Re: Xolair side effects

[Guest guest]

Cathie,

Congrats on being approved for Xolair!

Please keep us posted as to how you are doing with it.

Addy

[Guest guest]

That's interesting, . It never would have occurred to me. This isn't

the way my allergies usually manifest, but you never know. I've read that

Xolair is made from hamster ovary.

Best,

Meryl (also in MA)

Meryl, I'm curious.

Have you been tested for allergy to hampster? I'm asking because my doctor

refuses to put anyone on Xolair unless they've tested negative. I'm no

doctor, but some of those side effects (all but the fever) I've had before

from very minor reactions to some of my allergies. My doctor said that the

chemical makeup of Xolair stems from hampsters somehow. Worth asking your

doc about, and no matter what, make sure you tell her you continue to

experience these side effects!

- in MA (who is waiting to hear when I can start my injections!)

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

From: msbehavior@...

Date: 03/04/05 19:57:39

Subject: [ ] Xolair side effects

So, apparently I'm the only one who gets flu-like symptoms from the Xolair.

I've had three shots now and have experienced this symptom each time. The

first time, I felt sick a few days after the shot and I assumed that I must

have

had a bug. I had a severe headache, sinus pain, nausea, muscle and joint

pain,

intense fatigue, etc.. The second time, it came on five days after the

injection (just like it did the first time) and I began to wonder if the

Xolair was

the culprit. The symptoms seem to remain pretty intense for about a week and

then to subside somewhat, but it's pretty miserable. I had my third set of

injuections two days ago, and this time it's coming on much more quickly.

Same

thing: headache, body aches, nausea, slightly elevated temperature (99.8,

which

is high for me; I usually run low when I don't have a fever).

It's very discouraging. I was really hopeful about this. I keep hoping that

we can figure out that there's really something else causing the symptoms,

not

the Xolair. My doctor prescribed some blood tests today, so maybe that will

reveal something. But she said that if it continues to be like this, she

wants

to either halve the dose or take me off of it. Sad news for me.

Meryl

[Guest guest]

oh meryl - i'm so sorry the xolair seems to be causing you such problems. with

some luck, the dr will be able to figure it out and you'll be able to continue

with the xolair. you might want to contact novartis or genetech and report your

symptoms.

i hope it works out for you!

feel better

heather

msbehavior@... wrote:

So, apparently I'm the only one who gets flu-like symptoms from the Xolair.

I've had three shots now and have experienced this symptom each time. The

first time, I felt sick a few days after the shot and I assumed that I must have

had a bug. I had a severe headache, sinus pain, nausea, muscle and joint pain,

intense fatigue, etc.. The second time, it came on five days after the

injection (just like it did the first time) and I began to wonder if the Xolair

was

the culprit. The symptoms seem to remain pretty intense for about a week and

then to subside somewhat, but it's pretty miserable. I had my third set of

injuections two days ago, and this time it's coming on much more quickly. Same

thing: headache, body aches, nausea, slightly elevated temperature (99.8, which

is high for me; I usually run low when I don't have a fever).

It's very discouraging. I was really hopeful about this. I keep hoping that

we can figure out that there's really something else causing the symptoms, not

the Xolair. My doctor prescribed some blood tests today, so maybe that will

reveal something. But she said that if it continues to be like this, she wants

to either halve the dose or take me off of it. Sad news for me.

Meryl

[Guest guest]

Meryl, I'm curious.

Have you been tested for allergy to hampster? I'm asking because my doctor

refuses to put anyone on Xolair unless they've tested negative. I'm no

doctor, but some of those side effects (all but the fever) I've had before

from very minor reactions to some of my allergies. My doctor said that the

chemical makeup of Xolair stems from hampsters somehow. Worth asking your

doc about, and no matter what, make sure you tell her you continue to

experience these side effects!

- in MA (who is waiting to hear when I can start my injections!)

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

From: msbehavior@...

Date: 03/04/05 19:57:39

Subject: [ ] Xolair side effects

So, apparently I'm the only one who gets flu-like symptoms from the Xolair.

I've had three shots now and have experienced this symptom each time. The

first time, I felt sick a few days after the shot and I assumed that I must

have

had a bug. I had a severe headache, sinus pain, nausea, muscle and joint

pain,

intense fatigue, etc.. The second time, it came on five days after the

injection (just like it did the first time) and I began to wonder if the

Xolair was

the culprit. The symptoms seem to remain pretty intense for about a week and

then to subside somewhat, but it's pretty miserable. I had my third set of

injuections two days ago, and this time it's coming on much more quickly.

Same

thing: headache, body aches, nausea, slightly elevated temperature (99.8,

which

is high for me; I usually run low when I don't have a fever).

It's very discouraging. I was really hopeful about this. I keep hoping that

we can figure out that there's really something else causing the symptoms,

not

the Xolair. My doctor prescribed some blood tests today, so maybe that will

reveal something. But she said that if it continues to be like this, she

wants

to either halve the dose or take me off of it. Sad news for me.

Meryl

[Guest guest]

Xolair is maded in a Chinese Hamster Ovary Cell, it is instilled with

Gentamycin, the xolair is grown, then they " wash " it so that no hamster protein

or gentamycin remains. I am also allergic to all " furry " or feathered animals.

I have no problem, and none of the patients I have spoken to have had a problem.

It is a good thing your MD is so concerned, but the Genentech clinical trials

ans perscribing information say no protein of the hamster remains.

Hope that helped.

Pat

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

Celebrate 's 10th Birthday!

Netrospective: 100 Moments of the Web

[Guest guest]

Thanks Pat, it's always useful to get more information, and although none of

the hamster parts remain, it makes me feel even better about the fantastic

doc I have. I reassures me that he's very thorough and doesn't take ANY

chances with my health! Thanks so much for sharing what you know!

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

From: MommaA

Date: 03/05/05 03:27:36

Subject: Re: [ ] Xolair side effects

Xolair is maded in a Chinese Hamster Ovary Cell, it is instilled with

Gentamycin, the xolair is grown, then they " wash " it so that no hamster

protein or gentamycin remains. I am also allergic to all " furry " or

feathered animals. I have no problem, and none of the patients I have

spoken to have had a problem. It is a good thing your MD is so concerned,

but the Genentech clinical trials ans perscribing information say no protein

of the hamster remains.

Hope that helped.

Pat

[Guest guest]

There must not be any hampster protien remaining, because I am

allergic to meat protiens. And I have no problem.

--

- In , MommaA <mommaa@y...> wrote:

>

> Xolair is maded in a Chinese Hamster Ovary Cell, it is instilled

with Gentamycin, the xolair is grown, then they " wash " it so that no

hamster protein or gentamycin remains. I am also allergic to

all " furry " or feathered animals. I have no problem, and none of

the patients I have spoken to have had a problem. It is a good

thing your MD is so concerned, but the Genentech clinical trials ans

perscribing information say no protein of the hamster remains.

>

> Hope that helped.

>

> Pat

>

>

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

> Celebrate 's 10th Birthday!

> Netrospective: 100 Moments of the Web

>

>

[Guest guest]

Maureen:

Thanks very much for responding. I've heard privately from one other person

who had similar problems.

I'm still taking Xolair and doing a bit better; after my third shot, I had

two days of debilitating flu-like symptoms instead of six or eight days like

that. I just had my fourth shot a couple of days ago, so it's too soon to tell

what will happen. It usually comes on a few days later.

My doctor has said that if the side effects remain a problem, she'd like to

see me go down to every month, instead of every two weeks. I hope that doesn't

have to happen because my IGE is very high (over 1000) and I worry that if I

got the shots less frequently, my potential benefits would diminish.

The nurse from Novafactor told me that sinusitis, headache, and dizziness are

common, but usually diminish over time. She didn't say anything about nausea,

but I have that one too.

Have your side effects remained the same over the year you've been taking it,

or have they diminished over time?

Best,

Meryl

Meryl:

You are not the only one having these side effects. I've been on

xolair for over a year now and while my sinuses and lungs have shown

dramatic improvement I am exhausted most of the time and my joints

are killing me and I am having more headaches and problems with

nausea. (The fever is also an issue I have had on and off - 99.6

when my regular temp is 97.2). I'm not sure if this happens more

severelly after my shot although I will certainly start tracking

this. I was on MedLinePlus today and found that they list

tiredness, joint pain and dizziness as a side effect; this is the

first place I have seen this.

How are you? Are you still on xolair?

Maureen

>

> So, apparently I'm the only one who gets flu-like symptoms from

the Xolair.

>

>

> I've had three shots now and have experienced this symptom each

time. The

> first time, I felt sick a few days after the shot and I assumed

that I must have

> had a bug. I had a severe headache, sinus pain, nausea, muscle and

joint pain,

> intense fatigue, etc.. The second time, it came on five days after

the

> injection (just like it did the first time) and I began to wonder

if the Xolair was

> the culprit. The symptoms seem to remain pretty intense for about

a week and

> then to subside somewhat, but it's pretty miserable. I had my

third set of

> injuections two days ago, and this time it's coming on much more

quickly. Same

> thing: headache, body aches, nausea, slightly elevated temperature

(99.8, which

> is high for me; I usually run low when I don't have a fever).

>

> It's very discouraging. I was really hopeful about this. I keep

hoping that

> we can figure out that there's really something else causing the

symptoms, not

> the Xolair. My doctor prescribed some blood tests today, so maybe

that will

> reveal something. But she said that if it continues to be like

this, she wants

> to either halve the dose or take me off of it. Sad news for me.

>

> Meryl

>

>

>

[Guest guest]

Meryl:

You are not the only one having these side effects. I've been on

xolair for over a year now and while my sinuses and lungs have shown

dramatic improvement I am exhausted most of the time and my joints

are killing me and I am having more headaches and problems with

nausea. (The fever is also an issue I have had on and off - 99.6

when my regular temp is 97.2). I'm not sure if this happens more

severelly after my shot although I will certainly start tracking

this. I was on MedLinePlus today and found that they list

tiredness, joint pain and dizziness as a side effect; this is the

first place I have seen this.

How are you? Are you still on xolair?

Maureen

>

> So, apparently I'm the only one who gets flu-like symptoms from

the Xolair.

>

>

> I've had three shots now and have experienced this symptom each

time. The

> first time, I felt sick a few days after the shot and I assumed

that I must have

> had a bug. I had a severe headache, sinus pain, nausea, muscle and

joint pain,

> intense fatigue, etc.. The second time, it came on five days after

the

> injection (just like it did the first time) and I began to wonder

if the Xolair was

> the culprit. The symptoms seem to remain pretty intense for about

a week and

> then to subside somewhat, but it's pretty miserable. I had my

third set of

> injuections two days ago, and this time it's coming on much more

quickly. Same

> thing: headache, body aches, nausea, slightly elevated temperature

(99.8, which

> is high for me; I usually run low when I don't have a fever).

>

> It's very discouraging. I was really hopeful about this. I keep

hoping that

> we can figure out that there's really something else causing the

symptoms, not

> the Xolair. My doctor prescribed some blood tests today, so maybe

that will

> reveal something. But she said that if it continues to be like

this, she wants

> to either halve the dose or take me off of it. Sad news for me.

>

> Meryl

>

>

>

[Guest guest]

I had incredible fatigue from month 3 until about month 8. HOwever,

My doctor and I were sure that it was due to my adrenal glands being

slow to come back from being suppressed by taking so much pred for

so long.

If your doctor decides every 2 weeks is to much, you might try every

3 weeks. That's what I've been doing while I'm trying to get new

health insurance and it's been working well.

Addy

[Guest guest]

hedy

There is no mechanism in the Xolair to make you gain weight. Please speak to

the allergist/pulmonologist before you quit the Xolair. Have them run thyroid

function tests as well as rheumatoid arthritis tests etc... Your allergist

probably started out as in internal medicine specialist, he/she would have the

best opinion. Flu like symptoms seem to be common. They can be combatted by

taking Tylenol/Aleve or Motrin if you have no contraindication to them, before

the shots and making sure your body is as hydrated as possible (half your body

weight in ounces of water daily). For example, if you weigh 200 pounds,

drinking 100 ounces of water daily through the first 3 months of treatment.

That seems to help greatly. After the 3rd month the flu like symptoms seen to

abate.

Hope you can stay on treatment, as you can see by almost all of the people here,

it took a while, but they feel better, are more active, and have reduced their

other 'respiratory meds', especially prednisone.

Pat

__________________________________________________

[Guest guest]

In regards to the thyroid levels..I do have hypoactive thyroid and

have been on meds for that for much longer than the asthma meds,

along with asthma, allergies, thyroid, I also have depression (used

to be able to say mild..not so much anymore), ADHD, and fibromyalgia.

So the body ache part really scares me. Seems as if i treat one thing

and mess up another area. It is a big balancing act, one that asthma

is winning at the moment. And to add to the depression part just this

month we (my sisters and my father) had to have my mother placed in a

rehabilition home for dementia as she became very violent and

combative. But she isn't so bad that she isn't aware that she wants

to be at home. So that is a continual drain on the energy levels also.

Ok I think that is enough complaining now.

Take care and good luck everyone.

> Hi. I had very severe side effects for the first couple of months,

including

> headaches, flu-like body aches, severe fatigue. I was barely able

to do

> anything. Walking downstairs and then back upstairs just about did

me in.

>

> I hoped the side effects would subside, and continued to take

Xolair.

> Eventually, they did subside. By the end of the third month, I was

not having any

> extreme side effects at all.

>

> I did not gain weight from the Xolair.

>

> Have you had your thyroid checked?

>

> Best,

> Meryl

> Hello! I have really severe asthma and have been on multiple

> medications over the past 25 years. After learning that my IgE

> level was over 800, my doctor wanted me to begin taking Xolair

> injections...so I have been receiving three injections (375 mg)

> every other week. So far I've taken four injections...so

> essentially I've been on it for about two months.

>

> Over the past two months, I have had extreme muscle pain in my

lower

> legs, knees, lower back, and upper back (around the neck). After

> going to my Family Doctor who ran a battery of blood tests to

> determine if it was some sort of muscle disease...she believes that

> it is the Xolair injection. In addition to that, I have gained

> about 20 pounds over the past two months and I'm a really health

> conscious eater and have nothing to attribute to that other than

the

> Xolair.

>

> Has anyone else had these symptoms, or something similar? I've

been

> advised to stop taking the injections by my Family Doctor, much to

> the dismay of my Asthma Doctor. I just can't function in so much

> pain.

>

>

>

[Guest guest]

My wife also had to stop the Xolair injections due to severe muscle pain in her

legs and arms. It got to the point that she needed a cane to get around. Her

doctors couldn't definitively attribute the muscle pain and weakness to her

Xolair injections, but after being off the medication for several months now,

the pain is subsiding and she is regaining her strength.

Its a balancing act, trying to get the right medications in the right dosage to

help and not make her health worse. She was put on Lipitor several years ago for

high cholesterol, and that medication had the same effect.

I can't help but wonder, in this age of modern medicine, why some people can

literally be cured from a disease by taking a pill, and others only seem to get

worse.

Ed

[Guest guest]

Donna,

I'm so sorry to hear of your continuing distress and hope you find the help

you need with the scleroderma. Even though your experience is a rare one,

doctors and patients need to know about potential positive AND negative

experiences

with Xolair. It's really important that you share this with others, first for

your own potential benefit, and second because it may help someone else.

Doug, I think the reported positive AND negative experiences speak for

themselves. I'm glad that you did not choose to censor someone's negative

experience. After all, we're all here to learn.

Thanks,

Meryl

[Guest guest]

Post disclaimer by the moderator:

This is the first time I have heard of anyone having this kind of reaction from

Xolair. Personally, I have been on it for over 2 years now and NEVER had

anything like this happen. Like most of you in this group, I have had great

succcess with this medication without any problems whatsoever. Personally, I am

is Prednisone free and able to breathe like a normal person.

This being said, as the group creator and moderator, I would like our you to

know Donna's story.

Thank you,

Doug

______________________________________________________________________

Hedy,

My name is Donna. I have been hospitalized due to having Xolair injected into my

body and am looking for people who have either been mis-diagnosed or are

suffering from serious side-effects from Xolair. My last set of injections were

in September 2004 and my body is continuing to deteriate. I am waiting to hear

back from Genentech concerning an ELISA assay that was Fed Ex'd to them to

difinitively determine that Xolair antibodies are present. I have had three (3)

deep tissue biopsies that all show that I presently have man-made plasma cells

in my body. I realize that the Xolair users group is 99% positive, but I know

that there have to other people out there who have encountered serious

side-effects from Xolair. As previously mentioned, I presently have man-made

plasma cells in my body that have brought on an auto-immune disease known as

scleroderma. I have filed with the FDA concerning my body's reaction to Xolair.

If you know of others or would like to communicate, compare notes or

talk to somebody who is going through a similar situation, please don't

hesitate to e-mail me @ Luneytunei@... I am in severe pain; my hands are

disfigured; I am bed-ridden and have been unable to work since January 2005; my

joints are consistently swollen; my skin is thickened and unfortunatley I have

the worse case of scleroderma. I am presently on Cytoxin, a chemotherapy drug -

that is unproven to help in my situation, but my team of Rheumatologists feel

that this is my best bet in the hopes of retarding the advancement of this

disease in my system. Sincerely, Donna Korsiak Long Island, NY

hedycu <hedy.cummings@...> wrote:

Hello! I have really severe asthma and have been on multiple

medications over the past 25 years. After learning that my IgE

level was over 800, my doctor wanted me to begin taking Xolair

injections...so I have been receiving three injections (375 mg)

every other week. So far I've taken four injections...so

essentially I've been on it for about two months.

Over the past two months, I have had extreme muscle pain in my lower

legs, knees, lower back, and upper back (around the neck). After

going to my Family Doctor who ran a battery of blood tests to

determine if it was some sort of muscle disease...she believes that

it is the Xolair injection. In addition to that, I have gained

about 20 pounds over the past two months and I'm a really health

conscious eater and have nothing to attribute to that other than the

Xolair.

Has anyone else had these symptoms, or something similar? I've been

advised to stop taking the injections by my Family Doctor, much to

the dismay of my Asthma Doctor. I just can't function in so much

pain.

[Guest guest]

First of all Doug, thank you for the note before Donnas letter was printed.

Second: Donna, you may have had Scleroderma for years and had minor affects

from it and blew them off. It is something we all do and as women, we seem to

do it more than men. We just have too many things to do as women, take care of

children, husband, house, dinner, work, soccer practice etc... now it is being

diagnosed. I have more than a thousand patients on Xolair with no negative

affect at all. That doesn't mean you don't have any side affects from Xolair.

But your last shot being so long ago, it seems unlikely it is causing problems

now. Anyone can certainly develop anti-bodies to any medication and any

bacteria, fungal, or viral illness. The anti-bodies we make to things that

would make us ill, keep us from getting ill in the future. Anti-bodies to

medication make us " allergic " to the medication, and it should not be given

again. I hope that you do well and that your scleroderma is treated agressively

so you feel better. Cytoxan is the first line treatment and the

right choice for your doctor to use. Many 'anti-cancer' drugs are used for

more than just cancer because of their mechanism of action so don't worry about

receiving it. Methotrexate is another and many Asthmatics are put on that one.

Sincerely,Pat

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

Start your day with - make it your home page

[Guest guest]

Like Pat I am doubtful that Xolair would be involved in your

illness, although each of us tolerates medicine differently. I have

been trying to find more information myself regarding inflammation

and inflammatory diseases. I am the first severe asthmatic in my

family, but my mother's family has a history of arthritis and I am

wondering if my genes aren't just overly predisposed to inflammation

and asthma is just one of the outcomes of that. I am wondering if

it is possible that you had another inflammatory illness that was

building over time and which may have manefested early in your lungs

causing asthma.

Thank you for sharing your story with us. Please let us know what

response you get from Genentech.

Addy

Moderator

> Hello! I have really severe asthma and have been on multiple

> medications over the past 25 years. After learning that my IgE

> level was over 800, my doctor wanted me to begin taking Xolair

> injections...so I have been receiving three injections (375 mg)

> every other week. So far I've taken four injections...so

> essentially I've been on it for about two months.

>

> Over the past two months, I have had extreme muscle pain in my

lower

> legs, knees, lower back, and upper back (around the neck). After

> going to my Family Doctor who ran a battery of blood tests to

> determine if it was some sort of muscle disease...she believes

that

> it is the Xolair injection. In addition to that, I have gained

> about 20 pounds over the past two months and I'm a really health

> conscious eater and have nothing to attribute to that other than

the

> Xolair.

>

> Has anyone else had these symptoms, or something similar? I've

been

> advised to stop taking the injections by my Family Doctor, much to

> the dismay of my Asthma Doctor. I just can't function in so much

> pain.

[Guest guest]

I have been missing in action for a while, but thought I would chime

in on this subject.

Auto-immune and inflammatory diseases are very complicated and it can

be really tempting to link events together as cause and effect (new

shot must have caused new disease). One thing we ALL know is that

prednisone, large oral doses in particular, can affect your body in

many different ways, good and bad.

Prednisone is famous for masking, hiding or making it difficult to

diagnose any kind of auto-immune disease. Since vitually all of us who

are successfully using Xolair are also decreasing or stopping our pred

doses, who knows what might show up.

Case in point: I was a Xolair miracle child and responded almost

immediately...at the time I started Xolair I was taking between 60 and

80mg of pred a day; with xolair I was able to drop that dose...started

the shots in September and by January I was down to 20mg a day...we

dropped slowly because I had been on the high doses of pred for years.

I started complaining about muscle and joint pain, tiredness and

fatigue,etc., none of which seemed too awful...after all I was

breathing!<vbg>. Within a month however my wrists became very weak and

swollen and I developed a whole hos of other symptoms that just

screamed auto-immune disease...Oh wow...do we stop the Xolair and go

back to life threatening asthma?

Thanks to clever and aggressive doctors, we know the answer...20 YEARS

of high dose prednisone almost completely masked the presence of an

aggressive erosive arthritis...so I did have a Xolair side effect, in

a way...it lowered my pred dose enough that my underlying rheumatoid

arthritis finally made itself known. Of course, hind sight is 20/20

and many of the " small " complaints I had in the past are now

re-labeled as early signs of the arthritis.

I am having difficulty getting into remission with the arthritis, and

no one seems to have any patients on *both* Xolair and one of the

arthritis biologics, so I am in an interesting position.

I hope that everyone takes it easy with themselves. Remember, things

that are related in time may not be related in your body's workings,

or like me, they may be related in a way you did not expect!

Pandora

[Guest guest]

Pandora,

20 years of pred!!! Did u get off completely? If you

can do it, I can do it! (I am only approaching year

4). Alot of the withdrawl from pred symptoms I have do

mimic arthritis. As I drop my dose, I hurt all over

but apparently this is " normal " . Thanks for sharing

your story....

ps Are you on any biologics for RA too?? Keep us

posted!

__________________________________________________________

Find your next car at http://autos..ca

[Guest guest]

Pandora

I have a few patients on Xolair and Raptiva, Xolair & Enbrel, and Xolair &

Methotrexate. Don't have any on Xolair & Remicade or Humira. They are doing

well on both. BUT no studies have been done. You and your physician must talk

frankly and see if you want to start another biologic for the Arthritis.

Pat

__________________________________________________

[Guest guest]

Pandora - thanks for shraring! Very wise words....

My case is not nearly as bad as yours, but shortly after I stopped

pred, I started to have arthritis symptoms in my right hand and my

right foot. It runs in the family, and at only 37 years old, I'm

not too happy about it starting so early. But, I'm happy to be off

the pred!

I also bruise so easily now.

Take care, all,

Addy

--- In , " keemaka42 " <keemaka42@y...>

wrote:

> I have been missing in action for a while, but thought I would

chime

> in on this subject.

>

> Auto-immune and inflammatory diseases are very complicated and it

can

> be really tempting to link events together as cause and effect (new

> shot must have caused new disease). One thing we ALL know is that

> prednisone, large oral doses in particular, can affect your body in

> many different ways, good and bad.

>

> Prednisone is famous for masking, hiding or making it difficult to

> diagnose any kind of auto-immune disease. Since vitually all of us

who

> are successfully using Xolair are also decreasing or stopping our

pred

> doses, who knows what might show up.

>

> Case in point: I was a Xolair miracle child and responded almost

> immediately...at the time I started Xolair I was taking between 60

and

> 80mg of pred a day; with xolair I was able to drop that

dose...started

> the shots in September and by January I was down to 20mg a day...we

> dropped slowly because I had been on the high doses of pred for

years.

>

> I started complaining about muscle and joint pain, tiredness and

> fatigue,etc., none of which seemed too awful...after all I was

> breathing!<vbg>. Within a month however my wrists became very weak

and

> swollen and I developed a whole hos of other symptoms that just

> screamed auto-immune disease...Oh wow...do we stop the Xolair and

go

> back to life threatening asthma?

>

> Thanks to clever and aggressive doctors, we know the answer...20

YEARS

> of high dose prednisone almost completely masked the presence of an

> aggressive erosive arthritis...so I did have a Xolair side effect,

in

> a way...it lowered my pred dose enough that my underlying

rheumatoid

> arthritis finally made itself known. Of course, hind sight is 20/20

> and many of the " small " complaints I had in the past are now

> re-labeled as early signs of the arthritis.

>

> I am having difficulty getting into remission with the arthritis,

and

> no one seems to have any patients on *both* Xolair and one of the

> arthritis biologics, so I am in an interesting position.

>

> I hope that everyone takes it easy with themselves. Remember,

things

> that are related in time may not be related in your body's

workings,

> or like me, they may be related in a way you did not expect!

>

> Pandora

[Guest guest]

> Pandora,

>

> 20 years of pred!!! Did u get off completely?

'Fraid not, but I am down to 10, which is awfully close to the amount

your body would produce normally...the big thing is that I also have

almost normal lung function at that dose of pred. You should know

that I still also take all my asthma meds (advair, flovent,

atrovent)...the huge difference is that before Xolair I was at about

one third normal lung capacity and function; no one knows why I wasn't

bed-ridden. Anyway the xolair has been great and for me a huge change

for the better. I actually am continuing to improve and will start to

cut back the pred even more, but now it is a very slow process.

Pandora

[Guest guest]

> I have a few patients on Xolair and Raptiva, Xolair & Enbrel, and

Xolair & Methotrexate....

I am actually already on the MTX and Remicade and I was just looking

for company<vbg>. I have only had a few doses of the Remicade so we

shall have to see. Fortunately I am in good hands here in Houston.

Pandora

[Guest guest]

Well, I used to blame my " hurt all over " on the pred dose changes

also. Apparently I am tough and my aches were on the severe side (who

knew?).

I do sympathize...I have 5 surviving sibs, all with asthma, 2 of those

sibs have anti-inflammatory problems (psoriasis). There is NEVER

enough space on those silly patient history forms, is there?

I can say for certain that keeping your hands warm and stretching them

out helps quite a bit...hubby is very surprised at how much I enjoy

doing the dishes, except it seems to take me forever because many

times, I just soak<vbg>.

Take care,

Pandora

[Guest guest]

Hadn't thought about soaking in warm water...

There must be some kind of inflammatory gene or something.

Thanks for sharing...glad you are making progress in tapering down

the pred. It's always a good thing to go slow like that!

Addy

--- In , " keemaka42 " <keemaka42@y...>

wrote:

> Well, I used to blame my " hurt all over " on the pred dose changes

> also. Apparently I am tough and my aches were on the severe side

(who

> knew?).

>

> I do sympathize...I have 5 surviving sibs, all with asthma, 2 of

those

> sibs have anti-inflammatory problems (psoriasis). There is NEVER

> enough space on those silly patient history forms, is there?

>

> I can say for certain that keeping your hands warm and stretching

them

> out helps quite a bit...hubby is very surprised at how much I enjoy

> doing the dishes, except it seems to take me forever because many

> times, I just soak<vbg>.

>

> Take care,

>

> Pandora