Re: Symptoms, Xolair possibilities (rambles)

[Guest guest]

Why can't your pulmo office inject it? Sharon

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

From: instdesgn1 <instdesgn1@...>

Sent: Wed, 29 Oct 2008 5:15 pm

Subject: [ ] Symptoms, Xolair possibilities (rambles)

Hi Everyone,

Saw my pulmo yesterday. Of course, my lungs were clear as a

bell she said after I got in there. At home, a few hours earlier as

I was picking up and making the bed I had to use Advair as my chest

felt tight. I thought she said something to the effect that this

could happen - i.e., that it can apparently seem to be an on-and-off

disease. Last week I had a bad episode of " loopiness " - stumbling,

dizziness, extreme nervousness, feeling drugged (I was not drugged)

and fell asleep for 3 hours in the afternoon without apparent cause.

I got the impression it might be part of the disease or perhaps

caused by Allegra or an interaction. I do not do well on

antihistamines. It's not Xolair because I haven't been on it for 4

months ... unless Xolair can have some sort of longer term effect.

I've been diagnosed with asthma, allergic broncho pulmonary

aspergilliosis and copd. I'm *not* on steroids either except for the

inhaled kind from Advair.

Re Xolair ... I went off it 4 months ago when Genentech and my

pulmo claimed it was mandatory that I go to an infusion center. The

place was dirty, the staff incompetent (the pharmacist gave me

incorrect instructions on how to use an epi pen) and the shots really

hurt. It was $$$ and 3 hours in the nasty place. I quit.

The pulmo said she felt it really had done me some good (the

pulmonary function tests showed an improvement and my sinuses

definitely improved) and she was sorry that they came out with the

black box warning. So was I. However, even w/black box warning I

still was a happy home injector for 1-1/2 yrs.

We had a friendly chat - she wants to try to get me reinstated

on Xolair. Of course, I will not have it done in an infusion center

(which she understands) so it would have to be at home. I wonder why

they don't consider having something like phone calls to make sure

the drug is stored properly or even some sort of cam set-up so they

can watch the patient (by remote) inject or ask for a written plan of

who will be with the patient? It seems like more could be done than

just a knee jerk reaction. Somehow, I suspect that if a doctor has

enough power, knows the patient is competent, and knows that the

patient won't do it any other way, that there might be some sort of

willingness to allow home treatment. For now I guess I'm in " wait "

mode.

Happy Halloween!

[Guest guest]

I receive my injections at my allergists office.  Where do you live?  Perhaps

Genentech can find another doctor to administer in a doctor's office.  You can

also go to xolair's website to find other doctor's that administer it.

 

Good luck. 

Webber

303.513.5653

melwebber22@...

 

 

From: instdesgn1 <instdesgn1@...>

Subject: [ ] Symptoms, Xolair possibilities (rambles)

Date: Wednesday, October 29, 2008, 4:15 PM

Hi Everyone,

Saw my pulmo yesterday. Of course, my lungs were clear as a

bell she said after I got in there. At home, a few hours earlier as

I was picking up and making the bed I had to use Advair as my chest

felt tight. I thought she said something to the effect that this

could happen - i.e., that it can apparently seem to be an on-and-off

disease. Last week I had a bad episode of " loopiness " - stumbling,

dizziness, extreme nervousness, feeling drugged (I was not drugged)

and fell asleep for 3 hours in the afternoon without apparent cause.

I got the impression it might be part of the disease or perhaps

caused by Allegra or an interaction. I do not do well on

antihistamines. It's not Xolair because I haven't been on it for 4

months ... unless Xolair can have some sort of longer term effect.

I've been diagnosed with asthma, allergic broncho pulmonary

aspergilliosis and copd. I'm *not* on steroids either except for the

inhaled kind from Advair.

Re Xolair ... I went off it 4 months ago when Genentech and my

pulmo claimed it was mandatory that I go to an infusion center. The

place was dirty, the staff incompetent (the pharmacist gave me

incorrect instructions on how to use an epi pen) and the shots really

hurt. It was $$$ and 3 hours in the nasty place. I quit.

The pulmo said she felt it really had done me some good (the

pulmonary function tests showed an improvement and my sinuses

definitely improved) and she was sorry that they came out with the

black box warning. So was I. However, even w/black box warning I

still was a happy home injector for 1-1/2 yrs.

We had a friendly chat - she wants to try to get me reinstated

on Xolair. Of course, I will not have it done in an infusion center

(which she understands) so it would have to be at home. I wonder why

they don't consider having something like phone calls to make sure

the drug is stored properly or even some sort of cam set-up so they

can watch the patient (by remote) inject or ask for a written plan of

who will be with the patient? It seems like more could be done than

just a knee jerk reaction. Somehow, I suspect that if a doctor has

enough power, knows the patient is competent, and knows that the

patient won't do it any other way, that there might be some sort of

willingness to allow home treatment. For now I guess I'm in " wait "

mode.

Happy Halloween!

[Guest guest]

Ok I know so many people have had positive effects from xolair but, I am one of

the few that reacted to it and badly. If I had been at home I would be dead

right now. Maybe having a spouse home would of helped but still. I had my blood

pressure at of in the drs office 20 minutes after my last attempt. Hence I had

gotten very dizzy previously and the improvement I had justified attempting it

well on zyrtec and one benydryl 2 hours prior. I ended up in the icu for 3 days.

Nobody should take a risk like that at home.

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

From: instdesgn1

Sent: Wednesday, October 29, 2008 5:15 PM

Subject: [ ] Symptoms, Xolair possibilities (rambles)

Hi Everyone,

Saw my pulmo yesterday. Of course, my lungs were clear as a

bell she said after I got in there. At home, a few hours earlier as

I was picking up and making the bed I had to use Advair as my chest

felt tight. I thought she said something to the effect that this

could happen - i.e., that it can apparently seem to be an on-and-off

disease. Last week I had a bad episode of " loopiness " - stumbling,

dizziness, extreme nervousness, feeling drugged (I was not drugged)

and fell asleep for 3 hours in the afternoon without apparent cause.

I got the impression it might be part of the disease or perhaps

caused by Allegra or an interaction. I do not do well on

antihistamines. It's not Xolair because I haven't been on it for 4

months ... unless Xolair can have some sort of longer term effect.

I've been diagnosed with asthma, allergic broncho pulmonary

aspergilliosis and copd. I'm *not* on steroids either except for the

inhaled kind from Advair.

Re Xolair ... I went off it 4 months ago when Genentech and my

pulmo claimed it was mandatory that I go to an infusion center. The

place was dirty, the staff incompetent (the pharmacist gave me

incorrect instructions on how to use an epi pen) and the shots really

hurt. It was $$$ and 3 hours in the nasty place. I quit.

The pulmo said she felt it really had done me some good (the

pulmonary function tests showed an improvement and my sinuses

definitely improved) and she was sorry that they came out with the

black box warning. So was I. However, even w/black box warning I

still was a happy home injector for 1-1/2 yrs.

We had a friendly chat - she wants to try to get me reinstated

on Xolair. Of course, I will not have it done in an infusion center

(which she understands) so it would have to be at home. I wonder why

they don't consider having something like phone calls to make sure

the drug is stored properly or even some sort of cam set-up so they

can watch the patient (by remote) inject or ask for a written plan of

who will be with the patient? It seems like more could be done than

just a knee jerk reaction. Somehow, I suspect that if a doctor has

enough power, knows the patient is competent, and knows that the

patient won't do it any other way, that there might be some sort of

willingness to allow home treatment. For now I guess I'm in " wait "

mode.

Happy Halloween!

[Guest guest]

I don't believe that anyone has had a serious reaction to Xolair

after 1-1/2 years of continuous injections, maximum dose, every 2

weeks. As I recall, every instance of shock ocurred within the first

year. I'm in more danger when I'm driving through the big city than

I am from anaphylactic shock from Xolair at this point. Now then, no

one knows the long term effects of Xolair - what else it might do -

and that's something that concerns me but it's something of a moot

point right now. Same with other drugs I'm on or have been on.

I asked to be injected in the clinic but they refused and no reason

was given. I think Genentech probably has some sort of special

arrangement and probably provide their own nurse. (and she wasn't

very good) It's apparent that there are big time politics involved

in the decision making. There was another doctor in this community

who gives Xolair injections but it would be an unacceptable

situation - several hours and too many dollars and a doctor I don't

think I would like based on his clinical affiliation. This is the SW

US near a major city with a major medical center.

I basically like the pulmologist - think she understands this disease

better than anyone else I've seen. I think she's also a bit on the

spot and had to go along with the Genentech decision. However, I'd

like more effective treatment. I'd also like to know what my IgE is

doing. Right now I'm actually pleasantly surprised and happy that

she would even go to bat for me (in a manner of speaking). Don't

know if it will work but at least it's been brought up.

--- In , " Karin Melvin " <nnmfam@...>

wrote:

>

> Ok I know so many people have had positive effects from xolair but,

I am one of the few that reacted to it and badly. If I had been at

home I would be dead right now. Maybe having a spouse home would of

helped but still. I had my blood pressure at of in the drs office 20

minutes after my last attempt. Hence I had gotten very dizzy

previously and the improvement I had justified attempting it well on

zyrtec and one benydryl 2 hours prior. I ended up in the icu for 3

days.

> Nobody should take a risk like that at home.

> ----- Original Message -----

> From: instdesgn1

>

> Sent: Wednesday, October 29, 2008 5:15 PM

> Subject: [ ] Symptoms, Xolair possibilities (rambles)

>

>

> Hi Everyone,

>

> Saw my pulmo yesterday. Of course, my lungs were clear as a

> bell she said after I got in there. At home, a few hours earlier

as

> I was picking up and making the bed I had to use Advair as my

chest

> felt tight. I thought she said something to the effect that this

> could happen - i.e., that it can apparently seem to be an on-and-

off

> disease. Last week I had a bad episode of " loopiness " -

stumbling,

> dizziness, extreme nervousness, feeling drugged (I was not

drugged)

> and fell asleep for 3 hours in the afternoon without apparent

cause.

> I got the impression it might be part of the disease or perhaps

> caused by Allegra or an interaction. I do not do well on

> antihistamines. It's not Xolair because I haven't been on it for

4

> months ... unless Xolair can have some sort of longer term

effect.

> I've been diagnosed with asthma, allergic broncho pulmonary

> aspergilliosis and copd. I'm *not* on steroids either except for

the

> inhaled kind from Advair.

>

> Re Xolair ... I went off it 4 months ago when Genentech and my

> pulmo claimed it was mandatory that I go to an infusion center.

The

> place was dirty, the staff incompetent (the pharmacist gave me

> incorrect instructions on how to use an epi pen) and the shots

really

> hurt. It was $$$ and 3 hours in the nasty place. I quit.

>

> The pulmo said she felt it really had done me some good (the

> pulmonary function tests showed an improvement and my sinuses

> definitely improved) and she was sorry that they came out with

the

> black box warning. So was I. However, even w/black box warning I

> still was a happy home injector for 1-1/2 yrs.

>

> We had a friendly chat - she wants to try to get me reinstated

> on Xolair. Of course, I will not have it done in an infusion

center

> (which she understands) so it would have to be at home. I wonder

why

> they don't consider having something like phone calls to make

sure

> the drug is stored properly or even some sort of cam set-up so

they

> can watch the patient (by remote) inject or ask for a written

plan of

> who will be with the patient? It seems like more could be done

than

> just a knee jerk reaction. Somehow, I suspect that if a doctor

has

> enough power, knows the patient is competent, and knows that the

> patient won't do it any other way, that there might be some sort

of

> willingness to allow home treatment. For now I guess I'm

in " wait "

> mode.

>

> Happy Halloween!

>

>

>

>

>

>