Re: Leap of Faith??

[Guest guest]

Hi There!!!!

Gosh, I wish I could tell you what it's like to wean off of steroids....

There are no words!!!! I started Xolair on 2/17/11 and have been

hive/angioedema free since a few days after the injections. I do not have

severe

asthma but most on this board who are using it say it works for asthma as well.

I'm down to 8mg of prednisone per day.... I've been using it every single

day for the last 3 years... it will be a long hard battle for me to get off

of this drug. It's caused so much damage that trying to tell you all

would make this a book to read!!!!

I'm grateful for xolair... the side effects are rare... with prednisone, we

KNOW the side effects. However, the full extent of the side effects of

steroids for me are 10X worse when weaning off.... I have to wean VERY, VERY

slowly as my adrenal glands are now the size of raisins.

In my personal experience I would say to do anything... ANYTHING you can do

to get off of the steroids....Once I get off of these things (which will

probably take a good year), I will NEVER go back on them again!!!!!!!

I wish you the very best and hope all goes well for you!!!!

xo,

In a message dated 3/1/2011 8:16:53 P.M. Eastern Standard Time,

lunaballoona@... writes:

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.

[Guest guest]

>

> 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]

,

I have what I call Severe Allergic Sinus Disease. I am allergic to something

like 55 things, including numerous kinds of pollens, dust mites, and molds. I

have been taking Xolair since 2003.

prior to Xolair, I required 9-11 rounds of prednisone tapers and antibiotics

every year. I would get frequent sinus infections triggered by allergic

responses which would normally result in asthma episodes and require me to be on

lots of meds. This went on for years.

Since I started taking Xolair, I normally have TWO episodes a year and I rarely

need even an antihistamine during the day. I'll never forget the day I looked in

the mirror, about 3 months after starting Xolair and saw that my face looked

like my face, not some prednisone-Cushingoid-likeness of my face.

Each of us has to do our own risk-benefit analysis any time we consider taking a

new drug. I don't know what else we will know about Xolair down the road, but I

already know that prednisone has really damaged my body and all my doctors want

me to take as little of it as possible.

What I don't miss about regularly taking pred (besides my pred face): I don't

miss the night sweats, the mood swings, the cravings, the frantic sleepless

nights.

Good luck to you. Let us know what you decide.

Addy

Group Co-owner

>

> 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.

>

[Guest guest]

Yes. Yes. Yes. Halleluia. We have to spread the word to other sufferes.

Beaming for you.

Sent from my BlackBerry® smartphone

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

From: heartabrasions@...

Sender:

Date: Tue, 1 Mar 2011 20:31:34

< >

Reply-

Subject: Re: [ ] Leap of Faith??

Hi There!!!!

Gosh, I wish I could tell you what it's like to wean off of steroids....

There are no words!!!! I started Xolair on 2/17/11 and have been

hive/angioedema free since a few days after the injections. I do not have

severe

asthma but most on this board who are using it say it works for asthma as well.

I'm down to 8mg of prednisone per day.... I've been using it every single

day for the last 3 years... it will be a long hard battle for me to get off

of this drug. It's caused so much damage that trying to tell you all

would make this a book to read!!!!

I'm grateful for xolair... the side effects are rare... with prednisone, we

KNOW the side effects. However, the full extent of the side effects of

steroids for me are 10X worse when weaning off.... I have to wean VERY, VERY

slowly as my adrenal glands are now the size of raisins.

In my personal experience I would say to do anything... ANYTHING you can do

to get off of the steroids....Once I get off of these things (which will

probably take a good year), I will NEVER go back on them again!!!!!!!

I wish you the very best and hope all goes well for you!!!!

xo,

In a message dated 3/1/2011 8:16:53 P.M. Eastern Standard Time,

lunaballoona@... writes:

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.

[Guest guest]

i had many similar symptoms that you described. i had several sinus surgeries

and despite it all, i dealt with sinus infection after sinus infection,

countless rounds of bronchitis and i was sucking down more albuterol than an

adult sized elephant should. i would taper down my pred and within 2-3 weeks, i

was back on it. my eczema was out of control.

enter xolair. 2003? 2004? i'm not sure. i was the first on long island to get

it. that's all i remember.

it took about 6 months to see benefits from it, and 12 months for the full

effect. i suddenly could breath. i could do stuff. i went mountain biking. i

could go outside without my eyes swelling nearly shut. my sinus

infections/bronchitis still haunted me, but not nearly as often. i still had

eczema, but not nearly as severe, and the flares were fewer.

i honestly didn't realize just how great the xolair was until i was taken off it

b/c i got pregnant. my dr felt there wasn't enough known about it and there was

no 3rd generation data, so she stopped it for the duration of the pregnancy. i

ended up on prednisone for 8 of the 9months. i had forgotten how horrible i

felt before the xolair. and how awful constant prednisone made me feel.

2 weeks after i delivered, i was allowed to start taking xolair again. It's been

4.5 months back on the xolair. i'm suspecting it will take a while longer to

build back up again in my system, but i'm breathing better than i have in a long

long time. my eczema is sill a bit of a mess, but it's healing. i'm down to 5mg

of prednisone - not because i need it for my asthma/eczema, but b/c my body is

having some issues coming off it.

i'm not sure what shock you're referring to with the xolair. personally, they

feel just as any other shot would feel. i have never had any side effects except

some bruising at the injection site, but i'm an easy bruiser.

if i were given a choice of prednisone or xolair, i'd pick xolair. every time.

please let us know what you decide

heather

>

> 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.

>

[Guest guest]

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

>

>

>

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

>

>

>

>

>

>

[Guest guest]

,

It is awesome that you are doing so well after only a few shots.

Remember, it took some of us (including myself) up to a year and more to see any

improvement at all.

At 6 months I told my doctor I wanted to quit but I took his advice and stayed

the course. I am so glad I did.

I have now been off pred since 2004

Doug