Re: starting xolair injections

[Guest guest]

Hi,

I knew about the heart warning, but I have never heard of hyper IgE bounce back

effect. My understanding is that within a year your IgE returns to previous

treatment levels. Now, I think if you are also doing immunotherapy

desensitization you could potentially come off Xolair and have less IgE. If you

read the studies, they show that there is no bounce back effect. Just a gradual

return to your own previous levels. Also, you will do better when you are off

Xolair if you avoid allergens as much as you can (ie. No pets).

S

Sent from my BlackBerry® smartphone

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

From: " scubagirl233 " <scubagirl233@...>

Sender:

Date: Sat, 05 Feb 2011 18:43:20

< >

Reply-

Subject: [ ] starting xolair injections

My 7 year old is to begin xolair injections Thursday. What kind of side effects

should she expect? I read the possible side effects on the web site. However I

am concerned more about the FDA investigation on possible link to heart

problems, and pulmonary embolisms. Also I have heard that once you stop taking

the xolair your IgE come back extremely elevated. After reading the FDA

investigation Im a little worried about starting the injections. I would

appreciate any comments, as this is a difficult decision to make.

[Guest guest]

>

> My 7 year old is to begin xolair injections Thursday. What kind of side

effects should she expect? I read the possible side effects on the web site.

However I am concerned more about the FDA investigation on possible link to

heart problems, and pulmonary embolisms. Also I have heard that once you stop

taking the xolair your IgE come back extremely elevated. After reading the FDA

investigation Im a little worried about starting the injections. I would

appreciate any comments, as this is a difficult decision to make.

>

My cardiologist had never heard of this information however, he did say that

years of prednisone had really caused damage to all parts of my body.

He is glad I am on xolair and off pred and steroids because 40 mg of pred a day

for so many years had really caused bad side effects.

It gives me shivers to even think of a future of side effects for a 7 year old

child taking steroids for the rest of his/her life.

Ask your doctor what he/she says about the possible heart problems and get an

appointment with a cardiologist too and get his/her take on this, then, do a

risk/benefit analysis.

I am 56 years old and have been on xolair for 7.5 years with NO side effects

whatsoever and most people are just like me.

Bottom line hers is that we KNOW steroids cause bad side effects but there are

only a few instances of them with xolair.

Hope this helps,

Doug

Group founder

[Guest guest]

Thanks for the feed back. I found the info on the FDA web site. As for

prednisone side effects, we are already experiencing them. Weight gain, stunted

growth and severe pain in her bones and joints, suppressed adrenal glands,

steroid dependant. However 9 months ago I decided to hold off on the steroids

and see if she could manage during a flair. I only give it when every other

option is exhausted. It has helped but this winter she has had two 7day rounds

and it shows. Also she started allery shots in the fall but has had to stop due

to asthma flair and other illness. As for her everyday medication my kids a

walking pharmacy.

> >

> > My 7 year old is to begin xolair injections Thursday. What kind of side

effects should she expect? I read the possible side effects on the web site.

However I am concerned more about the FDA investigation on possible link to

heart problems, and pulmonary embolisms. Also I have heard that once you stop

taking the xolair your IgE come back extremely elevated. After reading the FDA

investigation Im a little worried about starting the injections. I would

appreciate any comments, as this is a difficult decision to make.

> >

>

>

> My cardiologist had never heard of this information however, he did say that

years of prednisone had really caused damage to all parts of my body.

>

> He is glad I am on xolair and off pred and steroids because 40 mg of pred a

day for so many years had really caused bad side effects.

>

> It gives me shivers to even think of a future of side effects for a 7 year old

child taking steroids for the rest of his/her life.

>

> Ask your doctor what he/she says about the possible heart problems and get an

appointment with a cardiologist too and get his/her take on this, then, do a

risk/benefit analysis.

>

> I am 56 years old and have been on xolair for 7.5 years with NO side effects

whatsoever and most people are just like me.

>

> Bottom line hers is that we KNOW steroids cause bad side effects but there are

only a few instances of them with xolair.

>

>

> Hope this helps,

>

> Doug

> Group founder

>

[Guest guest]

Thanks I will check into the immunotherapy desensitization, she is taking

allergy shots but they have not been regular. Winter is the wrong time of year

for her. We have tried everything to avoid allergens, except a plastic bubble.

No pets,no fragrances, if its written to avoid for asthmatics we avoid.

>

> Hi,

> I knew about the heart warning, but I have never heard of hyper IgE bounce

back effect. My understanding is that within a year your IgE returns to previous

treatment levels. Now, I think if you are also doing immunotherapy

desensitization you could potentially come off Xolair and have less IgE. If you

read the studies, they show that there is no bounce back effect. Just a gradual

return to your own previous levels. Also, you will do better when you are off

Xolair if you avoid allergens as much as you can (ie. No pets).

> S

> Sent from my BlackBerry® smartphone

>

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

> From: " scubagirl233 " <scubagirl233@...>

> Sender:

> Date: Sat, 05 Feb 2011 18:43:20

> < >

> Reply-

> Subject: [ ] starting xolair injections

>

> My 7 year old is to begin xolair injections Thursday. What kind of side

effects should she expect? I read the possible side effects on the web site.

However I am concerned more about the FDA investigation on possible link to

heart problems, and pulmonary embolisms. Also I have heard that once you stop

taking the xolair your IgE come back extremely elevated. After reading the FDA

investigation Im a little worried about starting the injections. I would

appreciate any comments, as this is a difficult decision to make.

>

>

>

>

>

[Guest guest]

I'm starting Xolair next week as well.  This is one of my HUGE concerns.  I

just had a bilaterial pulmonary embolism last september so I know how very scary

that is ON TOP of this disease. I'm still on coumadin (blood thinners)

because of it!   I'm very scared as well about the FDA investigation as the

results won't be out until 2012 for them to publish.   However, I've lived on

steroids for a very long time and the long term side effects and diseases it's

caused me is worth giving xolair a try just to be able to wean off the

steroids.  I'm scared to try it but I'll eventually die if I don't get off the

steroids.

 

To be able to even try Xolair makes us amongst a very rare group.  Most can't

get it approved for it's cost. 

 

I wish you the best... your child the best.. and mostly I wish for her dreaded

disease to go away!!!

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

From: scubagirl233 & lt;scubagirl233@... & gt;

Sent: Sat, Feb 5, 2011 2:31 pm

Subject: [ ] starting xolair injections

  My 7 year old is to begin xolair injections Thursday. What kind of side

effects should she expect? I read the possible side effects on the web site.

However I am concerned more about the FDA investigation on possible link to

heart problems, and pulmonary embolisms. Also I have heard that once you stop

taking the xolair your IgE come back extremely elevated. After reading the FDA

investigation Im a little worried about starting the injections. I would

appreciate any comments, as this is a difficult decision to make.

[Guest guest]

You poor mommy. I understand all too well. You have to decide what is right for

your munchkin. I have two of my own and one has asthma, the other chronic hives.

But I will say for my body Xolair was the right choice. If my child was on

steroids a lot, I would give them Xolair. No doubt for me there. It gave me my

life and sanity back. I pray every night for a special blessing for all the

people who had a hand in making it available to people who suffer. I was going

to say too that you could start her on a lower dose and see how she does. I

didn't need a lot of it and got relief right away.

All the best mama,

Sheila

Sent from my BlackBerry® smartphone

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

From: " scubagirl233 " <scubagirl233@...>

Sender:

Date: Sun, 06 Feb 2011 03:04:55

< >

Reply-

Subject: [ ] Re: starting xolair injections

Thanks I will check into the immunotherapy desensitization, she is taking

allergy shots but they have not been regular. Winter is the wrong time of year

for her. We have tried everything to avoid allergens, except a plastic bubble.

No pets,no fragrances, if its written to avoid for asthmatics we avoid.

>

> Hi,

> I knew about the heart warning, but I have never heard of hyper IgE bounce

back effect. My understanding is that within a year your IgE returns to previous

treatment levels. Now, I think if you are also doing immunotherapy

desensitization you could potentially come off Xolair and have less IgE. If you

read the studies, they show that there is no bounce back effect. Just a gradual

return to your own previous levels. Also, you will do better when you are off

Xolair if you avoid allergens as much as you can (ie. No pets).

> S

> Sent from my BlackBerry® smartphone

>

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

> From: " scubagirl233 " <scubagirl233@...>

> Sender:

> Date: Sat, 05 Feb 2011 18:43:20

> < >

> Reply-

> Subject: [ ] starting xolair injections

>

> My 7 year old is to begin xolair injections Thursday. What kind of side

effects should she expect? I read the possible side effects on the web site.

However I am concerned more about the FDA investigation on possible link to

heart problems, and pulmonary embolisms. Also I have heard that once you stop

taking the xolair your IgE come back extremely elevated. After reading the FDA

investigation Im a little worried about starting the injections. I would

appreciate any comments, as this is a difficult decision to make.

>

>

>

>

>

[Guest guest]

I was diagnosed with allergic asthma at age 3. That was 40 years ago. In 2003, I

began taking Xolair. I have very high IgE scores, and I take the maximum dose.

Xolair has improved my quality of life more than I can say. I used to take

prednisone 9-10 times a year. Now I need it about twice a year, and in much

smaller quantities for shorter periods of time, which is a real blessing since

prednisone and repeated asthma attacks have really damaged my lungs, heart,

bones, etc. Both my GP and my pulmo want me to take as little prednisone as

possible, and consider the risk profile for prednisone a lot more dangerous than

Xolair's, at least for me anyway.

I have not had any problems with side effects except sometimes I am really tired

the day after the shots.

Taking any new medicine can be a tough decision, let alone one like Xolair. Each

of us has has to make our own risk-benefit analysis to determine if Xolair is

right for us. It's been very right for me.

Best of luck to those of you who are making this decision. We encourage you to

post questions and concerns here.

Addy

Group Co-owner

>

> I'm starting Xolair next week as well.  This is one of my HUGE concerns.  I

just had a bilaterial pulmonary embolism last september so I know how very scary

that is ON TOP of this disease. I'm still on coumadin (blood thinners)

because of it!   I'm very scared as well about the FDA investigation as the

results won't be out until 2012 for them to publish.   However, I've lived on

steroids for a very long time and the long term side effects and diseases it's

caused me is worth giving xolair a try just to be able to wean off the

steroids.  I'm scared to try it but I'll eventually die if I don't get off the

steroids.

>  

> To be able to even try Xolair makes us amongst a very rare group.  Most can't

get it approved for it's cost. 

>  

> I wish you the best... your child the best.. and mostly I wish for her dreaded

disease to go away!!!

>

>

>

>

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

> From: scubagirl233 scubagirl233@...

>

> Sent: Sat, Feb 5, 2011 2:31 pm

> Subject: [ ] starting xolair injections

>

>   My 7 year old is to begin xolair injections Thursday. What kind of side

effects should she expect? I read the possible side effects on the web site.

However I am concerned more about the FDA investigation on possible link to

heart problems, and pulmonary embolisms. Also I have heard that once you stop

taking the xolair your IgE come back extremely elevated. After reading the FDA

investigation Im a little worried about starting the injections. I would

appreciate any comments, as this is a difficult decision to make.

>

>

>

>

>

>

>

>