 2

> epi-pens near me at all times. I have had a delayed

> anaphylactic that took 3

> days before it was recognized as an anaphylactic

> reaction - I was wheezing

> for 2 days with a minor rash. On the third day my

> Peak Flow was at 50% and

> the rash had gotten much more intense. A shot of epi

> and prednisone and

> benadryl for 5 days was what I got to stop it and

> bring it under control.

> Thankfully I have never had it bad enough to be

> classified as anaphylactic

> shock.

>

> One of my first symptoms of anaphylaxis was a strong

> sense of doom and

> disorientation. I have heard from numerous others

> that they too felt this.

> So this might be a precursor to watch for. I have

> warned my family and

> friends that if I seem not myself and then seem to

> have a change in

> breathing to give me my epi and then call 911. My

> older kids know this too.

> My 9 yr old daughter has had severe food allergies

> since an infant so she

> always carries epi-pens too. They have used the

> trainers and have an idea of

> how to do it. The kids know they are not to touch

> them unless it is a true

> emergency though and have a healthy respect for

> them.

>

> I had an airborne exposure to egg two weeks ago and

> had no reaction. I

> credit this to Xolair. I had surgery last week,

> including packing in my

> sinuses for 3 days, and had no issues whatsoever

> with my asthma including

> after effects for the anesthesia, or the pain meds.

> This was a first for me

> in 25 years. I credit this to Xolair.

>

> Since starting Xolair I have been able to increase

> the doses of my allergy

> shots at a normal rate. Over the past 20 years, I

> have attempted allergy

> shots 4 different times, only to start having

> reactions once we got to the

> third of five bottles. We have tried all sorts of

> tricks - including

> epi-rinse and delayed release. We found that if I

> stayed at the same level

> for 3 doses and no more than one set of allergy

> shots a week, I could move

> up a level. After my second shot of Xolair I was

> able to increase the dosage

> each visit and even come twice a week. I am 5 doses

> away from maintenance!

> This has been remarkable - thanks to Xolair.

>

> For me, though the Xolair has reduced my asthma to

> very manageable, the

> biggest benefit is that it has reduced my risk of

> anaphylaxis to many other

> items. Am I worried about the increased risk from

> getting the shot? No way.

> My allergist makes me wait 30 minutes after allergy

> shots, and makes me wait

> 30 minutes after my Xolair shot. I think she feels I

> am at much greater risk

> from my allergy shots than the Xolair shot. She has

> not changed a thing for

> me since the Black Box warning. Thank you!

>

> B.

>

>

> [Non-text portions of this message have been

> removed]

>

>

__________________________________________________

[Guest guest]

I know! I am ready to just throw in the towel! I

started walking back in December at the Riverwalk. It

was about 2 1/2 miles. Never lost anything. So in

March I joined a gym and really kicked it up. I do 20

min on the treadmill and then either 15 on the

eliptical or bike. Plus weight training because once

you build your muscles up you metabolism kicks in and

you start burning more fat. I have lost 1 pound!!!!! I

go 5 days a week. I have a trainer helping me too.

Hopefully in the next few weeks I will start seeing

some results. I have never been a size 6 but I have

never been this heavy except when I was pregnant! But

at least I can breathe when I am doing it.

J.

--- pyle456 <coachmac@...> wrote:

> OK, could you try not to depress the rest of us by

> saying you're

> working out so much and not losing any weight? I

> just started

> working up to 30min a day. I am so disheartened!

>

> Addy

> who USED to be a size SIX

>

>

> > > >

> > > > Years ago I was given ACTH by an emergency

> room

> > > doctor whenever I had

> > > > an asthma attack. It releaved me immediately

> > > until after a couple of

> > > > years and up to twelve shots, when I started

> to

> > > turn black and had a

> > > > terrible time breathing. They stopped it but

> my

> > > asthma was so bad

> > > that

> > > > I almost died.

> > > > I am doing well on Xolair, have had 40 shots

> (one

> > > a month) to date

> > > but

> > > > now I am deathly afraid of a reaction. I

> would

> > > like to know how

> > > other

> > > > people feel about the changes, if any, they

> have

> > > had since starting

> > > > Xolair. I have had several changes but do not

> > > know if Xolair is the

> > > > cause or not, such as occassional arm and leg

> > > cramps, change in bowel

> > > > movements and occassional trouble sleeping.

> > > > How frightened are you about the news??

> > > >

> > >

> > >

> > >

> >

> >

> > __________________________________________________

> >

[Guest guest]

I can appreciate the frustration you all are feeling over the weight

thing. Apparently (and I'm not a doctor or a nurse) there is

something that can happen to the pancreas (?) ... something about

beta cells (???) that affects the body's ability to lose weight after

steroids. My endocrinologist explained it but I was only half there

at the time. I was on steroids, small doses, quite frequently for

many years (10 ???) and after a very bad episode about 25 years ago

of going into the first stage of starvation where the body's organs

begin to break down (ketosis? there's a word for it - maybe a nurse

could fill me in on the correct term) I threw in the towel on

dieting. I ate what I wanted and all I wanted and yes it shows.

Those low blood sugar episodes are scarey - I was so disoriented I

actually didn't even know where I was.

Ok, a few years ago I found I had hypothyroidism, was treated, began

going to a swimming pool for arthritis classes occasionally and lost

15 pounds w/o really trying. Maybe it was because I was so tired I

didn't eat as much and grabbed carrots or apples instead of cake,

candy, cookies for snacks. Yes, I was hungry part of the time but it

was ok hungry.

I just had a brief rerun w/steroids and zip there goes my weight up

again! Partly I find I have to develop an awareness of having had

enough to eat ... otherwise I tend to " eat the tablecloth. " Denial

of food is the pits so it just has to be " ok, I've had enough,

there's more food I can have later if I want it. " No good to punish

myself.

Maybe there's something a doctor can help you with; that is, if

he/she understands what has happened to you through the steroid

treatment. Mine recommended carrying beef jerky around and hard

sugar candies for emergency. Admittedly that was not enough to

satisfy me, though.

I'm with you on this - it's a catch 22 - but hoping that eventually

Xolair will kick in and I will feel enough better to become more

active and less dependent on eating.

Best to all.

>

> OK, could you try not to depress the rest of us by saying you're

> working out so much and not losing any weight? I just started

> working up to 30min a day. I am so disheartened!

>

> Addy

> who USED to be a size SIX

>

As I said

> > before the only side affect for me is extreme

> > sleepiness for a few days and the 15 pound wieght gain

> > I have experienced. (Which is the worst thing for me.

> > Despite working out every day for 1 1/2 hours I have

> > not lost one pound!!! Thats 30 minutes of cardio plus

> > weight training. Arg!!)

> >

> > Jeannie

> >

[Guest guest]

I'm finally losing weight after being off steroids for a little over a year.

I was so frustrated, because I really thought once the prednisone stopped,

I'd drop pounds like crazy, because I've always been a healthy eater.

A little after the one year mark of no steroids, I noticed that the weight

started to come off. For a while it was coming off FAST!

I don't know about anyone else, but I've noticed that the tiniest bit of

added sodium in your diet will keep those prednisone pounds on you. I've

never added salt to any of my food, but once I started watching the sodium

levels in my food (right down to my breakfast cereal) the more weight I was

losing. Everyone needs a little salt in their diet to function properly,

but most people are way over the daily recommended amount. Salt is just in

everything.

Hope this helps someone else as much as it's helped me.

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

From: instdesgn1

Date: 04/16/07 07:31:10

Subject: [ ] Re: Future Reactions

I can appreciate the frustration you all are feeling over the weight

thing. Apparently (and I'm not a doctor or a nurse) there is

something that can happen to the pancreas (?) ... something about

beta cells (???) that affects the body's ability to lose weight after

steroids. My endocrinologist explained it but I was only half there

at the time. I was on steroids, small doses, quite frequently for

many years (10 ???) and after a very bad episode about 25 years ago

of going into the first stage of starvation where the body's organs

begin to break down (ketosis? there's a word for it - maybe a nurse

could fill me in on the correct term) I threw in the towel on

dieting. I ate what I wanted and all I wanted and yes it shows.

Those low blood sugar episodes are scarey - I was so disoriented I

actually didn't even know where I was.

Ok, a few years ago I found I had hypothyroidism, was treated, began

going to a swimming pool for arthritis classes occasionally and lost

15 pounds w/o really trying. Maybe it was because I was so tired I

didn't eat as much and grabbed carrots or apples instead of cake,

candy, cookies for snacks. Yes, I was hungry part of the time but it

was ok hungry.

I just had a brief rerun w/steroids and zip there goes my weight up

again! Partly I find I have to develop an awareness of having had

enough to eat ... otherwise I tend to " eat the tablecloth. " Denial

of food is the pits so it just has to be " ok, I've had enough,

there's more food I can have later if I want it. " No good to punish

myself.

Maybe there's something a doctor can help you with; that is, if

he/she understands what has happened to you through the steroid

treatment. Mine recommended carrying beef jerky around and hard

sugar candies for emergency. Admittedly that was not enough to

satisfy me, though.

I'm with you on this - it's a catch 22 - but hoping that eventually

Xolair will kick in and I will feel enough better to become more

active and less dependent on eating.

Best to all.

>

> OK, could you try not to depress the rest of us by saying you're

> working out so much and not losing any weight? I just started

> working up to 30min a day. I am so disheartened!

>

> Addy

> who USED to be a size SIX

>

As I said

> > before the only side affect for me is extreme

> > sleepiness for a few days and the 15 pound wieght gain

> > I have experienced. (Which is the worst thing for me.

> > Despite working out every day for 1 1/2 hours I have

> > not lost one pound!!! Thats 30 minutes of cardio plus

> > weight training. Arg!!)

> >

> > Jeannie

> >