Re: How Black Box warning affects me

[Guest guest]

I know the black box has changed the routine for many xolair users. Since I

have only had nine shots, and never had an anaphylactic reaction to anything

(though I understand there is always a first time for anything!), the only

change made for me is that I now carry an Epi-pen with me all the time, I must

have it with me when I get the shot (once a month) and I have to wait in the

office for 30 minutes instead of being able to leave after 10 minutes.. So I

take a book! I am fortunate, though as I am retired, and even though I

wouldn't like it, I could wait the 2 hours if I had to. Other than that minor

change for me, life is still rocking along and I know that xolair has cut way

down on my reactions to the pollens in the air this spring, already.

Leena Grace <leenagrace@...> wrote:

Just thought I'd report to the group how this has affected me. I have

been on xolair for about 2 years, self injecting at home for all but

the first 4 shots. I've never had any reaction save for a couple of

tiny bruises due to my wiggling around during the injection. Oh and I

am VERY fair, so my almost transparent skin does allow one to see the

xolair sitting in a little light colored circle just larger than a

quarter for about an hour after the shot until it begins being

absorbed by the subQ.

My Dr of 12 years is a pulmo and I have for the past several years

almost exclusively seen his nurse practitioner who is just wonderful.

I don't have the type of asthma that sends me to the hospital or

keeps me on pred but I do have pretty bad cough variant asthma.

Xolair has cut down the volume of my coughing by half to 75%. I have

been able cut back on Advair/Qvar to use only when I am flaring

up, have been able to stop Singular and only require a small portion

of the amount of Flonase and Allegra that I've used in the past.

The xolair side benefit has been that I can now eat some foods I am

sensitive to and no longer get the " itching in my ears/sick to my

stomach " effect I have had with melons, some berries, bananas, kiwis,

tomatoes, pears and even carrots and celery. It was like heaven to

get to eat melon again after almost 10 years without fearing I might

get sick.

Anyway, life has been crazy here and right in the middle of this a

couple week's back, I got a call from the xolair nurse at my

Drs' office stating all patients were required to come in for a check

due to the warning. I made my appt for today.

I was ready for my shot (2x month), so I took it with me today,

optimistically thinking I'd let them review my mixing and injection

technique in hopes of reassuring them I'd be OK to keep injecting at

home.

My NP said the practice of about 6 pulmo docs had voted to require

all patients to have shots in office and to wait 2 hours in the

waiting room. Their decision was driven by legal liability. No

surprise. This new requirement would have tripled my cost with 2

office visits a month, so she offered to do it without an office call

for me. Later it was noted that the waiting room is not monitored

strictly. I had several docs to read and sign and got an Rx for 2 epi

pens, 20ml of Benedryl (H1 blocker), one 150 mg Zantac (H2 blocker)

and one 20 mg pred tab. (I knew Benedryl was a histamine blocker but

had no idea Zantac was also a different type of histamine blocker!)

The instructions state in case of anaphylactoid reaction, do the epi

pen and if possible take all 3 meds by mouth and call 911. If things

still seem intense, take the second epi pen 15 min later.

She feels I have an extremely low liklihood of this reaction as I

have had none for all this time and no history of this type of

reaction to other things in the past. She stated that if you are

going to have a reaction, it will usually happen within the first 10

injections. We talked about how it is thought the breakage of the

proteins is what may be causing the reaction and reviewed mixing and

injection technique. I will also be allowed to continue to

reconstitute and inject my xolair in the office. They have a mixer

machine from Genentech so they will mix for me but I feel more

comfortable doing the rest knowing I am gently drizzling the saline

into the xolair, gently drawing it up and very slowly injecting it. I

believe I do the injection slower than they did those first few

times. I trust the staff but I also know it could be easy for support

staff to perhaps go quickly if under stress of waiting patients

rather than going slow. So I feel more comfortable doing as much of

the process as I can so I can be sure it's done per recommended

procedure.

I'm not thrilled about driving 20+ miles each way 2x per month but

it's worth it and I will just plan for some piggyback shopping, lunch

out and

other stops on the way. I'm grateful my doc is so flexible and

willing to work with me. She even suggested I might try to transfer

to an allergist who had a policy of just a 15 min wait and offered to

give me a list of allergists offering that. But I'll stick where I am

and be grateful for the excellent care and caring I get there.

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

Food fight? Enjoy some healthy debate

in the Answers Food & Drink Q & A.

[Guest guest]

Well, I think in the face of everything, your pulmo group has chosen

a moderate course of responsible action rather than a paranoid one.

It sounds like you are in very good hands there!

Addy

Group co-owner

--- In , " Leena Grace " <leenagrace@...>

wrote:

>

> Just thought I'd report to the group how this has affected me. I

have

> been on xolair for about 2 years, self injecting at home for all

but

> the first 4 shots. I've never had any reaction save for a couple of

> tiny bruises due to my wiggling around during the injection. Oh and

I

> am VERY fair, so my almost transparent skin does allow one to see

the

> xolair sitting in a little light colored circle just larger than a

> quarter for about an hour after the shot until it begins being

> absorbed by the subQ.

>

> My Dr of 12 years is a pulmo and I have for the past several years

> almost exclusively seen his nurse practitioner who is just

wonderful.

> I don't have the type of asthma that sends me to the hospital or

> keeps me on pred but I do have pretty bad cough variant asthma.

> Xolair has cut down the volume of my coughing by half to 75%. I

have

> been able cut back on Advair/Qvar to use only when I am flaring

> up, have been able to stop Singular and only require a small

portion

> of the amount of Flonase and Allegra that I've used in the past.

>

> The xolair side benefit has been that I can now eat some foods I am

> sensitive to and no longer get the " itching in my ears/sick to my

> stomach " effect I have had with melons, some berries, bananas,

kiwis,

> tomatoes, pears and even carrots and celery. It was like heaven to

> get to eat melon again after almost 10 years without fearing I

might

> get sick.

>

> Anyway, life has been crazy here and right in the middle of this a

> couple week's back, I got a call from the xolair nurse at my

> Drs' office stating all patients were required to come in for a

check

> due to the warning. I made my appt for today.

>

> I was ready for my shot (2x month), so I took it with me today,

> optimistically thinking I'd let them review my mixing and injection

> technique in hopes of reassuring them I'd be OK to keep injecting

at

> home.

>

> My NP said the practice of about 6 pulmo docs had voted to require

> all patients to have shots in office and to wait 2 hours in the

> waiting room. Their decision was driven by legal liability. No

> surprise. This new requirement would have tripled my cost with 2

> office visits a month, so she offered to do it without an office

call

> for me. Later it was noted that the waiting room is not monitored

> strictly. I had several docs to read and sign and got an Rx for 2

epi

> pens, 20ml of Benedryl (H1 blocker), one 150 mg Zantac (H2 blocker)

> and one 20 mg pred tab. (I knew Benedryl was a histamine blocker

but

> had no idea Zantac was also a different type of histamine blocker!)

> The instructions state in case of anaphylactoid reaction, do the

epi

> pen and if possible take all 3 meds by mouth and call 911. If

things

> still seem intense, take the second epi pen 15 min later.

>

> She feels I have an extremely low liklihood of this reaction as I

> have had none for all this time and no history of this type of

> reaction to other things in the past. She stated that if you are

> going to have a reaction, it will usually happen within the first

10

> injections. We talked about how it is thought the breakage of the

> proteins is what may be causing the reaction and reviewed mixing

and

> injection technique. I will also be allowed to continue to

> reconstitute and inject my xolair in the office. They have a mixer

> machine from Genentech so they will mix for me but I feel more

> comfortable doing the rest knowing I am gently drizzling the saline

> into the xolair, gently drawing it up and very slowly injecting it.

I

> believe I do the injection slower than they did those first few

> times. I trust the staff but I also know it could be easy for

support

> staff to perhaps go quickly if under stress of waiting patients

> rather than going slow. So I feel more comfortable doing as much of

> the process as I can so I can be sure it's done per recommended

> procedure.

>

> I'm not thrilled about driving 20+ miles each way 2x per month but

> it's worth it and I will just plan for some piggyback shopping,

lunch

> out and

> other stops on the way. I'm grateful my doc is so flexible and

> willing to work with me. She even suggested I might try to transfer

> to an allergist who had a policy of just a 15 min wait and offered

to

> give me a list of allergists offering that. But I'll stick where I

am

> and be grateful for the excellent care and caring I get there.

>