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Thanks. Adah. I actually did bring this up with the nurses(been waiting for

appt with dr). The one that gives the shot with no pain is a floater

between offices and doesnt know when she will be there..I ask her why it

doesnt hurt when she gives but does with the other nurses and she just

defended them saying they are all doing it the way they were taught....I did

however notice that the one nurse I complained about doesnt give the shots

anymore...when she gave my dd a shot it hurt the worse and my daughter said

something to her ..this nurse said something to my dd that it hurt her

thumb more giving these shots all day..idiot...

it may not matter much more anyway...my daughter has asthma but was put on

this more off label for her severe skin allergies..it will be 6 months on

11/4 and it hasnt helped at all and her skin is actually worse(not ness.

becasue of the xolair though)..anyway her derm is putting her back on

cyclosporin for her skin and although her drs. said she can be on both I

dont know if I want her on two very potent medicines..I am waiting for a

call back from her allergist(xolair guy) as I type to see what he suggest.

Currently she is on prednisone and has been too many times for her skin so

we need to do something to get her off of this.

ok thanks for your suggestions...I will keep this in mind not only for

xolair shots but for other medical necc. as well...I have learned to speak

up over the years.

take care. jean

On Mon, Oct 12, 2009 at 9:07 AM, Adah Voigt <asthmatic50@...> wrote:

>

>

> I guess I was fortunate. My xolair doctor (at the six months appointment

> after starting xolair) asked me about the shots and actually asked for an

> evaluation of how I was treated by his staff. I told him the two nurses who

> gave the shots correctly and then I told him about the one nurse who gave it

> to me too fast, it hurt, and I had a huge bruise for a week. Guess

> what...he assigned one of the nurses to me that gave me the shots

> correctly. Now, if she can't, she makes sure that one of the others who

> gives it correctly gives me the shot. I have had no pain and no problems

> since.

>

> However, you are your child's advocate unless she is old enough to speak

> out for herself. The next time she has a doctor's appointment I would

> simply say, " Why is it that when Nurse #1 gives the shot, my daughter has no

> pain, but when any of the other nurses give her the shot she has intense

> pain. " Maybe he will respond in a positive way and your daughter can get

> her shots only by the one nurse, or maybe it will be a clue to him that his

> other nurses need to be retrained on giving the xolair shots. I am just

> throwing out some ideas for you.

>

> By the way I am a 71 year old lady who learned a long time ago to be my own

> advocate, but in as tactful, non-confrontational way as possible. I am not

> afraid to ask questions that let my providers know I am informed.

>

> Best wishes....the shots (other than the initial stick) shouldn't

> hurt......

>

> Adah

>

>

>

> >

> >

> > Good day all. I've had to post out of order because I receive the

> following

> > message when I try to Reply to any post.

> >

> > Cannot retrieve message #### for

> >

> > Anyway, Lucy experiences pain with the shots (two). She does not

> > self-administer. She receives the shots at the doctor's office. I realize

> > everyone has different pain thresholds but there may be something to the

> > comment that the injections are not being administered appropriately i.e.

> > not slowly enough.

> >

> > Lucy's not on hypertension drugs so we'll continue to seek an answer to

> the

> > hair issue. I will share whatever we find out.

> >

> >

> >

>

>

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I do hope there is something your daughter can be given to give her relief.  As

a matter of record, I have had to take an antibiotic twice since being on

xolair....one for a gum infection (that was an awful antibiotic and one

especially for that type of infection...very strong, too.), and then I had a bad

respiratory infection last January (but no asthma!)  Too many things happened at

once and my immune system was low. 

 

Good luck and I hope you get some good news from the doctor.

 

Adah

>

> >

> >

> > Good day all. I've had to post out of order because I receive the

> following

> > message when I try to Reply to any post.

> >

> > Cannot retrieve message #### for

> >

> > Anyway, Lucy experiences pain with the shots (two). She does not

> > self-administer. She receives the shots at the doctor's office. I realize

> > everyone has different pain thresholds but there may be something to the

> > comment that the injections are not being administered appropriately i.e.

> > not slowly enough.

> >

> > Lucy's not on hypertension drugs so we'll continue to seek an answer to

> the

> > hair issue. I will share whatever we find out.

> >

> >

> >

>

>

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Hi:

I've been on Xolair for six or seven years now.  I'm on Medicare, and am very

concerned about what cuts Washington will do to Medicare and possibly take

Xolair injections, is there anyone else concerned about this?

Kathy

________________________________

From: pyle456 <jamcculloch2@...>

Sent: Sat, October 10, 2009 7:12:11 AM

Subject: [ ] Re: Introduction

 

Welcome!

I'm sorry to hear that your wife is experiencing such difficulty.

We have had a VERY small number of folks report experiencing

pain with Xolair shots. Like Adah, I wonder if the shots are

being administered slowly enough.

Do try to rule out other possibilities for the hair loss,

especially since your wife noticed it prior to starting Xolair.

Let us know how she is doing and what you find out.

Addy

Group Co-owner

>

> Greetings to the group. I am not on Xolair but my wife has been taking the

medicine for several months now. We have seen marked improvement in her asthma

and we're very thankful of that. I found your group while searching on hair

loss. While she was losing some hair before, the hair loss seems to have

intensified since she's been on Xolair.

>

> I did see that the group last discussed the subject in March and I read Addy

and Pat's responses. I appreciate the information. I shared the posts with my

wife and we'll follow up on the endocrinology angle.

>

> She's endured the painful injections and the waiting to see if it'd work for

her. Now that she's got some aspect of her life back, losing her hair has taken

some of the shine off the therapy. Hopefully we can find another reason for the

hair loss and deal with that seperately.

>

> Thanks again for the information. Good health to all.

>

> Andy

>

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Kathy-

With the economy as stinky as it is, cuts will be made no matter who votes for

what. I think there are a lot of sick people who will have to be actively

communicating with their elected representatives.

I'm keeping my fingers crossed too.

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

From: kathy eisen <kathyh1942@...>

Sent: Thu, Oct 15, 2009 1:55 pm

Subject: Re: [ ] Re: Introduction

Hi:

I've been on Xolair for six or seven years now. I'm on Medicare, and am very

concerned about what cuts Washington will do to Medicare and possibly take

Xolair injections, is there anyone else concerned about this?

Kathy

________________________________

From: pyle456 <jamcculloch2@...>

Sent: Sat, October 10, 2009 7:12:11 AM

Subject: [ ] Re: Introduction

Welcome!

I'm sorry to hear that your wife is experiencing such difficulty.

We have had a VERY small number of folks report experiencing

pain with Xolair shots. Like Adah, I wonder if the shots are

being administered slowly enough.

Do try to rule out other possibilities for the hair loss,

especially since your wife noticed it prior to starting Xolair.

Let us know how she is doing and what you find out.

Addy

Group Co-owner

>

> Greetings to the group. I am not on Xolair but my wife has been taking the

medicine for several months now. We have seen marked improvement in her asthma

and we're very thankful of that. I found your group while searching on hair

loss. While she was losing some hair before, the hair loss seems to have

intensified since she's been on Xolair.

>

> I did see that the group last discussed the subject in March and I read Addy

and Pat's responses. I appreciate the information. I shared the posts with my

wife and we'll follow up on the endocrinology angle.

>

> She's endured the painful injections and the waiting to see if it'd work for

her. Now that she's got some aspect of her life back, losing her hair has taken

some of the shine off the therapy. Hopefully we can find another reason for the

hair loss and deal with that seperately.

>

> Thanks again for the information. Good health to all.

>

> Andy

>

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I am on medicare and am in my 4th year of xolair.  I am concerned.  I do have

supplemental insurance, so I have not had to pay anything for xolair.  I am very

concerned about the possible cuts in Medicare, even though most of my meds are

paid for by my supplemental insurance.  I don't have the Medicare Prescrip.

insurance.

 

Adah

From: kathy eisen <kathyh1942@...>

Subject: Re: [ ] Re: Introduction

Date: Thursday, October 15, 2009, 3:55 PM

 

Hi:

I've been on Xolair for six or seven years now.  I'm on Medicare, and am very

concerned about what cuts Washington will do to Medicare and possibly take

Xolair injections, is there anyone else concerned about this?

Kathy

____________ _________ _________ __

From: pyle456 <jamcculloch2@ ec.rr.com>

Sent: Sat, October 10, 2009 7:12:11 AM

Subject: [ ] Re: Introduction

 

Welcome!

I'm sorry to hear that your wife is experiencing such difficulty.

We have had a VERY small number of folks report experiencing

pain with Xolair shots. Like Adah, I wonder if the shots are

being administered slowly enough.

Do try to rule out other possibilities for the hair loss,

especially since your wife noticed it prior to starting Xolair.

Let us know how she is doing and what you find out.

Addy

Group Co-owner

>

> Greetings to the group. I am not on Xolair but my wife has been taking the

medicine for several months now. We have seen marked improvement in her asthma

and we're very thankful of that. I found your group while searching on hair

loss. While she was losing some hair before, the hair loss seems to have

intensified since she's been on Xolair.

>

> I did see that the group last discussed the subject in March and I read Addy

and Pat's responses. I appreciate the information. I shared the posts with my

wife and we'll follow up on the endocrinology angle.

>

> She's endured the painful injections and the waiting to see if it'd work for

her. Now that she's got some aspect of her life back, losing her hair has taken

some of the shine off the therapy. Hopefully we can find another reason for the

hair loss and deal with that seperately.

>

> Thanks again for the information. Good health to all.

>

> Andy

>

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I think that any med is on the line everyday and also every service now.

I am being evaluated at National Jewish in Denver right now and I spoke

with my pulmonologist about xolair and he thinks it will be okay because

patients can't just stop it.

________________________________

From: kathy eisen <kathyh1942@...>

Sent: Thu, October 15, 2009 3:55:48 PM

Subject: Re: [ ] Re: Introduction

 

Hi:

I've been on Xolair for six or seven years now.  I'm on Medicare, and am very

concerned about what cuts Washington will do to Medicare and possibly take

Xolair injections, is there anyone else concerned about this?

Kathy

____________ _________ _________ __

From: pyle456 <jamcculloch2@ ec.rr.com>

Sent: Sat, October 10, 2009 7:12:11 AM

Subject: [ ] Re: Introduction

 

Welcome!

I'm sorry to hear that your wife is experiencing such difficulty.

We have had a VERY small number of folks report experiencing

pain with Xolair shots. Like Adah, I wonder if the shots are

being administered slowly enough.

Do try to rule out other possibilities for the hair loss,

especially since your wife noticed it prior to starting Xolair.

Let us know how she is doing and what you find out.

Addy

Group Co-owner

>

> Greetings to the group. I am not on Xolair but my wife has been taking the

medicine for several months now. We have seen marked improvement in her asthma

and we're very thankful of that. I found your group while searching on hair

loss. While she was losing some hair before, the hair loss seems to have

intensified since she's been on Xolair.

>

> I did see that the group last discussed the subject in March and I read Addy

and Pat's responses. I appreciate the information. I shared the posts with my

wife and we'll follow up on the endocrinology angle.

>

> She's endured the painful injections and the waiting to see if it'd work for

her. Now that she's got some aspect of her life back, losing her hair has taken

some of the shine off the therapy. Hopefully we can find another reason for the

hair loss and deal with that seperately.

>

> Thanks again for the information. Good health to all.

>

> Andy

>

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Hi :

You're right!

I've just sent several e-mails to my elected officials.

Yes the ecomony stinks, but I think our elected officials are making it

stinkier.

Kathy

________________________________

From: " pianocat88@... " <pianocat88@...>

Sent: Thu, October 15, 2009 5:56:38 PM

Subject: Re: [ ] Re: Introduction

 

Kathy-

With the economy as stinky as it is, cuts will be made no matter who votes for

what. I think there are a lot of sick people who will have to be actively

communicating with their elected representatives.

I'm keeping my fingers crossed too.

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

From: kathy eisen <kathyh1942 (DOT) com>

Sent: Thu, Oct 15, 2009 1:55 pm

Subject: Re: [ ] Re: Introduction

Hi:

I've been on Xolair for six or seven years now. I'm on Medicare, and am very

concerned about what cuts Washington will do to Medicare and possibly take

Xolair injections, is there anyone else concerned about this?

Kathy

____________ _________ _________ __

From: pyle456 <jamcculloch2@ ec.rr.com>

Sent: Sat, October 10, 2009 7:12:11 AM

Subject: [ ] Re: Introduction

Welcome!

I'm sorry to hear that your wife is experiencing such difficulty.

We have had a VERY small number of folks report experiencing

pain with Xolair shots. Like Adah, I wonder if the shots are

being administered slowly enough.

Do try to rule out other possibilities for the hair loss,

especially since your wife noticed it prior to starting Xolair.

Let us know how she is doing and what you find out.

Addy

Group Co-owner

>

> Greetings to the group. I am not on Xolair but my wife has been taking the

medicine for several months now. We have seen marked improvement in her asthma

and we're very thankful of that. I found your group while searching on hair

loss. While she was losing some hair before, the hair loss seems to have

intensified since she's been on Xolair.

>

> I did see that the group last discussed the subject in March and I read Addy

and Pat's responses. I appreciate the information. I shared the posts with my

wife and we'll follow up on the endocrinology angle.

>

> She's endured the painful injections and the waiting to see if it'd work for

her. Now that she's got some aspect of her life back, losing her hair has taken

some of the shine off the therapy. Hopefully we can find another reason for the

hair loss and deal with that seperately.

>

> Thanks again for the information. Good health to all.

>

> Andy

>

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  • 6 months later...
Guest guest

I'm new to this group and just wanted to say a quick hello and introduce myself.

My name is Stafford, Spottie O'Keefe is my business name so that is why

my email is what it is. Spottie is actually a nickname my husband gave me back

when I was a teenager and O'Keefe was his Irish ancestors' name. My husband and

I are both freethinkers and love to hear what other freethinkers have to say, so

I joined this group. I also wanted to tell you about a highly contagious virus I

recently caught. It's called a smile! I caught it from a wonderful lady at a

local discussion group I go to about the Laws of Attraction. I think it's one of

the most pleasant viruses you will ever catch and I encourage anyone that

catches it to spread it to as many people as they can! Just my little

contribution for the day!

Love and peace,

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