Re: No more Xolair for me.. I'm hopeless :(

[Guest guest]

That's awful. The only thing I can think of is to encourage you to

realize that every time a new drug is introduced, the manufacturer

gets to work on developing the next generation of the same drug. Not

only that, but lots of companies are doing research in treatments for

allergies and asthma. Developing treatments for chronic illnesses

has a lot of potential for drug companies because the illnesses are

chronic and the folks needing the treatments will need them

repeatedly. Simple supply and demand.

That said, I know how I would feel in your place. I was desperate

when I tried Xolair and I know how I would have felt if it had not

worked for me, regardless of the reason. Hang in there.

Please feel free to continue with the group, finding and giving

support.

Addy

Group co-owner

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

wrote:

>

> After my last shot I had a hives/rash reaction but it was hours

after

> the shot so we weren't 100 % sure that was the cause. So I was told

I

> needed to wait 2 hours yada yada. Well 1 hour and 38 minutes into

my

> wait this morning, I started with hives and itching, also my throat

> became very scratchy/itchy. Followed by the shortness of breath,

> tightness in my chest, and wheezing. I was given 3 shots of

> antihistamine 10 minutes apart, shot of sodium medrol, plus

Prednisone

> by mouth and a benadryl by mouth. Two breathing treatments and what

> was supposed to be a 2 hour wait ended up being 6.5 hours (Got

there

> at 9 and didnt get out of there til 15 til 3). Now I'm just

absolutely

> exhausted, but soo shakey and wired from all the meds pumped into

me.

>

> Now I feel like everything is a lost cause, I'm out of options to

> control my allergies and asthma because the allergist has said

> absolutely no to trying Xolair anymore. For the first time in over

a

> year and a half my spirometry tests and all were over 75% (they

were

> 78 and 79 and one actually hit 80). I don't know whats going to

happen

> now.

>

[Guest guest]

Misty.

Someone posted an article on bronchial thermoplasty a little earlier. Perhaps

that is an option for you. As I understand it, they are in a 2nd clinical trial

(I believe it's closed) and if the results are good it may be nearing FDA

approval. Perhaps this is an option for you.

After my last shot I had a hives/rash reaction but it was hours after

the shot so we weren't 100 % sure that was the cause. So I was told I

needed to wait 2 hours yada yada. Well 1 hour and 38 minutes into my

wait this morning, I started with hives and itching, also my throat

became very scratchy/itchy. Followed by the shortness of breath,

tightness in my chest, and wheezing. I was given 3 shots of

antihistamine 10 minutes apart, shot of sodium medrol, plus Prednisone

by mouth and a benadryl by mouth. Two breathing treatments and what

was supposed to be a 2 hour wait ended up being 6.5 hours (Got there

at 9 and didnt get out of there til 15 til 3). Now I'm just absolutely

exhausted, but soo shakey and wired from all the meds pumped into me.

Now I feel like everything is a lost cause, I'm out of options to

control my allergies and asthma because the allergist has said

absolutely no to trying Xolair anymore. For the first time in over a

year and a half my spirometry tests and all were over 75% (they were

78 and 79 and one actually hit 80). I don't know whats going to happen

now.

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

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[Guest guest]

We are all going to pray for you that's what and at the very least send the very

very best of love and affection and the most positive of thoughts your way.

pyle456 <coachmac@...> wrote:

That's awful. The only thing I can think of is to encourage you to

realize that every time a new drug is introduced, the manufacturer

gets to work on developing the next generation of the same drug. Not

only that, but lots of companies are doing research in treatments for

allergies and asthma. Developing treatments for chronic illnesses

has a lot of potential for drug companies because the illnesses are

chronic and the folks needing the treatments will need them

repeatedly. Simple supply and demand.

That said, I know how I would feel in your place. I was desperate

when I tried Xolair and I know how I would have felt if it had not

worked for me, regardless of the reason. Hang in there.

Please feel free to continue with the group, finding and giving

support.

Addy

Group co-owner

>

> After my last shot I had a hives/rash reaction but it was hours

after

> the shot so we weren't 100 % sure that was the cause. So I was told

I

> needed to wait 2 hours yada yada. Well 1 hour and 38 minutes into

my

> wait this morning, I started with hives and itching, also my throat

> became very scratchy/itchy. Followed by the shortness of breath,

> tightness in my chest, and wheezing. I was given 3 shots of

> antihistamine 10 minutes apart, shot of sodium medrol, plus

Prednisone

> by mouth and a benadryl by mouth. Two breathing treatments and what

> was supposed to be a 2 hour wait ended up being 6.5 hours (Got

there

> at 9 and didnt get out of there til 15 til 3). Now I'm just

absolutely

> exhausted, but soo shakey and wired from all the meds pumped into

me.

>

> Now I feel like everything is a lost cause, I'm out of options to

> control my allergies and asthma because the allergist has said

> absolutely no to trying Xolair anymore. For the first time in over

a

> year and a half my spirometry tests and all were over 75% (they

were

> 78 and 79 and one actually hit 80). I don't know whats going to

happen

> now.

>

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[Guest guest]

I am really, really sorry to hear about your frightening experience.

I realize that " but for grace " go I and I would be so overwhelmed

with frustration and disappointment, just like you feel.

I'm grasping at threads (obviously I'm projecting my own concerns)

but could anything else have contributed to the trigger? i.e., were

you on the same meds that you would normally take? Was this your

first treatment? Were you near any kind of med or scientific lab

that was producing odors? Were you on antibiotics recently? Is

there anything unusual in the air, or on the ground in your

geographic area? Had you been doing anything outside like

gardening? For me, even sorting the (dirty) laundry will trigger a

major asthma attack - same for my hubby. Did you get a chance to

watch the nurse mix the xolair? I've read on this message board that

it has to be done very gently (no vigorous shaking) to avoid breaking

the protein.

Of course you can't keep going through that kind of follow-up

treatment with the steroids and other meds they had to give you.

I've read that the likelihood of shock goes up with repeat injections

although it's STILL EXTREMELY RARE. Has anyone from Xolair

(Genentech) contacted you to talk about what happened? I would

imagine they collect that sort of data. Maybe one of the moderators

of the board could shed more light on that.

I really hope that there was just some unfortunate chain of events

that triggered this. As someone else on the board pointed out,

though, there ARE new treatments in the works - I read about one of

them although I don't remember where right now. Also, perhaps there

are other things going on in your body and another doc might be in

order to run more sophisticated tests.

All the best to you.

[Guest guest]

Shrug nothing out of the ordinary for me. I hadn't eaten anything yet

because we were going to eat a brunch when I got out of the

allergists office, so it couldn't have been a food allergy. Have been

on antibiotics since I started my shots, hadn't taken them yet though

because they have to be taken with food. I literally woke up, got

cleaned up and went to the office 30 minutes away, got my shots (was

my fourth shot, had a possible mild reaction with hives after my

third but it was hours later sooo we were unsure that was the reason)

then this one I was waiting out my 2 hours and reacted. I don't see

them allowing me to try again because I have had full anaphylaxis in

the past (most recent was to my allergy shots in November of 06).

I didn't see them mix it but the nurse that mixed it is excellent and

in charge of the office as far as shots and stuff soo I don't think

it was mixed improperly.

Noone has contacted me yet but it just happened yesterday so I'm

assuming my doctors office will report it to them.

I really hope they get something soon that will help me I can't

repeat last year. It was just awful as far as the attacks and all and

it caused me to lose my job.

I'm just soo frustrated with it, I am diabetic (which was brought on

much earlier most likely because of constant steroid use) I wanted

this to work so bad because we wanted to think more seriously about

starting a family but I guess that won't be happening any time this

year. Not to mention I worked so hard to get my blood sugars under

control and finally got them back into good range (a1c of 6.5%

recently compared to before 7.89 with constant steroid use which

isn't horrible but it's not good at all)

Oh well. I guess. The poor nurse at the doctors office looked like

she was gonna cry because she knows how hard the past year and a half

has been and we had high hopes that this would work.

I'm just still very bummed.