Serious Complications After Xolair Injections

[Guest guest]

I am asking for help and don't know where to turn. I am a severe

asthmatic and take a daily regimen of medicine to control my asthma.

Due to my dependence on steroids, over several years and the negative

side effects associated with their long term use, my Pulmonologist

suggested that I try Xolair. After extensively researching this

newly approved drug, I began taking Xolair in November 2003, one (1)

dose; then February 2004, one (1) dose and then May 2004 until

September 2004, monthly. The one (1) month increments came as my

insurance companies were in a dispute as to how the cost of this

medication was to be covered. Immediately I began to feel better the

day after my first set of injections. This new found relief lasted

until the end of the third week and I looked forward to my next set

of injections. I began to notice swelling in my arms in the

immediate area of the injection site.

I did not experience any other of the primary listed side effects and

was able to breathe better and even reduce the amount of steroids I

was taking over several months. It always tingled and burned when

the reconstituted solution was injected. I could have been a poster

child for Xolair up to this point. Then on the third consecutive

month of the injections, the RN injected me with the Xolair and I

noticed that it did not burn. In addition, the next day I noticed

there was no relief that I had come to look forward to each month.

It was this set of injections that I believe have lead me to the road

that I now traverse. This was the first time this RN injected me,

and was his last. My final two (2) sets of injections were given by

another RN.

Then I started to witness the lesser known side effects of Xolair.

These are " pain, tiredness, joint pain … leg pain, arm pain. " These

are listed on their own web site, under Important Safety

Information.

I began to experience mild to moderate pain in my hands, arms,

forearms and legs. My hands have become disfigured and I am unable

to open my right hand and am unable to grip anything more than a

pillow, with moderate to severe pain. My left hand is getting worse

and I fear losing all dexterity in my hands. My hands are

continually hard and several fingers on my right hand are permanently

numb. I have severe pain in my legs from my ankles to my shins,

thighs and hamstrings. The veins in my arms and legs are protrusive

and are severely painful to the touch. My skin is constantly

swollen and shinny. I am sore to the touch in my extremities. The

half-life on Xolair was supposed to be two (2) months.

Since September 2004, my condition has continued to worsen. From the

initial problems with my hands, then hands and arms; to my feet,

legs, hands and arms. I have basically become bedridden except for

going to Doctor appointments. I have found an Allergist, a

Rheumatologist and a Pulmonologist that are still trying to diagnose

what is wrong with me. I am on maximum pain medication (Duragesic

Patch 100 mg; Percocet 2 pills, 6X daily and Vicodin ES when

necessary) around the clock, that only numbs my mind, even thought

the severe pain is always there.

I have had numerous blood tests and recently have had two (2) deep

tissue biopsy's. The first findings came back " a sparse superficial

and mid-dermal perivascular infiltrate consists predominantly of

lymphocytes. " The second findings came back " mild superficial per

vascular dermatitis. Note: rare plasma cells are notes. No

definitive evidence of vasculitis is noted. " The slides are now in

the hands of my Allergist who has a contact with Novartis. I hope

that this leads to their involvement in a diagnosis after seven (7)

months of a slow hell.

I have seen a Hematologist, with regards to the last biopsy and an

elevated eosinophil level of 1512 on a blood test taken two (2)

weeks ago. This level was described to me by my Rheumatologist as at

18%. The subsequent blood test taken at the Hematologist's office

showed a decrease in the eosinophil level to 9%. My Rheumatologist

stated that he hopes that this shows that my allergic reaction is

beginning to get better. I have my doubts, but continue to have

hope. Prior to these two (2) blood tests, all my blood tests were

normal.

My allergist asked for me to find a team to work with him in helping

to combat my present situation. I finally made an appointment this

past week to see him, after not hearing a word from him in over two

(2) months. His response to me was that he was happy to see me, to

remind him to light a fire for him to attempt to e-mail his contact

at the drug company. He is my link to Novartis. I speak with my

Pulmonologist on a twice weekly basis. I have a standing appointment

with my Rheumatologist, every two (2) weeks. During the past few

months he has been eliminating possible causes in his ongoing

diagnosis. He seems at a loss and asked that I contact you for

help.

Pursuant to my discussions with these Doctor's and also my knowing my

own body and the research that I have done on the internet, there is

only one cause to this debilitating situation. This is the Xolair.

However, since this is a new drug, nobody seems to want to confront

Novartis about my condition.

My situation is becoming more dire. The pain is not tolerable, even

with pain medication. I am now addicted to these medications and

dread having to go through detox. This however, should be the worse

of my worries. My muscles are becoming atrophied. My ulnar nerves

(I think), in my arms, are in knots and wake me up with severe pain

while I sleep. I have pain deep behind my knees and now I have

noticed that my toes don't touch the ground when I do walk. I am

unable to work. I have limited mobility in my hands, which are my

livelihood. I have become a mess, both physically and emotionally.

I attempt range of motion exercises on my own. I am awaiting for my

heath organization to approve me for Hydro Therapy. I have been

waiting for approval for over three (3) months now. They did approve

me for Occupational Therapy, however, the therapist felt that I was

not a candidate for this therapy. She even spoke to my

Rheumatologist, herself, fearing that she would hurt me more.

I can only lay on my back, with my legs elevated, for approximately

20 hours a day. I feel that there is no hope and that my condition

is becoming more permanent than temporary, due to this drug

interaction. My quality of life has deteriorated as I am unable to

assist in helping my son, let alone myself in the basic necessities

of taking care of myself. I can't get down a flight of stairs,

without help and only leave the confines of my room for Doctor

appointments and once a week on Saturdays.

I have searched thru posts, but have not come up with anything like

my symptoms. Please help!!!

[Guest guest]

Donna, I don't pretend to be an expert on this subject, but the symptoms you

are complaining about are ALL symptoms my mother suffers from in her battle

with Multiple Sclerosis. I'm not trying to scare you, and I'm certainly not

saying that you have MS. I'm just letting you know that it can't hurt to

see a neurologist... it's QUITE POSSIBLE that you are suffering from a

neurological illness that has nothing to do with your Xolair treatment.

True, many of these symptoms are listed as possible side

effects/complications from Xolair use.

But please... think outside the box and investigate ALL avenues. It can't

HURT to rule something out. My grandmother was an RN for thirty years and

she always used to say to me... you never know what a problem IS... until

you start ruling out what it CAN'T be. There are MANY MANY neurological and

auto immune illnesses (even lupus) that could cover almost every

complaint/complication you've listed.

Sounds like you have good doctors. If they are REALLY good, they will

listen to your concerns. Ask them to refer you to a neurologist. It can't

hurt!

Best of luck, please keep us informed!

~

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

From: Donna

Date: 04/25/05 18:15:40

Subject: [ ] Serious Complications After Xolair Injections

I am asking for help and don't know where to turn. I am a severe

asthmatic and take a daily regimen of medicine to control my asthma.

Due to my dependence on steroids, over several years and the negative

side effects associated with their long term use, my Pulmonologist

suggested that I try Xolair. After extensively researching this

newly approved drug, I began taking Xolair in November 2003, one (1)

dose; then February 2004, one (1) dose and then May 2004 until

September 2004, monthly. The one (1) month increments came as my

insurance companies were in a dispute as to how the cost of this

medication was to be covered. Immediately I began to feel better the

day after my first set of injections. This new found relief lasted

until the end of the third week and I looked forward to my next set

of injections. I began to notice swelling in my arms in the

immediate area of the injection site.

I did not experience any other of the primary listed side effects and

was able to breathe better and even reduce the amount of steroids I

was taking over several months. It always tingled and burned when

the reconstituted solution was injected. I could have been a poster

child for Xolair up to this point. Then on the third consecutive

month of the injections, the RN injected me with the Xolair and I

noticed that it did not burn. In addition, the next day I noticed

there was no relief that I had come to look forward to each month.

It was this set of injections that I believe have lead me to the road

that I now traverse. This was the first time this RN injected me,

and was his last. My final two (2) sets of injections were given by

another RN.

Then I started to witness the lesser known side effects of Xolair.

These are " pain, tiredness, joint pain … leg pain, arm pain. " These

are listed on their own web site, under Important Safety

Information.

I began to experience mild to moderate pain in my hands, arms,

forearms and legs. My hands have become disfigured and I am unable

to open my right hand and am unable to grip anything more than a

pillow, with moderate to severe pain. My left hand is getting worse

and I fear losing all dexterity in my hands. My hands are

continually hard and several fingers on my right hand are permanently

numb. I have severe pain in my legs from my ankles to my shins,

thighs and hamstrings. The veins in my arms and legs are protrusive

and are severely painful to the touch. My skin is constantly

swollen and shinny. I am sore to the touch in my extremities. The

half-life on Xolair was supposed to be two (2) months.

Since September 2004, my condition has continued to worsen. From the

initial problems with my hands, then hands and arms; to my feet,

legs, hands and arms. I have basically become bedridden except for

going to Doctor appointments. I have found an Allergist, a

Rheumatologist and a Pulmonologist that are still trying to diagnose

what is wrong with me. I am on maximum pain medication (Duragesic

Patch 100 mg; Percocet 2 pills, 6X daily and Vicodin ES when

necessary) around the clock, that only numbs my mind, even thought

the severe pain is always there.

I have had numerous blood tests and recently have had two (2) deep

tissue biopsy's. The first findings came back " a sparse superficial

and mid-dermal perivascular infiltrate consists predominantly of

lymphocytes. " The second findings came back " mild superficial per

vascular dermatitis. Note: rare plasma cells are notes. No

definitive evidence of vasculitis is noted. " The slides are now in

the hands of my Allergist who has a contact with Novartis. I hope

that this leads to their involvement in a diagnosis after seven (7)

months of a slow hell.

I have seen a Hematologist, with regards to the last biopsy and an

elevated eosinophil level of 1512 on a blood test taken two (2)

weeks ago. This level was described to me by my Rheumatologist as at

18%. The subsequent blood test taken at the Hematologist's office

showed a decrease in the eosinophil level to 9%. My Rheumatologist

stated that he hopes that this shows that my allergic reaction is

beginning to get better. I have my doubts, but continue to have

hope. Prior to these two (2) blood tests, all my blood tests were

normal.

My allergist asked for me to find a team to work with him in helping

to combat my present situation. I finally made an appointment this

past week to see him, after not hearing a word from him in over two

(2) months. His response to me was that he was happy to see me, to

remind him to light a fire for him to attempt to e-mail his contact

at the drug company. He is my link to Novartis. I speak with my

Pulmonologist on a twice weekly basis. I have a standing appointment

with my Rheumatologist, every two (2) weeks. During the past few

months he has been eliminating possible causes in his ongoing

diagnosis. He seems at a loss and asked that I contact you for

help.

Pursuant to my discussions with these Doctor's and also my knowing my

own body and the research that I have done on the internet, there is

only one cause to this debilitating situation. This is the Xolair.

However, since this is a new drug, nobody seems to want to confront

Novartis about my condition.

My situation is becoming more dire. The pain is not tolerable, even

with pain medication. I am now addicted to these medications and

dread having to go through detox. This however, should be the worse

of my worries. My muscles are becoming atrophied. My ulnar nerves

(I think), in my arms, are in knots and wake me up with severe pain

while I sleep. I have pain deep behind my knees and now I have

noticed that my toes don't touch the ground when I do walk. I am

unable to work. I have limited mobility in my hands, which are my

livelihood. I have become a mess, both physically and emotionally.

I attempt range of motion exercises on my own. I am awaiting for my

heath organization to approve me for Hydro Therapy. I have been

waiting for approval for over three (3) months now. They did approve

me for Occupational Therapy, however, the therapist felt that I was

not a candidate for this therapy. She even spoke to my

Rheumatologist, herself, fearing that she would hurt me more.

I can only lay on my back, with my legs elevated, for approximately

20 hours a day. I feel that there is no hope and that my condition

is becoming more permanent than temporary, due to this drug

interaction. My quality of life has deteriorated as I am unable to

assist in helping my son, let alone myself in the basic necessities

of taking care of myself. I can't get down a flight of stairs,

without help and only leave the confines of my room for Doctor

appointments and once a week on Saturdays.

I have searched thru posts, but have not come up with anything like

my symptoms. Please help!!!

[Guest guest]

Donna,

Thank you for being brave enough to post this information. I don't

know what to tell you, other than you are the first person who's

posted with us who has reported such serious symptoms following

starting Xolair (whether related to Xolair or not).

I find myself wondering if the prednisone you were taking was

masking another condition. Arthritis runs in my family and since I

have stopped taking prednisone, I frequently have arthritis symptoms

in my right hand and right foot/ankle. I assume that the anti-

inflammatory effects of pred kept this at bay.

I agree with that you can only rule everything else this

could be out. I would add that, if it were me, I would contact

National Jewish Research Hospital in Colorado. They have a website

where you can find a 1-800 number for their lung line. They study

allergy, pulmonology and a number of other inflammatory diseases.

I'm fairly confident they did early and later clinical trials of

Xolair. Call them and ask them what it would take to get a consult

on your case with one of your local docs or by having a copy of your

current medical records sent there.

PLease keep us posted on how you are doing. We will all be rooting

for you!

Addy

Co-moderator

>

>

> I am asking for help and don't know where to turn. I am a severe

> asthmatic and take a daily regimen of medicine to control my

asthma.

> Due to my dependence on steroids, over several years and the

negative

> side effects associated with their long term use, my Pulmonologist

> suggested that I try Xolair. After extensively researching this

> newly approved drug, I began taking Xolair in November 2003, one

(1)

> dose; then February 2004, one (1) dose and then May 2004 until

> September 2004, monthly. The one (1) month increments came as my

> insurance companies were in a dispute as to how the cost of this

> medication was to be covered. Immediately I began to feel better

the

> day after my first set of injections. This new found relief

lasted

> until the end of the third week and I looked forward to my next

set

> of injections. I began to notice swelling in my arms in the

> immediate area of the injection site.

>

> I did not experience any other of the primary listed side effects

and

> was able to breathe better and even reduce the amount of steroids

I

> was taking over several months. It always tingled and burned when

> the reconstituted solution was injected. I could have been a

poster

> child for Xolair up to this point. Then on the third consecutive

> month of the injections, the RN injected me with the Xolair and I

> noticed that it did not burn. In addition, the next day I noticed

> there was no relief that I had come to look forward to each

month.

> It was this set of injections that I believe have lead me to the

road

> that I now traverse. This was the first time this RN injected me,

> and was his last. My final two (2) sets of injections were given

by

> another RN.

>

> Then I started to witness the lesser known side effects of

Xolair.

> These are " pain, tiredness, joint pain … leg pain, arm pain. "

These

> are listed on their own web site, under Important Safety

> Information.

> I began to experience mild to moderate pain in my hands, arms,

> forearms and legs. My hands have become disfigured and I am

unable

> to open my right hand and am unable to grip anything more than a

> pillow, with moderate to severe pain. My left hand is getting

worse

> and I fear losing all dexterity in my hands. My hands are

> continually hard and several fingers on my right hand are

permanently

> numb. I have severe pain in my legs from my ankles to my shins,

> thighs and hamstrings. The veins in my arms and legs are

protrusive

> and are severely painful to the touch. My skin is constantly

> swollen and shinny. I am sore to the touch in my extremities.

The

> half-life on Xolair was supposed to be two (2) months.

>

> Since September 2004, my condition has continued to worsen. From

the

> initial problems with my hands, then hands and arms; to my feet,

> legs, hands and arms. I have basically become bedridden except

for

> going to Doctor appointments. I have found an Allergist, a

> Rheumatologist and a Pulmonologist that are still trying to

diagnose

> what is wrong with me. I am on maximum pain medication (Duragesic

> Patch 100 mg; Percocet 2 pills, 6X daily and Vicodin ES when

> necessary) around the clock, that only numbs my mind, even thought

> the severe pain is always there.

>

> I have had numerous blood tests and recently have had two (2) deep

> tissue biopsy's. The first findings came back " a sparse

superficial

> and mid-dermal perivascular infiltrate consists predominantly of

> lymphocytes. " The second findings came back " mild superficial per

> vascular dermatitis. Note: rare plasma cells are notes. No

> definitive evidence of vasculitis is noted. " The slides are now

in

> the hands of my Allergist who has a contact with Novartis. I hope

> that this leads to their involvement in a diagnosis after seven

(7)

> months of a slow hell.

>

> I have seen a Hematologist, with regards to the last biopsy and an

> elevated eosinophil level of 1512 on a blood test taken two (2)

> weeks ago. This level was described to me by my Rheumatologist as

at

> 18%. The subsequent blood test taken at the Hematologist's office

> showed a decrease in the eosinophil level to 9%. My

Rheumatologist

> stated that he hopes that this shows that my allergic reaction is

> beginning to get better. I have my doubts, but continue to have

> hope. Prior to these two (2) blood tests, all my blood tests were

> normal.

>

>

> My allergist asked for me to find a team to work with him in

helping

> to combat my present situation. I finally made an appointment

this

> past week to see him, after not hearing a word from him in over

two

> (2) months. His response to me was that he was happy to see me,

to

> remind him to light a fire for him to attempt to e-mail his

contact

> at the drug company. He is my link to Novartis. I speak with my

> Pulmonologist on a twice weekly basis. I have a standing

appointment

> with my Rheumatologist, every two (2) weeks. During the past few

> months he has been eliminating possible causes in his ongoing

> diagnosis. He seems at a loss and asked that I contact you for

> help.

>

> Pursuant to my discussions with these Doctor's and also my knowing

my

> own body and the research that I have done on the internet, there

is

> only one cause to this debilitating situation. This is the

Xolair.

> However, since this is a new drug, nobody seems to want to

confront

> Novartis about my condition.

>

> My situation is becoming more dire. The pain is not tolerable,

even

> with pain medication. I am now addicted to these medications and

> dread having to go through detox. This however, should be the

worse

> of my worries. My muscles are becoming atrophied. My ulnar

nerves

> (I think), in my arms, are in knots and wake me up with severe

pain

> while I sleep. I have pain deep behind my knees and now I have

> noticed that my toes don't touch the ground when I do walk. I am

> unable to work. I have limited mobility in my hands, which are my

> livelihood. I have become a mess, both physically and emotionally.

>

> I attempt range of motion exercises on my own. I am awaiting for

my

> heath organization to approve me for Hydro Therapy. I have been

> waiting for approval for over three (3) months now. They did

approve

> me for Occupational Therapy, however, the therapist felt that I

was

> not a candidate for this therapy. She even spoke to my

> Rheumatologist, herself, fearing that she would hurt me more.

>

> I can only lay on my back, with my legs elevated, for

approximately

> 20 hours a day. I feel that there is no hope and that my

condition

> is becoming more permanent than temporary, due to this drug

> interaction. My quality of life has deteriorated as I am unable

to

> assist in helping my son, let alone myself in the basic

necessities

> of taking care of myself. I can't get down a flight of stairs,

> without help and only leave the confines of my room for Doctor

> appointments and once a week on Saturdays.

>

> I have searched thru posts, but have not come up with anything

like

> my symptoms. Please help!!!