Re: Nervous about starting..

[Guest guest]

>

> I know this is going to sound silly or stupid.. but insurance approved

> my Xolair and I'm going to start it next Wednesday. Thing is I'm

> extremely nervous to the point of almost having a panic attack about

> starting it. I NEED relief from my asthma symptoms and the idea of

> getting off of the steroids is definately exciting but I'm just very

> nervous.

> I know part of this is because of my Anaphylactic reaction on 11/21 to

> my allergy shots and I'm scared to death that since I'm one of those

> people whos body has a mind of it's own and truthfully NEVER does

> stuff the way it is supposed to, I'm just terrified of having another

> reaction. I talked to the RN at the pharmacy and my asthma/allergy doc

> have told me allergic reactions only occured in 1 out of 4000 patients

> on Xolair but my body tends to be the 1 in most cases!! I know this

> sounds silly, but I can name soo many times in which I've heard

> the " your a statistic " and I really don't want to be that this time!!

> Sorry if I sound whiney I just need some reassurance! My doctors

> office says they've never had a patient out of the 30 or so who are

> taking Xolair have a reaction but as I said I tend to be that

> statistic in so many other cases

>

I was scared too. It was a brand new drug just approved by

the FDA and I was the first person in the state to get it.

Now I have been on Xolair for 3 1/2 years without any problems whatsoever. The

only thing that will happen is LESS ASTHMA!

It will be ok

Doug

Group founder

Co-owner-moderator

[Guest guest]

I had a lot of trouble tolerating allergy shots after age 21. It got

to the point that I could never reach my maintenance dose and even at

half a dose I would get localized reactions and feel terrible for 2-3

days after getting my allergy shots.

I have NEVER had a problem with Xolair. Not once. I love it. It

has made all of my allergic responses decrease, not just my allergic

astham. It doesn't mean I never have trouble, but that I have

trouble less often and (usually) to less of a degree.

Good luck, take a deep breath, you can do it!

Addy

Group co-owner

--- In , " Misty Lynn " <mistylynnm@...>

wrote:

>

> I know this is going to sound silly or stupid.. but insurance

approved

> my Xolair and I'm going to start it next Wednesday. Thing is I'm

> extremely nervous to the point of almost having a panic attack

about

> starting it. I NEED relief from my asthma symptoms and the idea of

> getting off of the steroids is definately exciting but I'm just

very

> nervous.

> I know part of this is because of my Anaphylactic reaction on 11/21

to

> my allergy shots and I'm scared to death that since I'm one of

those

> people whos body has a mind of it's own and truthfully NEVER does

> stuff the way it is supposed to, I'm just terrified of having

another

> reaction. I talked to the RN at the pharmacy and my asthma/allergy

doc

> have told me allergic reactions only occured in 1 out of 4000

patients

> on Xolair but my body tends to be the 1 in most cases!! I know this

> sounds silly, but I can name soo many times in which I've heard

> the " your a statistic " and I really don't want to be that this

time!!

> Sorry if I sound whiney I just need some reassurance! My doctors

> office says they've never had a patient out of the 30 or so who are

> taking Xolair have a reaction but as I said I tend to be that

> statistic in so many other cases

>

[Guest guest]

The hardest part (to me) about the shot is standing still while the xolair goes

in as it has to be given very slowly!. I have had NO reaction of any kind to

the xolair and I just had my sixth shot. I could not tolerate the allergy shots

as I could never reach a maintenance dose and after so many tries, my allergist

gave up! I still have some asthma from time to time, but it is less often and

very easy to control.

Go for it!

Misty Lynn <mistylynnm@...> wrote:

I know this is going to sound silly or stupid.. but insurance approved

my Xolair and I'm going to start it next Wednesday. Thing is I'm

extremely nervous to the point of almost having a panic attack about

starting it. I NEED relief from my asthma symptoms and the idea of

getting off of the steroids is definately exciting but I'm just very

nervous.

I know part of this is because of my Anaphylactic reaction on 11/21 to

my allergy shots and I'm scared to death that since I'm one of those

people whos body has a mind of it's own and truthfully NEVER does

stuff the way it is supposed to, I'm just terrified of having another

reaction. I talked to the RN at the pharmacy and my asthma/allergy doc

have told me allergic reactions only occured in 1 out of 4000 patients

on Xolair but my body tends to be the 1 in most cases!! I know this

sounds silly, but I can name soo many times in which I've heard

the " your a statistic " and I really don't want to be that this time!!

Sorry if I sound whiney I just need some reassurance! My doctors

office says they've never had a patient out of the 30 or so who are

taking Xolair have a reaction but as I said I tend to be that

statistic in so many other cases

__________________________________________________

[Guest guest]

You sound exactly like I felt just before I started Xolair.

My life was a mess 2 years ago. I was completely steroid dependent, had

gone into anaphylactic shock more times than I care to think about, and have

been in full blown respiratory arrest AT HOME twice. I've literally lost

count of my hospital stays, (never mind ER trips) and I've had more than one

trip to the ICU. I was completely incapable of taking allergy shots, and I

truly felt miserable, struggling to breathe every day.

Allergic to just about EVERYTHING, I thought I'd never breathe again, work

again (I've been on Social Security Disability since 2001) or have any

semblance of normal life again. I had to terminate a pregnancy due to the

incredibly high levels of steroids I was on.

I too, felt that I would be the " one " that would react to the Xolair. In

fact, I was convinced of it. So many things cause my asthma to flare that I

was certain Xolair would set me off as well. Epinepherine is not just an

emergency medication for me, they've had to use it on me so many times, I'm

terrified that one day it won't work! Cold air, stress, perfume, chlorine,

over 20 foods, molds, pollens, dust mites, animals, formaldehyde, latex,

theophylline, penicillin, compazine and insects are just SOME of the things

that trigger attacks for me.

Unfortunately, I don't have " mild " attacks. I went from being an athletic

person with very mild asthma, to completely uncontrollable asthma seemingly

overnight at the age of 22. My attacks would seem to jump out from nowhere,

and then not settle down again. Every time I tried to wean off of steroids,

off I went again. We tried everything from allergy shots (almost killed me)

and every inhaler on the market to medrol and prednisone, to an injected

steroid called Kenelog. I came so close to being intubated so many times

that I knew 4 ER doctors by their first names, and they had worked out

treatment plans for me. One of them had worked out a technique so that we

could try to keep me from being intubated. I used to wake every hour or 2

in the middle of the night gasping for air. Twice, in full blown

respiratory arrest. Blue lips, pins and needles in my head and neck, the

whole bit.

Now, my life is incredibly different. I still need albuterol once in a

while, but I can't tell you when I last needed my nebulizer in the middle of

the night. I can walk around stores without panic, and even play outside

with my kids. My diet is different now, because I was able to do an

elimination diet on the foods that my doctor always questioned may have been

false positives on my scratch test due to my sensitive skin. I haven't been

in the hospital in almost a year. No ER trips since that hospitalization.

I can EXERCISE!! I've been to Los Angeles, Niagra Falls, DISNEY, the

Baseball Hall of Fame, Atlanta and Montreal since starting Xolair. I'd have

never left my town before for fear of having an attack in an unknown place.

My kids don't have to worry about me anymore, we get to do things as a

family. I'm OFF steroids COMPLETELY!!! I'm down to TWO medications for

asthma other than my Xolair. I still can't work, but my doc says YET! He

says maybe in another 2 years he'll be confident, after I'm done with my

allergy shots.... Yes, he believes that with the Xolair in my system, being

carefully monitored, I can take allergy shots.

I know this is a scary time for you...

But I promise... Looking back, all that fear is worth it, if I felt even

HALF as good as I do right now. I'd take that chance all over again. And

if I DID react... then at least I would have TRIED to give myself the life I

m living right now. I've literally lived through scarier, right?

Keep your chin up and know, you're not the only one like you... even if it

feels that way. We're right there with you, we've been where you are, and

we're feeling BETTER! Good luck!

~

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

From: Misty Lynn

Date: 01/05/07 19:38:57

Subject: [ ] Nervous about starting..

I know this is going to sound silly or stupid.. but insurance approved

my Xolair and I'm going to start it next Wednesday. Thing is I'm

extremely nervous to the point of almost having a panic attack about

starting it. I NEED relief from my asthma symptoms and the idea of

getting off of the steroids is definately exciting but I'm just very

nervous.

I know part of this is because of my Anaphylactic reaction on 11/21 to

my allergy shots and I'm scared to death that since I'm one of those

people whos body has a mind of it's own and truthfully NEVER does

stuff the way it is supposed to, I'm just terrified of having another

reaction. I talked to the RN at the pharmacy and my asthma/allergy doc

have told me allergic reactions only occured in 1 out of 4000 patients

on Xolair but my body tends to be the 1 in most cases!! I know this

sounds silly, but I can name soo many times in which I've heard

the " your a statistic " and I really don't want to be that this time!!

Sorry if I sound whiney I just need some reassurance! My doctors

office says they've never had a patient out of the 30 or so who are

taking Xolair have a reaction but as I said I tend to be that

statistic in so many other cases

[Guest guest]

,

Thank you once again for sharing so much with us. It is stunning to read

your experience when my own is nowhere near as severe. But more importantly,

you sharing details of these aspects helps me to understand how I am not

completely " weird " (I'm also hypersensitive to many things and have highly

sensitive skin) . Your description of what it feels like to be in such a

serious situation helps those of us who haven't walked in your shoes quite

yet. Hopefully we won't but if we do, at least we'll understand it a little

more than if you hadn't shared. Thanks again. I'm so glad you have gotten so

much relief from this medication - what a blessing! Wishing you continued

improvement.

Leena

> wrote:

> You sound exactly like I felt just before I started Xolair.

>

> My life was a mess 2 years ago. I was completely steroid dependent, had

> gone into anaphylactic shock more times ........

> Cold air, stress, perfume, chlorine,

> over 20 foods, molds, pollens, dust mites, animals, formaldehyde, latex,

> theophylline, penicillin, compazine and insects are just SOME of the

> things

> that trigger attacks for me.

>

> Unfortunately, I don't have " mild " attacks. ........

> keep me from being intubated. I used to wake every hour or 2

> in the middle of the night gasping for air. Twice, in full blown

> respiratory arrest. Blue lips, pins and needles in my head and neck

> ...........

> Now, my life is incredibly different. I still need albuterol once in a

> while, but I can't tell you when I last needed my nebulizer in the middle

> of the night. I can walk around stores without panic................

> My kids don't have to worry about me anymore, we get to do things as a

> family. I'm OFF steroids COMPLETELY!!! I'm down to TWO medications for

> asthma other than my Xolair........

>

[Guest guest]

Thanks everyone for the success stories and the positive thoughts! I

think I'm ready I'm still slightly apprehensive.

I've got a flare starting right now and feeling pretty crummy. My peak

flows have been between my red/yellow zone for the past couple days

and I'm trying to avoid an ER trip but I'm not sure how much longer my

Duoneb treatments are gonna control it I have a doc's appointment

on the 11th and I've been hoping to be able to hold out til then but I

don't know if it's going to work. I just feel icky. I've not had a

full fledge attack yet because I've been able to stop them as they

worsen. My throat has been sooooooooooo sore though and I've got an

awful ear ache and the cough is starting again. Of course the post

nasal drip too (that never ends because my sinuses are NEVER healthy).

My Asthma/allergy doc put me on Omnicef on Friday because of a

head/chest cold starting and because my sinuses are still infected

(despite the 20 days of Flagyl/Levaquin/Ceclor).

Can they start the Xolair if you're sick or in the middle of a flare?

Just curious because I knew with the allergy shots they could not do

my shot if i even had a runny nose or anything.

[Guest guest]

--- In , jane mosher <janeannmosher@...>

wrote:

>

> How do I find a good xolair doctor in DFW? I don't feel comfortable

about giving myself my own injections after receiving just a few. I

want a doctor to monitor my progress like all of you seem to have.

Any suggestions? My doctor gives you a certain number of xolair

injections and then you are on your own. Also have not been tested

for hamster. Jane ANN

Jane Ann,

And, I was wishing my doctor would LET me give them to myself.

The medical group he is in was NOT In my network for a while and it

cost me a killing for him to administer the shots.

I gave myself regular allergy shots for over 20 years with NO problems.

Doug

[Guest guest]

On self injection, I live over 25 miles from my doctor so I wanted to do it

to save all that driving in heavy city traffic. I went for the first 5 shots

in the office. For third injection, they went through the prep and injection

process with me. Fourth and fifth visits, I prepped and injected with

them observing.

Each time I had to wait 60 minutes afterwards to ensure I was not going to

react. The hardest part of it is holding steady while pressing the injection

in for a minute or longer due to the thick viscosity of the med. It would be

so much nicer if it could be done quickly but I'm not complaining.

I passed and they allow me to inject at home. They indicated that some

people are just not candidates for it (badly shaking hands, etc.). I have

some medical background in that I had a diabetic cat and three cats that

were in renal failure. I did daily blood sugar tests and insulin injections

for 3 years and also did subcutaneous (under the skin into the fat) saline

injections for the renal failures. So I'm not that squeamish but I wondered

about doing myself. It really is nothing. Usually.

However, I had a bad time a few months back when my brain over thought

the process and just did not want to " let my hand " do the injection. I sat

for hours trying to pierce the skin which DOES NOT HURT - couldn't figure

out why I was not able to do it but I just couldn't. Finally I gave up,

refrigerated it and did it the next morning. I have no idea why I got into

that little snit with myself but it's just gone now, no further remnants of

hesitancy - the psyche is a mysterious thing, I guess.

On insurance requirements: My first insurance company would not approve

shipping to me, only to the Drs' office. So my Dr arranged it so I could

come down and pickup about a 3 month supply at a time from them after they

ordered it so that I would be able to do home injections.

After just 6 months, we switched insurance (both are PPO plans) and this

company will ship to patient or Dr so it's no longer an issue.

I love doing my own injections (for the time saved) and just make sure to do

it when my husband is home in case I had a reaction. So far, nothing except

for a 50 cent piece size whitish circle at the site for a little while just

after injection. I suspect it's because I have very fair sensitive skin,

very transparent actually, so I am seeing the gel medication still sitting

there waiting to be slowly distributed through the system by way of the

small capillary blood system in subcutaneous tissue. Once in a great while,

a little bitty bruise if I jiggle the needle a bit. But nothing of an

allergic nature at all.

If you want to do home injections, I would encourage you to talk to your Dr

at length about it and don't give up if they don't agree right away. I think

most Drs prefer patients to be involved with their treatment and you can't

get much more involved than doing your own injections. If you feel strongly

you can do it and your Dr refuses, push for it. Some Drs are a little hung

up on control. But it's your body, your disease and your choice of how to

treat ultimately. Sometimes a reminder might be needed. Besides if your

insurance company will ship to your home, you might point out that certainly

the insurance companies are not in the business of undertaking great risk

for the fun of it and since they approve of your doing your own injections,

what objection does the Dr have?

If you can't do or don't want to do home injections, so what? No big deal -

do what's right for you and go to the Dr's office instead.

But if you do home injections, it DOES NOT mean you can skip doing check

ups. I go every 3 months and was just switched to 6 months after a year and

half of xolair.

I am not a Dr. and do not share this as medical advice as it's just my

experience and opinion. I hope it helps someone in some way.

Thanks again for the founders of the group giving us a place to talk about

these things.

Leena