Re: Churg/Strauss Syndrome

[Guest guest]

...

#1 -- breathe....

#2 -- it's good to have answers

I have CSS. Was positively diagnosed just a few short weeks ago. I

was on Xolair for 2 months because of a high IGE and adult onset

asthma that popped out of nowhere -- and it was hard to control

without prednisone. We were hoping the Xolair would finally stop my

coughing. It started too...

My asthma god (aka doctor) and I noticed a cycle of whenever I went

off prednisone my asthma got much worse and I would break out in

rashes. We cycled off prednisone and then 3 days later did a blood

count and measured for EOS cells -- they came back high -- too high

for an allergic reaction and we realized we were onto something. (they

will be slightly elevated in normal allergic reactions -- we thought

it was the Xolair so I came off it for a retest after another

prednisone taper 2 weeks later)

CSS has 6 critera and you have to have 4 of them. Consider it to be

like a bingo card with a free space. Neuropathy is one, along with

elevated EOS, adult onset asthma or worsening of asthma is the BIG

sign. Then there is vasculitis -- it need to be found somewhere for

most doctors to be happy with a diagnosis. I was 'lucky' (I think I

mean unlucky) -- they found mine in a skin biopsy and later we found a

little on my brain.... There is also pulmanary infultrates -- but

they move and are hard to 'catch' sometimes.

There are tests, simple blood ones that can be run... the easiest is

to check for EOS cells -- it's usually part of the routine CBC counts

that they do. BUT you MUST be off prednisone for the counts to be

accurate. Xolair does not affect the counts. Also they can run an

ANCA test (this tests for multiple immune system disorders) problem

with it-- is that in Churg Strauss it is negative in 40% of people who

have the illness -- but if it is positive than you have an answer.

These tests are easy to run and you should request them from your

doctor -- just state you want a piece of mind. It is important to

know if you have CSS because then prednisone may become a way of life

for you and you want to stop this illness before it affects any major

organ system (besides you already involved lungs) -- if you catch it

early your chances of sending it into remission with prednisone alone

is great! Otherwise you have to go on some stronger drugs to suppress

your immune system.

There are a few other people on this Xolair group that also have Churg

Strauss -- If I remember right there are 3 of us. Most doctors have

never heard of it before and run to the internet for information (very

funny to watch) I am the first case my asthma god diagnosed. I am

the 3rd for my rheaumatologist and the first for all the rest of my

dr's. Even my pulmanologist was taken back when he realized what I had.

Email me offlist if you have any other questions... I would be happy

to share what I know -- It's scary but it is better to know than

not... It's somehow reassuring that the doctors have checked out

every organ system and we have our baselines.

Also there is a churg strauss group -- but be forwarned that

many people who post there were not diagnosed until some sort of organ

failure/ major even happened so it's gets a little heavy....

karen

[Guest guest]

Since I have been on Xolair I get significant pain in

my arm muscles near the injection sites(both arms, all

the time). Last month I iced my arm after the shot and

have had some relief in that arm.

--- Currier <redsoxkitten@...> wrote:

> Hello Group!

>

> I was wondering if anyone in this group knows much

> about Churg Strauss

> Syndrome.

>

> I have specific reasons for asking...

>

> I've mentioned to the group in the past, that before

> Xolair came into my

> life, I was completely steroid dependant, at 60mg of

> Prednisone a day, and

> even at that dose, I would frequently end up

> admitted to the hospital on IV

> solu-medrol.

>

> Beyond that, for several years, cycling on and off,

> I have had severe

> tingling/numbness in my arms. More often it is my

> left arm, and along with

> the numbness cycles, I will experience bouts of

> extreme muscle pain/aching.

> This isn't constant, but will occur only during the

> cycles of numbness, and

> is excruciating. The only relief I get is to take

> strong muscle relaxers

> and high dose vicodin together. I'm experiencing a

> bout of this now.

>

> Ages ago, before starting Xolair, out of curiosity,

> on the medical websites,

> I typed shortness of breath, numbness, tingling,

> granulomas, and rashes into

> the search bar. Churg Strauss popped up on every

> single one of them.

>

> Now, I'm curious, because I don't know much if

> anything about this illness.

> My granulomas have been limited to my feet and hands

> thus far, to my

> knowledge, I don't have any on my internal organs,

> but honestly, I've never

> asked the doctors to go searching either, not

> knowing that they could be

> related to my lungs.

>

> My dermatologist seemed incredibly shocked that I

> could have granulomas at

> all given the high doses of steroids I had been on

> in the past...

>

> Xolair has been working quite well for me, but I say

> that compared to how I

> was in years past. I will admit that recently

> (since pollen season has

> begun, and with the recent wet weather in the

> northeast has caused molds to

> increase dramatically) I have been incredibly short

> of breath. My oxygen

> level has been very low (for me) and I am constantly

> coughing and wheezing

> again. It has been suggested by my primary care

> that I run a course of

> prednisone, but being stubborn, I wanted to see if I

> could make it though

> without steroids since I worked so long and hard to

> get off of them and to

> lose the weight that went with it. It's been a

> struggle, I'm back to

> nebbing every 4 hours without fail, and am NEVER

> completely clear. I did

> increase my advair.

>

> What I do know of Churg Strauss, is that it causes

> steroid dependancy... I

> don't know too much else about it. I'll admit that

> for the first time in my

> life, I'm afraid to ask my doctor about it. I don't

> want him thinking that

> I'm looking for more problems.

>

> My neurologist has been screening me for Multiple

> Sclerosis for the past

> several years because of the numbness and tingling

> in my arms. My mother

> and her brother both have MS, so I think it was

> natural for him to jump to

> that conclusion, and for my other doctors to do the

> same. Since Churg

> Strauss seems to be so rare, is it possible that

> this is something that

> could have been overlooked, or is it possible that I

> am in fact reaching?

>

> Any opinions and or information you could all give

> me would be greatly

> appreciated. I'm not usually the type to be timid

> and shy around my doctors

> and I'm usually incredibly knowledgeable about my

> illness. I think I'm

> afraid of being shot down when it could be the most

> important time ever.

>

> Thanks in advance

>

>

>

> [Non-text portions of this message have been

> removed]

>

>

[Guest guest]

I am so glad you mentioned the arm muscle soreness. I get my shot in alternate

arms each month and after the third shot I began to have muscle soreness in both

arms! I first noticed the soreness when I tried to raise my arm with it bent at

the elbow (trying to do something) and it hurt really bad. I have had the

soreness each month, but it has eased quite a bit in the last two or three

months. I will get my 10th shot next month.

I thought maybe the soreness was from sleeping on my arms with them above my

head! Or that maybe I was imagining it was from the shots. But it always gets

less, even though it never totally goes away. I had muscle soreness elsewhere

before I ever started the shots and there are so many possible side effects to

the meds I take that I don't know where to attribute aches and pains to the meds

or to the xolair or just to getting old! I do stay very active physically and

have been trying really hard to get back to my exercise program.

Thanks for sharing that you had muscle aches in your arms.

Other than that, I know for sure that my asthma is soooooo much better. I can

go all day without using my albuterol at all, after using the neb once in the

morning. And no pred. for a year and a half, no sinus infection or respiratory

infection requiring antibiotics! So I'll take a few muscle aches!

Adah

maria dunning <dunningml@...> wrote:

Since I have been on Xolair I get significant pain in

my arm muscles near the injection sites(both arms, all

the time). Last month I iced my arm after the shot and

have had some relief in that arm.

--- Currier <redsoxkitten@...> wrote:

> Hello Group!

>

> I was wondering if anyone in this group knows much

> about Churg Strauss

> Syndrome.

>

> I have specific reasons for asking...

>

> I've mentioned to the group in the past, that before

> Xolair came into my

> life, I was completely steroid dependant, at 60mg of

> Prednisone a day, and

> even at that dose, I would frequently end up

> admitted to the hospital on IV

> solu-medrol.

>

> Beyond that, for several years, cycling on and off,

> I have had severe

> tingling/numbness in my arms. More often it is my

> left arm, and along with

> the numbness cycles, I will experience bouts of

> extreme muscle pain/aching.

> This isn't constant, but will occur only during the

> cycles of numbness, and

> is excruciating. The only relief I get is to take

> strong muscle relaxers

> and high dose vicodin together. I'm experiencing a

> bout of this now.

>

> Ages ago, before starting Xolair, out of curiosity,

> on the medical websites,

> I typed shortness of breath, numbness, tingling,

> granulomas, and rashes into

> the search bar. Churg Strauss popped up on every

> single one of them.

>

> Now, I'm curious, because I don't know much if

> anything about this illness.

> My granulomas have been limited to my feet and hands

> thus far, to my

> knowledge, I don't have any on my internal organs,

> but honestly, I've never

> asked the doctors to go searching either, not

> knowing that they could be

> related to my lungs.

>

> My dermatologist seemed incredibly shocked that I

> could have granulomas at

> all given the high doses of steroids I had been on

> in the past...

>

> Xolair has been working quite well for me, but I say

> that compared to how I

> was in years past. I will admit that recently

> (since pollen season has

> begun, and with the recent wet weather in the

> northeast has caused molds to

> increase dramatically) I have been incredibly short

> of breath. My oxygen

> level has been very low (for me) and I am constantly

> coughing and wheezing

> again. It has been suggested by my primary care

> that I run a course of

> prednisone, but being stubborn, I wanted to see if I

> could make it though

> without steroids since I worked so long and hard to

> get off of them and to

> lose the weight that went with it. It's been a

> struggle, I'm back to

> nebbing every 4 hours without fail, and am NEVER

> completely clear. I did

> increase my advair.

>

> What I do know of Churg Strauss, is that it causes

> steroid dependancy... I

> don't know too much else about it. I'll admit that

> for the first time in my

> life, I'm afraid to ask my doctor about it. I don't

> want him thinking that

> I'm looking for more problems.

>

> My neurologist has been screening me for Multiple

> Sclerosis for the past

> several years because of the numbness and tingling

> in my arms. My mother

> and her brother both have MS, so I think it was

> natural for him to jump to

> that conclusion, and for my other doctors to do the

> same. Since Churg

> Strauss seems to be so rare, is it possible that

> this is something that

> could have been overlooked, or is it possible that I

> am in fact reaching?

>

> Any opinions and or information you could all give

> me would be greatly

> appreciated. I'm not usually the type to be timid

> and shy around my doctors

> and I'm usually incredibly knowledgeable about my

> illness. I think I'm

> afraid of being shot down when it could be the most

> important time ever.

>

> Thanks in advance

>

>

>

> [Non-text portions of this message have been

> removed]

>

>

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

Ahhh...imagining that irresistible " new car " smell?

Check outnew cars at Autos.

[Guest guest]

I also meant to add that I did mention the fatigue and the muscle soreness to

the nurse who gives me the xolair. I'll remind her again this next

Wednesday......

maria dunning <dunningml@...> wrote: Since I have been on Xolair

I get significant pain in

my arm muscles near the injection sites(both arms, all

the time). Last month I iced my arm after the shot and

have had some relief in that arm.

--- Currier <redsoxkitten@...> wrote:

> Hello Group!

>

> I was wondering if anyone in this group knows much

> about Churg Strauss

> Syndrome.

>

> I have specific reasons for asking...

>

> I've mentioned to the group in the past, that before

> Xolair came into my

> life, I was completely steroid dependant, at 60mg of

> Prednisone a day, and

> even at that dose, I would frequently end up

> admitted to the hospital on IV

> solu-medrol.

>

> Beyond that, for several years, cycling on and off,

> I have had severe

> tingling/numbness in my arms. More often it is my

> left arm, and along with

> the numbness cycles, I will experience bouts of

> extreme muscle pain/aching.

> This isn't constant, but will occur only during the

> cycles of numbness, and

> is excruciating. The only relief I get is to take

> strong muscle relaxers

> and high dose vicodin together. I'm experiencing a

> bout of this now.

>

> Ages ago, before starting Xolair, out of curiosity,

> on the medical websites,

> I typed shortness of breath, numbness, tingling,

> granulomas, and rashes into

> the search bar. Churg Strauss popped up on every

> single one of them.

>

> Now, I'm curious, because I don't know much if

> anything about this illness.

> My granulomas have been limited to my feet and hands

> thus far, to my

> knowledge, I don't have any on my internal organs,

> but honestly, I've never

> asked the doctors to go searching either, not

> knowing that they could be

> related to my lungs.

>

> My dermatologist seemed incredibly shocked that I

> could have granulomas at

> all given the high doses of steroids I had been on

> in the past...

>

> Xolair has been working quite well for me, but I say

> that compared to how I

> was in years past. I will admit that recently

> (since pollen season has

> begun, and with the recent wet weather in the

> northeast has caused molds to

> increase dramatically) I have been incredibly short

> of breath. My oxygen

> level has been very low (for me) and I am constantly

> coughing and wheezing

> again. It has been suggested by my primary care

> that I run a course of

> prednisone, but being stubborn, I wanted to see if I

> could make it though

> without steroids since I worked so long and hard to

> get off of them and to

> lose the weight that went with it. It's been a

> struggle, I'm back to

> nebbing every 4 hours without fail, and am NEVER

> completely clear. I did

> increase my advair.

>

> What I do know of Churg Strauss, is that it causes

> steroid dependancy... I

> don't know too much else about it. I'll admit that

> for the first time in my

> life, I'm afraid to ask my doctor about it. I don't

> want him thinking that

> I'm looking for more problems.

>

> My neurologist has been screening me for Multiple

> Sclerosis for the past

> several years because of the numbness and tingling

> in my arms. My mother

> and her brother both have MS, so I think it was

> natural for him to jump to

> that conclusion, and for my other doctors to do the

> same. Since Churg

> Strauss seems to be so rare, is it possible that

> this is something that

> could have been overlooked, or is it possible that I

> am in fact reaching?

>

> Any opinions and or information you could all give

> me would be greatly

> appreciated. I'm not usually the type to be timid

> and shy around my doctors

> and I'm usually incredibly knowledgeable about my

> illness. I think I'm

> afraid of being shot down when it could be the most

> important time ever.

>

> Thanks in advance

>

>

>

> [Non-text portions of this message have been

> removed]

>

>

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

Ahhh...imagining that irresistible " new car " smell?

Check outnew cars at Autos.

[Guest guest]

is it possible that the person injecting the xolair is hitting the

muscle, rather than just the flab?? i've done that before -- YOUCH!

(a mistake i will never make again)

>

> > Hello Group!

> >

> > I was wondering if anyone in this group knows much

> > about Churg Strauss

> > Syndrome.

> >

> > I have specific reasons for asking...

> >

> > I've mentioned to the group in the past, that before

> > Xolair came into my

> > life, I was completely steroid dependant, at 60mg of

> > Prednisone a day, and

> > even at that dose, I would frequently end up

> > admitted to the hospital on IV

> > solu-medrol.

> >

> > Beyond that, for several years, cycling on and off,

> > I have had severe

> > tingling/numbness in my arms. More often it is my

> > left arm, and along with

> > the numbness cycles, I will experience bouts of

> > extreme muscle pain/aching.

> > This isn't constant, but will occur only during the

> > cycles of numbness, and

> > is excruciating. The only relief I get is to take

> > strong muscle relaxers

> > and high dose vicodin together. I'm experiencing a

> > bout of this now.

> >

> > Ages ago, before starting Xolair, out of curiosity,

> > on the medical websites,

> > I typed shortness of breath, numbness, tingling,

> > granulomas, and rashes into

> > the search bar. Churg Strauss popped up on every

> > single one of them.

> >

> > Now, I'm curious, because I don't know much if

> > anything about this illness.

> > My granulomas have been limited to my feet and hands

> > thus far, to my

> > knowledge, I don't have any on my internal organs,

> > but honestly, I've never

> > asked the doctors to go searching either, not

> > knowing that they could be

> > related to my lungs.

> >

> > My dermatologist seemed incredibly shocked that I

> > could have granulomas at

> > all given the high doses of steroids I had been on

> > in the past...

> >

> > Xolair has been working quite well for me, but I say

> > that compared to how I

> > was in years past. I will admit that recently

> > (since pollen season has

> > begun, and with the recent wet weather in the

> > northeast has caused molds to

> > increase dramatically) I have been incredibly short

> > of breath. My oxygen

> > level has been very low (for me) and I am constantly

> > coughing and wheezing

> > again. It has been suggested by my primary care

> > that I run a course of

> > prednisone, but being stubborn, I wanted to see if I

> > could make it though

> > without steroids since I worked so long and hard to

> > get off of them and to

> > lose the weight that went with it. It's been a

> > struggle, I'm back to

> > nebbing every 4 hours without fail, and am NEVER

> > completely clear. I did

> > increase my advair.

> >

> > What I do know of Churg Strauss, is that it causes

> > steroid dependancy... I

> > don't know too much else about it. I'll admit that

> > for the first time in my

> > life, I'm afraid to ask my doctor about it. I don't

> > want him thinking that

> > I'm looking for more problems.

> >

> > My neurologist has been screening me for Multiple

> > Sclerosis for the past

> > several years because of the numbness and tingling

> > in my arms. My mother

> > and her brother both have MS, so I think it was

> > natural for him to jump to

> > that conclusion, and for my other doctors to do the

> > same. Since Churg

> > Strauss seems to be so rare, is it possible that

> > this is something that

> > could have been overlooked, or is it possible that I

> > am in fact reaching?

> >

> > Any opinions and or information you could all give

> > me would be greatly

> > appreciated. I'm not usually the type to be timid

> > and shy around my doctors

> > and I'm usually incredibly knowledgeable about my

> > illness. I think I'm

> > afraid of being shot down when it could be the most

> > important time ever.

> >

> > Thanks in advance

> >

> >

> >

> > [Non-text portions of this message have been

> > removed]

> >

> >

>

[Guest guest]

Is it possible the nurse is using the wrong size needle? The needle

for sucking up the dissolved solution into the barrel is something

like an 16 and the needle for injecting is something like a 27. The

higher the number, the SMALLER the needle. Or, possibly she's using a

longer needle than what is packaged for Xolair. If you're thin, it

might be easier to accidentally hit the muscle as has been mentioned -

or even a nerve. When nerves get inflamed they can takes ages to

stop hurting.

I've had 3 series of xolair injections (total of 6 shots) so far and

find my arm is the least sensitive. I'm not having any problem

anywhere but could swear it totally disappears when it goes in my

arm! Of course, I do have fat!!!!

Could you learn to do the actual injection yourself in the doc's

office? Then you could pick your own spot and know exactly what

hurts and what doesn't. The very first time I pressed on the plunger

a tad bit " fast " and could feel pressure. I'm aware of that now and

no longer feel pressure since I'm absolutely in control of my own

injections.

> >

> >

>

[Guest guest]

I inject in the fatty tissue in my stomach and leg, and don't have

any problems in this area.

Addy

Group co-owner

> > >

> > >

> >

>

[Guest guest]

Thanks for the input. I do alternate arms and have had

been using Xolair for 14 months. Pain began in

October, several months into the treatment. I really

think that the icing helped and perhaps the

complaining made a difference in how the nurses

injected me.

Doc will not let me inject. I am part of a study.

> > >

> > >

> >

>

>

>

[Guest guest]

I get bruises the size of a silver dollar in each arm for the shot

I have been on this shot for two years but am still experiencing

asthma attacks. Wonder if I am getting the placebo.

I still need the rescue inhaler to jumpstart my day and am on/off

prednisone. It's like a rollercoaster. I hate it

>

> > Hello Group!

> >

> > I was wondering if anyone in this group knows much

> > about Churg Strauss

> > Syndrome.

> >

> > I have specific reasons for asking...

> >

> > I've mentioned to the group in the past, that before

> > Xolair came into my

> > life, I was completely steroid dependant, at 60mg of

> > Prednisone a day, and

> > even at that dose, I would frequently end up

> > admitted to the hospital on IV

> > solu-medrol.

> >

> > Beyond that, for several years, cycling on and off,

> > I have had severe

> > tingling/numbness in my arms. More often it is my

> > left arm, and along with

> > the numbness cycles, I will experience bouts of

> > extreme muscle pain/aching.

> > This isn't constant, but will occur only during the

> > cycles of numbness, and

> > is excruciating. The only relief I get is to take

> > strong muscle relaxers

> > and high dose vicodin together. I'm experiencing a

> > bout of this now.

> >

> > Ages ago, before starting Xolair, out of curiosity,

> > on the medical websites,

> > I typed shortness of breath, numbness, tingling,

> > granulomas, and rashes into

> > the search bar. Churg Strauss popped up on every

> > single one of them.

> >

> > Now, I'm curious, because I don't know much if

> > anything about this illness.

> > My granulomas have been limited to my feet and hands

> > thus far, to my

> > knowledge, I don't have any on my internal organs,

> > but honestly, I've never

> > asked the doctors to go searching either, not

> > knowing that they could be

> > related to my lungs.

> >

> > My dermatologist seemed incredibly shocked that I

> > could have granulomas at

> > all given the high doses of steroids I had been on

> > in the past...

> >

> > Xolair has been working quite well for me, but I say

> > that compared to how I

> > was in years past. I will admit that recently

> > (since pollen season has

> > begun, and with the recent wet weather in the

> > northeast has caused molds to

> > increase dramatically) I have been incredibly short

> > of breath. My oxygen

> > level has been very low (for me) and I am constantly

> > coughing and wheezing

> > again. It has been suggested by my primary care

> > that I run a course of

> > prednisone, but being stubborn, I wanted to see if I

> > could make it though

> > without steroids since I worked so long and hard to

> > get off of them and to

> > lose the weight that went with it. It's been a

> > struggle, I'm back to

> > nebbing every 4 hours without fail, and am NEVER

> > completely clear. I did

> > increase my advair.

> >

> > What I do know of Churg Strauss, is that it causes

> > steroid dependancy... I

> > don't know too much else about it. I'll admit that

> > for the first time in my

> > life, I'm afraid to ask my doctor about it. I don't

> > want him thinking that

> > I'm looking for more problems.

> >

> > My neurologist has been screening me for Multiple

> > Sclerosis for the past

> > several years because of the numbness and tingling

> > in my arms. My mother

> > and her brother both have MS, so I think it was

> > natural for him to jump to

> > that conclusion, and for my other doctors to do the

> > same. Since Churg

> > Strauss seems to be so rare, is it possible that

> > this is something that

> > could have been overlooked, or is it possible that I

> > am in fact reaching?

> >

> > Any opinions and or information you could all give

> > me would be greatly

> > appreciated. I'm not usually the type to be timid

> > and shy around my doctors

> > and I'm usually incredibly knowledgeable about my

> > illness. I think I'm

> > afraid of being shot down when it could be the most

> > important time ever.

> >

> > Thanks in advance

> >

> >

> >

> > [Non-text portions of this message have been

> > removed]

> >

> >

>

[Guest guest]

--- In , " meencantador " <meencantador@...>

wrote:

>

> I get bruises the size of a silver dollar in each arm for the shot

> I have been on this shot for two years but am still experiencing

> asthma attacks. Wonder if I am getting the placebo.

>

> I still need the rescue inhaler to jumpstart my day and am on/off

> prednisone. It's like a rollercoaster. I hate it

>

>

I have to have a jumpstart every morning myself. How are you overall

asthma symptoms? I used to have to neb 4-6 times a day with atrovent

and pulmicort, advair 500/50 twice daily and was on 40

mg of pred. Now I am down to nebbing 1-2 times a day with xopenex.

NO pred, NO Pulmicort, NO atrovent and NO advair.

Unfortunately, there is no cure for asthma.....just medications to

control it. For most people, Xolair has been a great weapon in our

fight to breathe.

If you are not any better after being on xolair for two years, you

need to have a long serious talk with your doctor.

Doug

Group founder

on Xolair since

September 2003

[Guest guest]

I am on advair 500/50 and 60mg of prednisone

I use the neb 2x a day xopenex. These meds give me the shakes badly followed

by bad headaches.

I am slowly improving and have a lot of dr's working with me to get me on

track

In the last 6 months my peak flows have gone up, except I am still in physical

pain

I am enjoying this group. I do not feel so alone.

uca79iii <bme1979@...> wrote:

--- In , " meencantador " <meencantador@...>

wrote:

>

> I get bruises the size of a silver dollar in each arm for the shot

> I have been on this shot for two years but am still experiencing

> asthma attacks. Wonder if I am getting the placebo.

>

> I still need the rescue inhaler to jumpstart my day and am on/off

> prednisone. It's like a rollercoaster. I hate it

>

>

I have to have a jumpstart every morning myself. How are you overall

asthma symptoms? I used to have to neb 4-6 times a day with atrovent

and pulmicort, advair 500/50 twice daily and was on 40

mg of pred. Now I am down to nebbing 1-2 times a day with xopenex.

NO pred, NO Pulmicort, NO atrovent and NO advair.

Unfortunately, there is no cure for asthma.....just medications to

control it. For most people, Xolair has been a great weapon in our

fight to breathe.

If you are not any better after being on xolair for two years, you

need to have a long serious talk with your doctor.

Doug

Group founder

on Xolair since

September 2003

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

Ahhh...imagining that irresistible " new car " smell?

Check outnew cars at Autos.

[Guest guest]

>

> I am on advair 500/50 and 60mg of prednisone

> I use the neb 2x a day xopenex. These meds give me the shakes

badly followed by bad headaches.

>

> I am slowly improving and have a lot of dr's working with me to

get me on track

>

> In the last 6 months my peak flows have gone up, except I am still

in physical pain

>

> I am enjoying this group. I do not feel so alone.

>

>

welcome to the group and NO you are not alone. I started this group

in September 2003 when I was first introduced to Xolair. There was no

group or support online whatsoever so I started this group.

Glad to have you aboard

Doug

Group founder

[Guest guest]

Hi,

My name is Sr. Volz, C.R. I have been diagnosed with asthma since 1988

but have been told by my pulmonary doctor that I have had it since I was a

child. I am one of the border line ones that are hard to diagnose.

I have been on 60 mgs of predisone and that is enough to send me goofy and

nebs every 3-4 hours. It is needed to get my asthma back under some control

especially after it has been set off. Then I and the doctor start taking it

down. So hang in there it will get better. I would watch triggers and

allergens that you have.

Good luck. Hope this gives you some encouragement to continue. Xolair has made

a difference for me.

Breath one breath at a time.

Sr. Volz, C.R.

B G <meencantador@...> wrote:

I am on advair 500/50 and 60mg of prednisone

I use the neb 2x a day xopenex. These meds give me the shakes badly followed by

bad headaches.

I am slowly improving and have a lot of dr's working with me to get me on track

In the last 6 months my peak flows have gone up, except I am still in physical

pain

I am enjoying this group. I do not feel so alone.

uca79iii <bme1979@...> wrote:

--- In , " meencantador " <meencantador@...>

wrote:

>

> I get bruises the size of a silver dollar in each arm for the shot

> I have been on this shot for two years but am still experiencing

> asthma attacks. Wonder if I am getting the placebo.

>

> I still need the rescue inhaler to jumpstart my day and am on/off

> prednisone. It's like a rollercoaster. I hate it

>

>

I have to have a jumpstart every morning myself. How are you overall

asthma symptoms? I used to have to neb 4-6 times a day with atrovent

and pulmicort, advair 500/50 twice daily and was on 40

mg of pred. Now I am down to nebbing 1-2 times a day with xopenex.

NO pred, NO Pulmicort, NO atrovent and NO advair.

Unfortunately, there is no cure for asthma.....just medications to

control it. For most people, Xolair has been a great weapon in our

fight to breathe.

If you are not any better after being on xolair for two years, you

need to have a long serious talk with your doctor.

Doug

Group founder

on Xolair since

September 2003

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

Ahhh...imagining that irresistible " new car " smell?

Check outnew cars at Autos.

[Guest guest]

Just out of curiosity , what dosage of Zolair are you

on every month. Do you get it once or twice per month

and a you get three shots or two shots each time you

get the Xolair?!

--- Volz <busnun@...> wrote:

> Hi,

> My name is Sr. Volz, C.R. I have been

> diagnosed with asthma since 1988 but have been told

> by my pulmonary doctor that I have had it since I

> was a child. I am one of the border line ones that

> are hard to diagnose.

> I have been on 60 mgs of predisone and that is

> enough to send me goofy and nebs every 3-4 hours. It

> is needed to get my asthma back under some control

> especially after it has been set off. Then I and

> the doctor start taking it down. So hang in there

> it will get better. I would watch triggers and

> allergens that you have.

>

> Good luck. Hope this gives you some encouragement

> to continue. Xolair has made a difference for me.

>

> Breath one breath at a time.

> Sr. Volz, C.R.

>

> B G <meencantador@...> wrote:

> I am on advair 500/50 and 60mg of

> prednisone

> I use the neb 2x a day xopenex. These meds give me

> the shakes badly followed by bad headaches.

>

> I am slowly improving and have a lot of dr's working

> with me to get me on track

>

> In the last 6 months my peak flows have gone up,

> except I am still in physical pain

>

> I am enjoying this group. I do not feel so alone.

>

>

>

> uca79iii <bme1979@...> wrote:

>

> >

> > I get bruises the size of a silver dollar in each

> arm for the shot

> > I have been on this shot for two years but am

> still experiencing

> > asthma attacks. Wonder if I am getting the

> placebo.

> >

> > I still need the rescue inhaler to jumpstart my

> day and am on/off

> > prednisone. It's like a rollercoaster. I hate it

>

> >

> >

>

> I have to have a jumpstart every morning myself. How

> are you overall

> asthma symptoms? I used to have to neb 4-6 times a

> day with atrovent

> and pulmicort, advair 500/50 twice daily and was on

> 40

> mg of pred. Now I am down to nebbing 1-2 times a day

> with xopenex.

> NO pred, NO Pulmicort, NO atrovent and NO advair.

>

> Unfortunately, there is no cure for asthma.....just

> medications to

> control it. For most people, Xolair has been a great

> weapon in our

> fight to breathe.

>

> If you are not any better after being on xolair for

> two years, you

> need to have a long serious talk with your doctor.

>

> Doug

> Group founder

> on Xolair since

> September 2003

>

> ---------------------------------

> Ahhh...imagining that irresistible " new car " smell?

> Check outnew cars at Autos.

>

> [Non-text portions of this message have been

> removed]

>

>

>

>

>

>

> ---------------------------------

> Ahhh...imagining that irresistible " new car " smell?

> Check outnew cars at Autos.

>

> [Non-text portions of this message have been

> removed]

>

>

__________________________________________________

[Guest guest]

hello

in answer to your questions. I get a shot once a month. 300 mg, one shot in

each arm

thanks for your response.

be well

B

K K <grneyyedlady@...> wrote:

Just out of curiosity , what dosage of Zolair are you

on every month. Do you get it once or twice per month

and a you get three shots or two shots each time you

get the Xolair?!

--- Volz <busnun@...> wrote:

> Hi,

> My name is Sr. Volz, C.R. I have been

> diagnosed with asthma since 1988 but have been told

> by my pulmonary doctor that I have had it since I

> was a child. I am one of the border line ones that

> are hard to diagnose.

> I have been on 60 mgs of predisone and that is

> enough to send me goofy and nebs every 3-4 hours. It

> is needed to get my asthma back under some control

> especially after it has been set off. Then I and

> the doctor start taking it down. So hang in there

> it will get better. I would watch triggers and

> allergens that you have.

>

> Good luck. Hope this gives you some encouragement

> to continue. Xolair has made a difference for me.

>

> Breath one breath at a time.

> Sr. Volz, C.R.

>

> B G <meencantador@...> wrote:

> I am on advair 500/50 and 60mg of

> prednisone

> I use the neb 2x a day xopenex. These meds give me

> the shakes badly followed by bad headaches.

>

> I am slowly improving and have a lot of dr's working

> with me to get me on track

>

> In the last 6 months my peak flows have gone up,

> except I am still in physical pain

>

> I am enjoying this group. I do not feel so alone.

>

>

>

> uca79iii <bme1979@...> wrote:

>

> >

> > I get bruises the size of a silver dollar in each

> arm for the shot

> > I have been on this shot for two years but am

> still experiencing

> > asthma attacks. Wonder if I am getting the

> placebo.

> >

> > I still need the rescue inhaler to jumpstart my

> day and am on/off

> > prednisone. It's like a rollercoaster. I hate it

>

> >

> >

>

> I have to have a jumpstart every morning myself. How

> are you overall

> asthma symptoms? I used to have to neb 4-6 times a

> day with atrovent

> and pulmicort, advair 500/50 twice daily and was on

> 40

> mg of pred. Now I am down to nebbing 1-2 times a day

> with xopenex.

> NO pred, NO Pulmicort, NO atrovent and NO advair.

>

> Unfortunately, there is no cure for asthma.....just

> medications to

> control it. For most people, Xolair has been a great

> weapon in our

> fight to breathe.

>

> If you are not any better after being on xolair for

> two years, you

> need to have a long serious talk with your doctor.

>

> Doug

> Group founder

> on Xolair since

> September 2003

>

> ---------------------------------

> Ahhh...imagining that irresistible " new car " smell?

> Check outnew cars at Autos.

>

> [Non-text portions of this message have been

> removed]

>

>

>

>

>

>

> ---------------------------------

> Ahhh...imagining that irresistible " new car " smell?

> Check outnew cars at Autos.

>

> [Non-text portions of this message have been

> removed]

>

>

__________________________________________________

[Guest guest]

Thanks! After reading that I had a thought. MAYBE

your dose isn't high enough. I do my own shots and my

script is for 150 mg in each arm /thigh TWICE per

month. I know of a few kids (that are 12 or older)

who are on Xolair and they get 3 injections every two

weeks!

I think that because I get poked twice per month, it

may be one of the reasons why I saw results sooner

than a lot of the people in here who only get it once

per month. I was a MESS before I was on Xolair. Was

on EVERYTHING including 80mg of the evil candy per

day.

You might want to consider asking your doctor to

adjust your dosage. Granted this all depends on your

height/weight and severity of your allergic asthma.

--- B G <meencantador@...> wrote:

> hello

>

> in answer to your questions. I get a shot once a

> month. 300 mg, one shot in each arm

>

> thanks for your response.

>

> be well

>

> B

>

> K K <grneyyedlady@...> wrote:

> Just out of curiosity , what dosage of

> Zolair are you

> on every month. Do you get it once or twice per

> month

> and a you get three shots or two shots each time you

> get the Xolair?!

>

> --- Volz <busnun@...> wrote:

>

> > Hi,

> > My name is Sr. Volz, C.R. I have been

> > diagnosed with asthma since 1988 but have been

> told

> > by my pulmonary doctor that I have had it since I

> > was a child. I am one of the border line ones that

> > are hard to diagnose.

> > I have been on 60 mgs of predisone and that is

> > enough to send me goofy and nebs every 3-4 hours.

> It

> > is needed to get my asthma back under some control

> > especially after it has been set off. Then I and

> > the doctor start taking it down. So hang in there

> > it will get better. I would watch triggers and

> > allergens that you have.

> >

> > Good luck. Hope this gives you some encouragement

> > to continue. Xolair has made a difference for me.

> >

> > Breath one breath at a time.

> > Sr. Volz, C.R.

> >

> > B G <meencantador@...> wrote:

> > I am on advair 500/50 and 60mg of

> > prednisone

> > I use the neb 2x a day xopenex. These meds give me

> > the shakes badly followed by bad headaches.

> >

> > I am slowly improving and have a lot of dr's

> working

> > with me to get me on track

> >

> > In the last 6 months my peak flows have gone up,

> > except I am still in physical pain

> >

> > I am enjoying this group. I do not feel so alone.

> >

> >

> >

> > uca79iii <bme1979@...> wrote:

> >

> > >

> > > I get bruises the size of a silver dollar in

> each

> > arm for the shot

> > > I have been on this shot for two years but am

> > still experiencing

> > > asthma attacks. Wonder if I am getting the

> > placebo.

> > >

> > > I still need the rescue inhaler to jumpstart my

> > day and am on/off

> > > prednisone. It's like a rollercoaster. I hate it

> >

> > >

> > >

> >

> > I have to have a jumpstart every morning myself.

> How

> > are you overall

> > asthma symptoms? I used to have to neb 4-6 times a

> > day with atrovent

> > and pulmicort, advair 500/50 twice daily and was

> on

> > 40

> > mg of pred. Now I am down to nebbing 1-2 times a

> day

> > with xopenex.

> > NO pred, NO Pulmicort, NO atrovent and NO advair.

> >

> > Unfortunately, there is no cure for

> asthma.....just

> > medications to

> > control it. For most people, Xolair has been a

> great

> > weapon in our

> > fight to breathe.

> >

> > If you are not any better after being on xolair

> for

> > two years, you

> > need to have a long serious talk with your doctor.

> >

> > Doug

> > Group founder

> > on Xolair since

> > September 2003

> >

> > ---------------------------------

> > Ahhh...imagining that irresistible " new car "

> smell?

> > Check outnew cars at Autos.

> >

> > [Non-text portions of this message have been

> > removed]

> >

> >

> >

> >

> >

> >

> > ---------------------------------

> > Ahhh...imagining that irresistible " new car "

> smell?

> > Check outnew cars at Autos.

> >

> > [Non-text portions of this message have been

> > removed]

> >

> >

>

> __________________________________________________

>

[Guest guest]

Hi,

I am on Xolair, two shots once a month. My doctor just made a change because

I have been on predisone for too long and she wants me off. Last year I did

well on two shots a month but this year there is something that keeps triggering

me in my house or it is the perfume or bath soap that smells. or the

deodarizors. So the doctor wants to get me off of predisone and then see if we

can go down on the Xolair. Because of the amount of money for each shot. She

wants me to get two shots twice a month. Will see how this goes. I have been

on Xolair for 3 years. And had really good luck.

Good luck,

Sr. Volz, C.R.

K K <grneyyedlady@...> wrote:

Just out of curiosity , what dosage of Zolair are you

on every month. Do you get it once or twice per month

and a you get three shots or two shots each time you

get the Xolair?!

--- Volz <busnun@...> wrote:

> Hi,

> My name is Sr. Volz, C.R. I have been

> diagnosed with asthma since 1988 but have been told

> by my pulmonary doctor that I have had it since I

> was a child. I am one of the border line ones that

> are hard to diagnose.

> I have been on 60 mgs of predisone and that is

> enough to send me goofy and nebs every 3-4 hours. It

> is needed to get my asthma back under some control

> especially after it has been set off. Then I and

> the doctor start taking it down. So hang in there

> it will get better. I would watch triggers and

> allergens that you have.

>

> Good luck. Hope this gives you some encouragement

> to continue. Xolair has made a difference for me.

>

> Breath one breath at a time.

> Sr. Volz, C.R.

>

> B G <meencantador@...> wrote:

> I am on advair 500/50 and 60mg of

> prednisone

> I use the neb 2x a day xopenex. These meds give me

> the shakes badly followed by bad headaches.

>

> I am slowly improving and have a lot of dr's working

> with me to get me on track

>

> In the last 6 months my peak flows have gone up,

> except I am still in physical pain

>

> I am enjoying this group. I do not feel so alone.

>

>

>

> uca79iii <bme1979@...> wrote:

>

> >

> > I get bruises the size of a silver dollar in each

> arm for the shot

> > I have been on this shot for two years but am

> still experiencing

> > asthma attacks. Wonder if I am getting the

> placebo.

> >

> > I still need the rescue inhaler to jumpstart my

> day and am on/off

> > prednisone. It's like a rollercoaster. I hate it

>

> >

> >

>

> I have to have a jumpstart every morning myself. How

> are you overall

> asthma symptoms? I used to have to neb 4-6 times a

> day with atrovent

> and pulmicort, advair 500/50 twice daily and was on

> 40

> mg of pred. Now I am down to nebbing 1-2 times a day

> with xopenex.

> NO pred, NO Pulmicort, NO atrovent and NO advair.

>

> Unfortunately, there is no cure for asthma.....just

> medications to

> control it. For most people, Xolair has been a great

> weapon in our

> fight to breathe.

>

> If you are not any better after being on xolair for

> two years, you

> need to have a long serious talk with your doctor.

>

> Doug

> Group founder

> on Xolair since

> September 2003

>

> ---------------------------------

> Ahhh...imagining that irresistible " new car " smell?

> Check outnew cars at Autos.

>

> [Non-text portions of this message have been

> removed]

>

>

>

>

>

>

> ---------------------------------

> Ahhh...imagining that irresistible " new car " smell?

> Check outnew cars at Autos.

>

> [Non-text portions of this message have been

> removed]

>

>

__________________________________________________

[Guest guest]

I get three shots every two weeks. When I switched insurances and had

to be off Xolair for a while, my doc put me on two shots every two

weeks when I started back, just to see how I'd do. That didn't help

very much, but the extra half dose each two weeks seems to make a HUGE

amount of difference, at least for me. THEREFORE, I expect you will

see sufficient improvement if you go to two shots every two weeks so

that you can ween yourself off pred, or at least decrease your dosage

considerably. I know that has been able to decrease to a

reasonably low maintenance dose and I think some of the rest of us

have. I'm at the point where I need a couple of pred tapers a year

and that's it!

Addy

Group co-owner

> > >

> > > I get bruises the size of a silver dollar in each

> > arm for the shot

> > > I have been on this shot for two years but am

> > still experiencing

> > > asthma attacks. Wonder if I am getting the

> > placebo.

> > >

> > > I still need the rescue inhaler to jumpstart my

> > day and am on/off

> > > prednisone. It's like a rollercoaster. I hate it

> >

> > >

> > >

> >

> > I have to have a jumpstart every morning myself. How

> > are you overall

> > asthma symptoms? I used to have to neb 4-6 times a

> > day with atrovent

> > and pulmicort, advair 500/50 twice daily and was on

> > 40

> > mg of pred. Now I am down to nebbing 1-2 times a day

> > with xopenex.

> > NO pred, NO Pulmicort, NO atrovent and NO advair.

> >

> > Unfortunately, there is no cure for asthma.....just

> > medications to

> > control it. For most people, Xolair has been a great

> > weapon in our

> > fight to breathe.

> >

> > If you are not any better after being on xolair for

> > two years, you

> > need to have a long serious talk with your doctor.

> >

> > Doug

> > Group founder

> > on Xolair since

> > September 2003

> >

> > ---------------------------------

> > Ahhh...imagining that irresistible " new car " smell?

> > Check outnew cars at Autos.

> >

> > [Non-text portions of this message have been

> > removed]

> >

> >

> >

> >

> >

> >

> > ---------------------------------

> > Ahhh...imagining that irresistible " new car " smell?

> > Check outnew cars at Autos.

> >

> > [Non-text portions of this message have been

> > removed]

> >

> >

>

> __________________________________________________

>

[Guest guest]

are you my twin> you sound like me in many ways

I am enjoy this site, I feel for once ppl understand me and I can relate to

them

this is great

Volz <busnun@...> wrote:

Hi,

I am on Xolair, two shots once a month. My doctor just made a change because I

have been on predisone for too long and she wants me off. Last year I did well

on two shots a month but this year there is something that keeps triggering me

in my house or it is the perfume or bath soap that smells. or the deodarizors.

So the doctor wants to get me off of predisone and then see if we can go down on

the Xolair. Because of the amount of money for each shot. She wants me to get

two shots twice a month. Will see how this goes. I have been on Xolair for 3

years. And had really good luck.

Good luck,

Sr. Volz, C.R.

K K <grneyyedlady@...> wrote:

Just out of curiosity , what dosage of Zolair are you

on every month. Do you get it once or twice per month

and a you get three shots or two shots each time you

get the Xolair?!

--- Volz <busnun@...> wrote:

> Hi,

> My name is Sr. Volz, C.R. I have been

> diagnosed with asthma since 1988 but have been told

> by my pulmonary doctor that I have had it since I

> was a child. I am one of the border line ones that

> are hard to diagnose.

> I have been on 60 mgs of predisone and that is

> enough to send me goofy and nebs every 3-4 hours. It

> is needed to get my asthma back under some control

> especially after it has been set off. Then I and

> the doctor start taking it down. So hang in there

> it will get better. I would watch triggers and

> allergens that you have.

>

> Good luck. Hope this gives you some encouragement

> to continue. Xolair has made a difference for me.

>

> Breath one breath at a time.

> Sr. Volz, C.R.

>

> B G <meencantador@...> wrote:

> I am on advair 500/50 and 60mg of

> prednisone

> I use the neb 2x a day xopenex. These meds give me

> the shakes badly followed by bad headaches.

>

> I am slowly improving and have a lot of dr's working

> with me to get me on track

>

> In the last 6 months my peak flows have gone up,

> except I am still in physical pain

>

> I am enjoying this group. I do not feel so alone.

>

>

>

> uca79iii <bme1979@...> wrote:

>

> >

> > I get bruises the size of a silver dollar in each

> arm for the shot

> > I have been on this shot for two years but am

> still experiencing

> > asthma attacks. Wonder if I am getting the

> placebo.

> >

> > I still need the rescue inhaler to jumpstart my

> day and am on/off

> > prednisone. It's like a rollercoaster. I hate it

>

> >

> >

>

> I have to have a jumpstart every morning myself. How

> are you overall

> asthma symptoms? I used to have to neb 4-6 times a

> day with atrovent

> and pulmicort, advair 500/50 twice daily and was on

> 40

> mg of pred. Now I am down to nebbing 1-2 times a day

> with xopenex.

> NO pred, NO Pulmicort, NO atrovent and NO advair.

>

> Unfortunately, there is no cure for asthma.....just

> medications to

> control it. For most people, Xolair has been a great

> weapon in our

> fight to breathe.

>

> If you are not any better after being on xolair for

> two years, you

> need to have a long serious talk with your doctor.

>

> Doug

> Group founder

> on Xolair since

> September 2003

>

> ---------------------------------

> Ahhh...imagining that irresistible " new car " smell?

> Check outnew cars at Autos.

>

> [Non-text portions of this message have been

> removed]

>

>

>

>

>

>

> ---------------------------------

> Ahhh...imagining that irresistible " new car " smell?

> Check outnew cars at Autos.

>

> [Non-text portions of this message have been

> removed]

>

>

__________________________________________________