RE: Re: IgE levels while Xolair are essentially irrelevant

[Guest guest]

I now take my shot once every six weeks. 

 

Just a question:  have you gone without the xolair for any length of time? 

        

From: <cleptisvirgo@...>

Subject: [ ] Re: IgE levels while Xolair are essentially irrelevant

Date: Thursday, February 12, 2009, 10:27 AM

........ Honestly, I would love to come off of Xolair....which might

> surprise some people. It is an amazingly incovenient drug. A.) it

> will become expensive for me at some point in time. I am lucky now

> that it part of my co-pay, but the insurance companies are looking

> for ways not to pay for this drug. B.) I feel like I am anchored to

> my home. I still travel overseas a lot, and on Xolair, it is

> virtually impossible to find any doctor that will let you travel

> with it....but, if I want to mountainclimb again, forget it. Can't

> refrigerate the stuff when you are in the Himalaya.

>

While I am thankful for the change Xolair has made in my life, I do find being

tethered to it

is inconvenient. I would love to get on a boat with my family and cruise around

the San

islands for a few months. But I can't get too far from my doctors office.

I know some have self injected and I don't understand why we can't all do that.

You hear

about diabetics having problems from getting their insulin wrong, but no one is

suggesting that they shouldn't be allowed to self inject.

Sometimes just working Xolair appointments around my husbands schedule can be a

huge

problem. I don't drive and can't do public transport, so if he's my only ride.

Normally this

works fine, but he's had a lot of traveling lately and it's been tough.

[Guest guest]

Sorry...I hit a wrong button and it sent my message before I was through

 

My doctor changed my xolair to once every six weeks (from once every four

weeks) 

 

Have you gone without xolair for any length of time?  Have you noticed that

xolair helps you considerably?

 

Has your doctor mentioned reducing your dosage to maybe once every three weeks? 

Or maybe keeping the same dosage but once every three to four weeks?  Just

curious.

 

It is hard when one has to depend on someone else for transportation. 

 

I have noticed that I am having reactions to allergens that I did not have for

three years, but now have again and I am wondering if it is because there is a

longer wait time now between shots.

 

These are just some questions and observations.  I know it's hard not to be able

to do some of the things you really enjoy, but I probably wouldn't be able to

enjoy them anyway if I was having asthma symptoms.  The hospital would be no

fun!  We have only traveled more than two weeks once in our married life.  Most

of our trips are short or 10-12 days at the most, so I am fortunate in being

able to travel in between shots.  I did go an extra week one time in between

shots and I did notice a decline in the ease of breathing that time.

 

 

Have a great day......

 

 

 

Adah

From: <cleptisvirgo@...>

Subject: [ ] Re: IgE levels while Xolair are essentially irrelevant

Date: Thursday, February 12, 2009, 10:27 AM

........ Honestly, I would love to come off of Xolair....which might

> surprise some people. It is an amazingly incovenient drug. A.) it

> will become expensive for me at some point in time. I am lucky now

> that it part of my co-pay, but the insurance companies are looking

> for ways not to pay for this drug. B.) I feel like I am anchored to

> my home. I still travel overseas a lot, and on Xolair, it is

> virtually impossible to find any doctor that will let you travel

> with it....but, if I want to mountainclimb again, forget it. Can't

> refrigerate the stuff when you are in the Himalaya.

>

While I am thankful for the change Xolair has made in my life, I do find being

tethered to it

is inconvenient. I would love to get on a boat with my family and cruise around

the San

islands for a few months. But I can't get too far from my doctors office.

I know some have self injected and I don't understand why we can't all do that.

You hear

about diabetics having problems from getting their insulin wrong, but no one is

suggesting that they shouldn't be allowed to self inject.

Sometimes just working Xolair appointments around my husbands schedule can be a

huge

problem. I don't drive and can't do public transport, so if he's my only ride.

Normally this

works fine, but he's had a lot of traveling lately and it's been tough.

[Guest guest]

I first received Xolair as part of a trial in January 2001 in the UK when

the trial came to an end we had to wait 4 months for the next trial to be

approved so I did not receive Xolair for all of this time. I did not notice

any symptons returning until the 3rd month. I recieve the maximum dose every

two weeks.

There were 6 others on the trial at the same time and we all experienced the

same, no problems until month 3.

I hope this helps

_____

From: [mailto: ] On

Behalf Of Adah Voigt

Sent: 12 February 2009 18:08

Subject: Re: [ ] Re: IgE levels while Xolair are essentially

irrelevant

I now take my shot once every six weeks.

Just a question: have you gone without the xolair for any length of time?

From: <cleptisvirgo@ <mailto:cleptisvirgo%40> >

Subject: [ ] Re: IgE levels while Xolair are essentially

irrelevant

@ <mailto: %40>

Date: Thursday, February 12, 2009, 10:27 AM

--- In , " billybaroo1958 " <cajjz109@.. .>

wrote:

........ Honestly, I would love to come off of Xolair....which might

> surprise some people. It is an amazingly incovenient drug. A.) it

> will become expensive for me at some point in time. I am lucky now

> that it part of my co-pay, but the insurance companies are looking

> for ways not to pay for this drug. B.) I feel like I am anchored to

> my home. I still travel overseas a lot, and on Xolair, it is

> virtually impossible to find any doctor that will let you travel

> with it....but, if I want to mountainclimb again, forget it. Can't

> refrigerate the stuff when you are in the Himalaya.

>

While I am thankful for the change Xolair has made in my life, I do find

being tethered to it

is inconvenient. I would love to get on a boat with my family and cruise

around the San

islands for a few months. But I can't get too far from my doctors

office.

I know some have self injected and I don't understand why we can't all do

that. You hear

about diabetics having problems from getting their insulin wrong, but no one

is

suggesting that they shouldn't be allowed to self inject.

Sometimes just working Xolair appointments around my husbands schedule can

be a huge

problem. I don't drive and can't do public transport, so if he's my only

ride. Normally this

works fine, but he's had a lot of traveling lately and it's been tough.

[Guest guest]

Thanks.  That is very helpful.  I receive the minimum dosage every 6 weeks which

is why I asked the question.  But I have also wondered if my doctor was trying

to taper my doses to " wean " me off of xolair--if that's possible.

From: <cleptisvirgo@ <mailto:cleptisvirg o%40. com> >

Subject: [ ] Re: IgE levels while Xolair are essentially

irrelevant

@ <mailto:xolair_ users%40gro ups.com> groups. com

Date: Thursday, February 12, 2009, 10:27 AM

--- In , " billybaroo1958 " <cajjz109@.. .>

wrote:

........ Honestly, I would love to come off of Xolair....which might

> surprise some people. It is an amazingly incovenient drug. A.) it

> will become expensive for me at some point in time. I am lucky now

> that it part of my co-pay, but the insurance companies are looking

> for ways not to pay for this drug. B.) I feel like I am anchored to

> my home. I still travel overseas a lot, and on Xolair, it is

> virtually impossible to find any doctor that will let you travel

> with it....but, if I want to mountainclimb again, forget it. Can't

> refrigerate the stuff when you are in the Himalaya.

>

While I am thankful for the change Xolair has made in my life, I do find

being tethered to it

is inconvenient. I would love to get on a boat with my family and cruise

around the San

islands for a few months. But I can't get too far from my doctors

office.

I know some have self injected and I don't understand why we can't all do

that. You hear

about diabetics having problems from getting their insulin wrong, but no one

is

suggesting that they shouldn't be allowed to self inject.

Sometimes just working Xolair appointments around my husbands schedule can

be a huge

problem. I don't drive and can't do public transport, so if he's my only

ride. Normally this

works fine, but he's had a lot of traveling lately and it's been tough.

[Guest guest]

With my last post, I also meant to add that I have an appointment with the

xolair doctor next month, so I have several questions to ask him, among which is

how long I will be on xolair.  There is no problem with my insurance coverage. 

I just got a letter from them specific to xolair that the coverage would

continue as it did last year, so with medicare and my supplemental, right now I

pay nothing for my shots.

From: <cleptisvirgo>

Subject: [ ] Re: IgE levels while Xolair are essentially irrelevant

Date: Thursday, February 12, 2009, 10:27 AM

........ Honestly, I would love to come off of Xolair....which might

> surprise some people. It is an amazingly incovenient drug. A.) it

> will become expensive for me at some point in time. I am lucky now

> that it part of my co-pay, but the insurance companies are looking

> for ways not to pay for this drug. B.) I feel like I am anchored to

> my home. I still travel overseas a lot, and on Xolair, it is

> virtually impossible to find any doctor that will let you travel

> with it....but, if I want to mountainclimb again, forget it. Can't

> refrigerate the stuff when you are in the Himalaya.

>

While I am thankful for the change Xolair has made in my life, I do find being

tethered to it

is inconvenient. I would love to get on a boat with my family and cruise around

the San

islands for a few months. But I can't get too far from my doctors office.

I know some have self injected and I don't understand why we can't all do that.

You hear

about diabetics having problems from getting their insulin wrong, but no one is

suggesting that they shouldn't be allowed to self inject.

Sometimes just working Xolair appointments around my husbands schedule can be a

huge

problem. I don't drive and can't do public transport, so if he's my only ride.

Normally this

works fine, but he's had a lot of traveling lately and it's been tough.