Re: Re: Leap of Faith??

[Guest guest]

, Xolair has been a God send. The help with my allergies has been

remarkable.. Without the Xolair I itch uncontrollably. I will itch all over. My

other allergies are still terrible. I have the swollen and itchy eyes 24/7. It

never stops. The Xolair helps me to tolerate better. It has help with the

triggers for my asthma. I have had good results. I was skeptical at first but

that is normal. You will not know unless you try it.

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

From: Db <uca79iii@...>

xolair users < >

Sent: Wed, 02 Mar 2011 01:53:12 -0000 (UTC)

Subject: [ ] Re: Leap of Faith??

>

> Hi There,

>

> I have not posted before, but have been reading your post for awhile to gather

information while in the process of trying to decide to try Xolair or not.

>

> I have had severe sinusitis and allergies for about 12 years now - adult

onset. I have had 2 sinus surgeries and been through all of the medications more

than once - most of which do not help at all with the acception of Advair that

helps a lot.

>

> I have been MUCH better in the past 3 years, but not 'well'. I still suffer

with allergies and wheezing, etc. The usual stuff...

>

> I am steriod dependent and have been for about 11 years. I am on a low dose

of prednisone but I have to take it daily. I can't breath without it at this

point.

>

> I want to try xolair in hopes of feeling better and being able to get off the

prednisone, but I am fearful of the possible 'shock' that I keep reading about

everywhere there is anything written about this drug.

>

> I am also concerned about other possible side effects and that I could have to

deal with this for a year and it may not even help.

>

> I would like to know for those of you with severe sinus issues that then

triggers the asthma issues.... how it has worked for you.

>

> I feel like I am trying to decide between the lesser of two evils... xolair vs

prednisone... will it work for me when NOTHING else has?

>

> I appreciate your feedback. I have finally been approved for the medication

through my insurance after about 7 years now... so I need to make my decision

within the next week or so or I will lose the authorization.

>

> Thanks Again!

> christine in Oklahoma

> PS Spring is trying to 'sprung' here and I am really feeling it even on the

prednisone without increasing the dose I am not doing so hot.

>

Hi ,

I am your neighbor in northwest Arkansas. I was the first person in the state to

get Xolair in 2003.

I had been on 40 mg of Prednisone a day for years and was tearing up my body. It

had made me Type II diabetic, bi polar II, gain up to 210 pounds, cataracts, and

the disks in my neck were effected so bad that I had to have two fusion

surgeries. I was at my wits end with steroids and was in desperate need of

help.

Prednisone is the evil drug NOT xolair!! I know that for a fact!!

Xolair was completely new in 2003 and I had no websites to go to for advice so I

started this one.

I (without hesitation)told my doctor " Yes, please, anything to get me off

prednisone. " I can honestly say that Xolair saved my life.

I am sure that many others will tell you the same thing in this group.

Doug

Group founder

Breathing down to his toes WITHOUT Prednisone )

[Guest guest]

Hi Cristine,

I went on xolair mainly because of my sinus problems.  I have moderate asthma

but I was a charter member of the Sinus Infection of the month club.  I had

sinus infections all the time.  I had one surgery in 1992 because I had a low

grade infection for 6 months that would not react to antibiotics.  But, since I

have been on xolair I have much less frequent sinus infections (2 times a year)

and when I do get them they are less severe.  I have not taken prednisone since

I have been on xolair and it has improved my lung capacity.

Bethesda, MD

 

________________________________

From: Db <uca79iii@...>

Sent: Tue, March 1, 2011 8:53:12 PM

Subject: [ ] Re: Leap of Faith??

 

>

> Hi There,

>

> I have not posted before, but have been reading your post for awhile to gather

>information while in the process of trying to decide to try Xolair or not.

>

> I have had severe sinusitis and allergies for about 12 years now - adult

onset.

>I have had 2 sinus surgeries and been through all of the medications more than

>once - most of which do not help at all with the acception of Advair that helps

>a lot.

>

> I have been MUCH better in the past 3 years, but not 'well'. I still suffer

>with allergies and wheezing, etc. The usual stuff...

>

> I am steriod dependent and have been for about 11 years. I am on a low dose of

>prednisone but I have to take it daily. I can't breath without it at this

point.

>

> I want to try xolair in hopes of feeling better and being able to get off the

>prednisone, but I am fearful of the possible 'shock' that I keep reading about

>everywhere there is anything written about this drug.

>

> I am also concerned about other possible side effects and that I could have to

>deal with this for a year and it may not even help.

>

> I would like to know for those of you with severe sinus issues that then

>triggers the asthma issues.... how it has worked for you.

>

> I feel like I am trying to decide between the lesser of two evils... xolair vs

>prednisone... will it work for me when NOTHING else has?

>

> I appreciate your feedback. I have finally been approved for the medication

>through my insurance after about 7 years now... so I need to make my decision

>within the next week or so or I will lose the authorization.

>

> Thanks Again!

> christine in Oklahoma

> PS Spring is trying to 'sprung' here and I am really feeling it even on the

>prednisone without increasing the dose I am not doing so hot.

>

Hi ,

I am your neighbor in northwest Arkansas. I was the first person in the state to

get Xolair in 2003.

I had been on 40 mg of Prednisone a day for years and was tearing up my body. It

had made me Type II diabetic, bi polar II, gain up to 210 pounds, cataracts, and

the disks in my neck were effected so bad that I had to have two fusion

surgeries. I was at my wits end with steroids and was in desperate need of help.

Prednisone is the evil drug NOT xolair!! I know that for a fact!!

Xolair was completely new in 2003 and I had no websites to go to for advice so I

started this one.

I (without hesitation)told my doctor " Yes, please, anything to get me off

prednisone. " I can honestly say that Xolair saved my life.

I am sure that many others will tell you the same thing in this group.

Doug

Group founder

Breathing down to his toes WITHOUT Prednisone )

[Guest guest]

Thank you again group founders. You give us the courage to take the leap.

Sheila

Sent from my BlackBerry® smartphone

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

From: Gwendolyn Rafter <gwen5052@...>

Sender:

Date: Wed, 2 Mar 2011 02:22:55

xolair users< >

Reply-

Subject: Re: [ ] Re: Leap of Faith??

, Xolair has been a God send. The help with my allergies has been

remarkable.. Without the Xolair I itch uncontrollably. I will itch all over. My

other allergies are still terrible. I have the swollen and itchy eyes 24/7. It

never stops. The Xolair helps me to tolerate better. It has help with the

triggers for my asthma. I have had good results. I was skeptical at first but

that is normal. You will not know unless you try it.

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

From: Db <uca79iii@...>

xolair users < >

Sent: Wed, 02 Mar 2011 01:53:12 -0000 (UTC)

Subject: [ ] Re: Leap of Faith??

>

> Hi There,

>

> I have not posted before, but have been reading your post for awhile to gather

information while in the process of trying to decide to try Xolair or not.

>

> I have had severe sinusitis and allergies for about 12 years now - adult

onset. I have had 2 sinus surgeries and been through all of the medications more

than once - most of which do not help at all with the acception of Advair that

helps a lot.

>

> I have been MUCH better in the past 3 years, but not 'well'. I still suffer

with allergies and wheezing, etc. The usual stuff...

>

> I am steriod dependent and have been for about 11 years. I am on a low dose

of prednisone but I have to take it daily. I can't breath without it at this

point.

>

> I want to try xolair in hopes of feeling better and being able to get off the

prednisone, but I am fearful of the possible 'shock' that I keep reading about

everywhere there is anything written about this drug.

>

> I am also concerned about other possible side effects and that I could have to

deal with this for a year and it may not even help.

>

> I would like to know for those of you with severe sinus issues that then

triggers the asthma issues.... how it has worked for you.

>

> I feel like I am trying to decide between the lesser of two evils... xolair vs

prednisone... will it work for me when NOTHING else has?

>

> I appreciate your feedback. I have finally been approved for the medication

through my insurance after about 7 years now... so I need to make my decision

within the next week or so or I will lose the authorization.

>

> Thanks Again!

> christine in Oklahoma

> PS Spring is trying to 'sprung' here and I am really feeling it even on the

prednisone without increasing the dose I am not doing so hot.

>

Hi ,

I am your neighbor in northwest Arkansas. I was the first person in the state to

get Xolair in 2003.

I had been on 40 mg of Prednisone a day for years and was tearing up my body. It

had made me Type II diabetic, bi polar II, gain up to 210 pounds, cataracts, and

the disks in my neck were effected so bad that I had to have two fusion

surgeries. I was at my wits end with steroids and was in desperate need of

help.

Prednisone is the evil drug NOT xolair!! I know that for a fact!!

Xolair was completely new in 2003 and I had no websites to go to for advice so I

started this one.

I (without hesitation)told my doctor " Yes, please, anything to get me off

prednisone. " I can honestly say that Xolair saved my life.

I am sure that many others will tell you the same thing in this group.

Doug

Group founder

Breathing down to his toes WITHOUT Prednisone )

[Guest guest]

Hi !!!!

YEAHHHHHHHHHHHHHHHHH for trying Xolair!!!! You will be so unbelievably

amazed!!! Please keep us updated on your progress!!!!! I'm so excited for

you!!!!

As far as the prednisone... UGH. I've been on small doses for many

years... 20mg here or there but mostly 10mg and under EVERY day for 3 years. I

never thought I was so dependent on it or that it would affect me. ONLY

after I started the xolair and started to wean down even further did I notice

the difference. I have osteoporisis now.... and the side effects of weaning

off are horrible. However, some people take it differently. I did get of

it for 1 month in November 2009... only to go back to it in December

2009... I have had very high doses of IV steroids but not since December

2010.... now weaning even 1/2 of a mg is a task!!! I'm lethargic... and my

adrenal

glands are the size of raisins

I wish you SO MUCH luck with Xolair!!! From the time I got the call from

my insurance to ship the vials to my doctor it was 1 week until I received

my injections.

BEST OF LUCK and congrats to you!!!! Please keep us updated on your

progress... I'm so excited for you because I know that you're about to get your

life back

xoxo,

In a message dated 3/2/2011 7:34:58 P.M. Eastern Standard Time,

lunaballoona@... writes:

Thank you for all of your responses, feedback and support.

I did give the consent to release the medication today so I made my

copayment and will now wait for my specialist to receive it.

I am not sure how long that process takes, but I am guessing I will have

my first dose within the next couple of weeks.

I am fortunate that I don't have a lot of bad side effects from prednisone

at this time, but I would love to be off of it before something does

happen. I have been on 5mg twice a day for many years with a burst a couple

times a year as needed.

In the beginning of my illness I was in/out of the hospital and on higher

doses but not in the past 4 years.

I do have an interesting piece of information that I wanted to share. As

odd as it may sound I needed a partial hysterectomy a little over 3 years

ago - totally unrelated to the allergies/asthma but making me miserable for

about 3-4 years... I was concerned about having surgery due to my

breathing, but I had a very good doctor and he took my asthma very seriously,

etc.

The surgery went very well - no breathing problems or anything.

After I had the surgery my asthma issues almost totally went away. I know

it doesn't make any sense and none of my doctors even for a minute thought

there was a connection, but I went from 3+ breathing treatments a day to 0

! I didn't need a breathing treatment for about 7 months after having that

surgery. I do need a treatment every now and again - like during this

pre-spring season we are having...

I still have allergies so when they really kick in my asthma rears its

ugly head so it was not a 'cure', but it sure did make a HUGE difference.

Since the surgery I have been able to exercise and sleep so much better. I have

a much more 'normal' life compared to how I was before. I am not as

exhausted just from breathing like I was before - everything was always such a

chore.

The only explanation is that the inflamation from my uterous must have

been affecting my entire system - which makes sense since asthma is a disease

of inflamation...

Anyway - just some information that is 'not the norm' but it really did

help me in more ways than one so I thought I would share that with you. It

was the best thing so far that I have ever done for myself! Who would have

thought!

Now if the xoliar works I should be like a 'normal' person soon!! Well

give or take 6-12 months!

Thanks Again!

in Oklahoma

[Non-text portions of this message have been removed]

[Guest guest]

Thank you for all of your responses, feedback and support.

 

I did give the consent to release the medication today so I made my copayment

and will now wait for my specialist to receive it.

 

I am not sure how long that process takes, but I am guessing I will have my

first dose within the next couple of weeks.

 

I am fortunate that I don't have a lot of bad side effects from prednisone at

this time, but I would love to be off of it before something does happen.  I

have been on 5mg twice a day for many years with a burst a couple times a year

as needed.

 

In the beginning of my illness I was in/out of the hospital and on higher doses

but not in the past 4 years.

 

I do have an interesting piece of information that I wanted to share.  As odd as

it may sound I needed a partial hysterectomy a little over 3 years ago - totally

unrelated to the allergies/asthma but making me miserable for about 3-4 years...

I was concerned about having surgery due to my breathing, but I had a very good

doctor and he took my asthma very seriously, etc. The surgery went very well -

no breathing problems or anything.

 

After I had the surgery my asthma issues almost totally went away. I know it

doesn't make any sense and none of my doctors even for a minute thought there

was a connection, but I went from 3+ breathing treatments a day to 0 !  I didn't

need a breathing treatment for about 7 months after having that surgery. I do

need a treatment every now and again - like during this pre-spring season we are

having...

 

I still have allergies so when they really kick in my asthma rears its ugly head

so it was not a 'cure', but it sure did make a HUGE difference. Since the

surgery I have been able to exercise and sleep so much better. I have a much

more 'normal' life compared to how I was before. I am not as exhausted just from

breathing like I was before - everything was always such a chore.

 

The only explanation is that the inflamation from my uterous must have been

affecting my entire system - which makes sense since asthma is a disease of

inflamation...

 

Anyway - just some information that is 'not the norm' but it really did help me

in more ways than one so I thought I would share that with you.  It was the best

thing so far that I have ever done for myself!  Who would have thought!

 

Now if the xoliar works I should be like a 'normal' person soon!!  Well give or

take 6-12 months!

 

Thanks Again!

in Oklahoma

 

[Guest guest]

Hi Christie!!!

Here's where we're alike... My normal average dose has been 10mg per day

divided into 2 doses. 5mg am and 5mg pm.

Some days I would alternate and do bursts of 20mg or 40mg because I

couldn't get them under control. Then, some days I would be covered from head

to toe in addition to my throat closing, stomach KILLING me, etc.... on

those days I was at the ER.

Looking back at my medication log in my phone (yes, I've kept one for 3

years)...Since November of last year my average dose has been 10mg with bursts

here and there and daily outbreaks. So, our average of steroids are around

the same even though I've had numerous bursts.

Whether you've been on low doses or high doses for numerous years, the side

effects will be the same. Every person is different and have been able to

wean more aggressively. However, I do NOT suggest anyone EVER wean off

steroids without the assistance of their doctor. It is a very, very

dangerous thing to do when someone has been on them this long, low dose or not.

Our adrenal glands make what is equivalent to about 7.5mg of steroids per

day. When we substitute it with steroids, they stop working or get lazy.

Stopping abruptly or too quickly is deadly.

I am down to 7mg per day since having my first Xolair injection. My

cortisol is 1.4 which is low. However, I can somehow feel better than I did

from jumping from 12mg to 10mg per day. I feel better right now than I did

from when I jumped from 10mg to 9mg per day. I'm weaning at about 1/2 of a

mg to 1mg per WEEK and may go even slower if symptoms start to occur again.

Every person is different but I'm experiencing fatigue, extreme fatigue,

muscle aches, joint aches, restless legs, shallow breathing and overall

exhaustion. It IS getting better than it was... but I know I have about 3-4

months before getting off of this. My doctor will check my cortisol every 4

weeks or so to see how they are kicking in (or not).

When I first had my XOLAIR injections I was tired but no other side

effects other than NO HIVES/NO SWELLING, NO ER VISITS!!!!! It's been a

miracle.

To say I suffered before Xolair is minimizing it. I know I couldn't live

like that the rest of my life. I was 50 pounds over weight and literally

was itching myself RAW!

Xolair has saved me. I go for my next 2 injections on the 14th. I'm

feeling better and better each day.

If I could express to you how much better I feel in words, I would.. but

there are no words... I'm gaining my life back one day at a time. When I

finally wean off of the steroids I will be free... free from the chains of

this miserable disease!!!! Many others on this board have weaned off much

higher doses of steroids and came out of this disease shining. Their stories

are INSPIRATIONAL to me. I am eternally grateful for this board because

reading and researching and finding this board and using all of the

information everyone here has to offer along with asking questions to everyone

and

getting real responses has helped to put me where I am today.

I'm feeling better and lost 9 pounds since 2/17/11 when I first received my

Xolair. If I can help you in anyway or answer any other questions, please

feel free to contact me. I wish you the VERY best in your decisions and

with Xolair and with fighting this disease.

xoxo,

In a message dated 3/3/2011 10:22:15 P.M. Eastern Standard Time,

lunaballoona@... writes:

I will post as I go through the process in case there are other newbies

reading and trying to decide...

What types of problems are you having when trying to wean? I haven't had

but maybe 2 burst in the past 2 years so I am steady at 10mg per day.

I know in the past when I attempted to wean off I would feel sore and

tired, but I didn't have any other issues. I would like to have an idea of what

to be prepared for so I will know the difference between the pred wean and

the xolair side effects.

I won't even think about weaning for quite some time - have to make sure

this is going to work and work well for me first then the 1mg at a time will

begin so I am thinking this could take a full year or more.

If I can't get off the pred the xoliar won't be worth it for me since the

pred controls my symptoms for the most part. I am hopeful this will do the

trick - time will tell! I want off the pred like I know everyone else does.

I am thankful I have not been on high doses for many years, but even a low

dose is worth getting off for sure.

Thanks!

>

> Hi !!!!

>

> YEAHHHHHHHHHHHHHHHHH for trying Xolair!!!! You will be so unbelievably

> amazed!!! Please keep us updated on your progress!!!!! I'm so excited

for

> you!!!!

>

> As far as the prednisone... UGH. I've been on small doses for many

> years... 20mg here or there but mostly 10mg and under EVERY day for 3

years. I

> never thought I was so dependent on it or that it would affect me. ONLY

> after I started the xolair and started to wean down even further did I

notice

> the difference. I have osteoporisis now.... and the side effects of

weaning

> off are horrible. However, some people take it differently. I did get of

> it for 1 month in November 2009... only to go back to it in December

> 2009... I have had very high doses of IV steroids but not since December

> 2010.... now weaning even 1/2 of a mg is a task!!! I'm lethargic... and

my adrenal

> glands are the size of raisins

>

> I wish you SO MUCH luck with Xolair!!! From the time I got the call from

> my insurance to ship the vials to my doctor it was 1 week until I

received

> my injections.

>

> BEST OF LUCK and congrats to you!!!! Please keep us updated on your

> progress... I'm so excited for you because I know that you're about to

get your

> life back

>

> xoxo,

>

>

>

>

> In a message dated 3/2/2011 7:34:58 P.M. Eastern Standard Time,

> lunaballoona@... writes:

>

>

>

>

> Thank you for all of your responses, feedback and support.

>

> I did give the consent to release the medication today so I made my

> copayment and will now wait for my specialist to receive it.

>

> I am not sure how long that process takes, but I am guessing I will have

> my first dose within the next couple of weeks.

>

> I am fortunate that I don't have a lot of bad side effects from

prednisone

> at this time, but I would love to be off of it before something does

> happen. I have been on 5mg twice a day for many years with a burst a

couple

> times a year as needed.

>

> In the beginning of my illness I was in/out of the hospital and on

higher

> doses but not in the past 4 years.

>

> I do have an interesting piece of information that I wanted to share. As

> odd as it may sound I needed a partial hysterectomy a little over 3

years

> ago - totally unrelated to the allergies/asthma but making me miserable

for

> about 3-4 years... I was concerned about having surgery due to my

> breathing, but I had a very good doctor and he took my asthma very

seriously, etc.

> The surgery went very well - no breathing problems or anything.

>

> After I had the surgery my asthma issues almost totally went away. I

know

> it doesn't make any sense and none of my doctors even for a minute

thought

> there was a connection, but I went from 3+ breathing treatments a day to

0

> ! I didn't need a breathing treatment for about 7 months after having

that

> surgery. I do need a treatment every now and again - like during this

> pre-spring season we are having...

>

> I still have allergies so when they really kick in my asthma rears its

> ugly head so it was not a 'cure', but it sure did make a HUGE

difference.

> Since the surgery I have been able to exercise and sleep so much better.

I have

> a much more 'normal' life compared to how I was before. I am not as

> exhausted just from breathing like I was before - everything was always

such a

> chore.

>

> The only explanation is that the inflamation from my uterous must have

> been affecting my entire system - which makes sense since asthma is a

disease

> of inflamation...

>

> Anyway - just some information that is 'not the norm' but it really did

> help me in more ways than one so I thought I would share that with you.

It

> was the best thing so far that I have ever done for myself! Who would

have

> thought!

>

> Now if the xoliar works I should be like a 'normal' person soon!! Well

> give or take 6-12 months!

>

> Thanks Again!

> in Oklahoma

>

>

>

>