Re: Xolair, Arthritis, Body Pain AND surprise!

July 1, 2007

You have to remember that when they say that infection showed up in

18-23% of the folks taking Xolair in clinical trials, that this does

not mean Xolair caused their infections. It means they developed an

infection concurrent to taking Xolair. Since those of us who take

Xolair are PRONE to infection anyway, it makes it very hard to

determine if Xolair is a cause of infection.

There are MANY ways to get infections, respiratory or otherwise.

Airborne germs, touching surfaces with infectious germs on them,

untreated dental issues, mishaps at the dentist, cuts, etc.

I know any number of people who have suffered from very minor

infections that didn't show up for a long time and which caused some

sort of unusual adverse effect. I also know three people who tested

negative for mono on more than one occasion before they finally got a

positive test result who were VERY ill in a number of ways due to the

underlying mono virus.

The single most effective way to prevent infection is still very good

handwashing.

Take good care,

Addy

Group co-owner

>

> This ties in with my earlier post and other posters' discussion about

> Xolair and possible connection with increased body aches and joint

> pain. I definitely felt my arthritis and bones had very gradually

> worsened while on Xolair and it was NOT from steroids except the

> possibility of Advair. Someone mentioned something about their

> experience being more like an inflammed nerve which could very well

> be what I've experienced and/or muscle pain. I also thought it got

> worse after jumping to 375 mgs of Xolair (from 300). One person I

> believe had to go off from it because the reaction had become so

> strong that it was considered an adverse event.

>

> On about Tues. or so of this week I started to feel bad like I was

> developing yet ANOTHER upper respiratory infection. I called the doc

> for medication but another doc was on call and just gave me a low

> dose of antibiotic for 5 days. In digging through my small

> collection of meds I take infrequently I found Avelox which is in the

> family of antibiotics to which I respond very well. I decided to go

> ahead and take it - 400 mgs / day for 10 days.

>

> Weird !!!! I've had 3 days of it so far and noticed after the first

> day that there was a teensie weensie reduction of pain - more so in

> my neck (that was really bothoring me) and less in my hips and back.

> After the second dose I could turn over in bed with less discomfort.

> Now then, Avelox has NOT wiped out my arthritis or aches or pains and

> I still have several days to go, but, am wondering - no, I tend to

> believe that the intense edge to the pain was perhaps some sort of

> infection. Infection (upper respiratory, I believe) was something

> like 18 - 23% in Xolair trials. It seems like it might be possible

> that infection could turn up elsewhere too.

>

> I just had my second set of shots Fri. eve. That makes 7 series of

> shots so far. (375 mgs. every 2 weeks now) At best I thought I

> noticed a slight lessening in asthma symptoms at night for a couple

> nights. At least I went w/o Advair for 2 nights before having to go

> back on and then developing this bug (my hubby has it too).

>

> I'm wondering if anyone else has tried antibiotic treatment while

> experiencing what was assumed to be nerve pain or arthritis? I

> really took it for the upper respiratory infection - not arthrtis -

> so the benefit was " accidental " but maybe this is something that does

> occur and perhaps others could benefit. Then, too, sometimes I have

> my very own set of reactions!

>

July 2, 2007

Of course there are many ways to get infection! And there are many

drugs that lower immunity. To what degree Xolair lowers immunity

(if, indeed, any) is NOT exactly my point.

My point is that I found something HELPFUL for what was supposed to

be arthritis/neuralgia/whatever. It was very possible that my doc

would eventually take me off Xolair due to the increase in body pain;

I found something quite by accident that reduced the body pain. It

was an antibiotic. It ocurred to me that if it helped me by taking

the edge off the body pain then others might find it helpful too.

And, if by any wild chance that allowed them to CONTINUE the BENEFIT

they EXPERIENCED from XOLAIR, THEN SO MUCH THE BETTER.

>

> You have to remember that when they say that infection showed up in

> 18-23% of the folks taking Xolair in clinical trials, that this does

> not mean Xolair caused their infections. It means they developed an

> infection concurrent to taking Xolair. Since those of us who take

> Xolair are PRONE to infection anyway, it makes it very hard to

> determine if Xolair is a cause of infection.

>

> There are MANY ways to get infections, respiratory or otherwise.

> Airborne germs, touching surfaces with infectious germs on them,

> untreated dental issues, mishaps at the dentist, cuts, etc.

>

> I know any number of people who have suffered from very minor

> infections that didn't show up for a long time and which caused some

> sort of unusual adverse effect. I also know three people who tested

> negative for mono on more than one occasion before they finally got

a

> positive test result who were VERY ill in a number of ways due to

the

> underlying mono virus.

>

> The single most effective way to prevent infection is still very

good

> handwashing.

>

> Take good care,

>

> Addy

> Group co-owner

>

> --- In , " instdesgn1 " <instdesgn1@>

wrote:

> >

> > This ties in with my earlier post and other posters' discussion

about

> > Xolair and possible connection with increased body aches and

joint

> > pain. I definitely felt my arthritis and bones had very

gradually

> > worsened while on Xolair and it was NOT from steroids except the

> > possibility of Advair. Someone mentioned something about their

> > experience being more like an inflammed nerve which could very

well

> > be what I've experienced and/or muscle pain. I also thought it

got

> > worse after jumping to 375 mgs of Xolair (from 300). One person

I

> > believe had to go off from it because the reaction had become so

> > strong that it was considered an adverse event.

> >

> > On about Tues. or so of this week I started to feel bad like I

was

> > developing yet ANOTHER upper respiratory infection. I called the

doc

> > for medication but another doc was on call and just gave me a low

> > dose of antibiotic for 5 days. In digging through my small

> > collection of meds I take infrequently I found Avelox which is in

the

> > family of antibiotics to which I respond very well. I decided to

go

> > ahead and take it - 400 mgs / day for 10 days.

> >

> > Weird !!!! I've had 3 days of it so far and noticed after the

first

> > day that there was a teensie weensie reduction of pain - more so

in

> > my neck (that was really bothoring me) and less in my hips and

back.

> > After the second dose I could turn over in bed with less

discomfort.

> > Now then, Avelox has NOT wiped out my arthritis or aches or pains

and

> > I still have several days to go, but, am wondering - no, I tend

to

> > believe that the intense edge to the pain was perhaps some sort

of

> > infection. Infection (upper respiratory, I believe) was

something

> > like 18 - 23% in Xolair trials. It seems like it might be

possible

> > that infection could turn up elsewhere too.

> >

> > I just had my second set of shots Fri. eve. That makes 7 series

of

> > shots so far. (375 mgs. every 2 weeks now) At best I thought I

> > noticed a slight lessening in asthma symptoms at night for a

couple

> > nights. At least I went w/o Advair for 2 nights before having to

go

> > back on and then developing this bug (my hubby has it too).

> >

> > I'm wondering if anyone else has tried antibiotic treatment while

> > experiencing what was assumed to be nerve pain or arthritis? I

> > really took it for the upper respiratory infection - not

arthrtis -

> > so the benefit was " accidental " but maybe this is something that

does

> > occur and perhaps others could benefit. Then, too, sometimes I

have

> > my very own set of reactions!

> >

>

July 3, 2007

I have something neat to share. While I was waiting for my xolair shot I began

talking to two women who were in the waiting room with me. Both were on xolair.

One woman began sharing about what her life was like for the last 12 years--it

would match many of your stories--lots of asthma meds, trips to the ER, almost

house bound because she had been put on oxygen.....no life. And she had had to

have some sort of procedure because of the side effects of pred. (I couldn't

understand exactly what she said.) She could not go anywhere, work in her yard

or do any of the things she enjoyed. In April her doctor set her up to be

tested and evaluated for xolair. She had her first shot in June, 2006 (forgot

to ask her how much she gets and how often). She is still on some of the

regular asthma meds, but her doctor recently took her off of theophyline, she is

no longer on oxygen, and her comment to me was the same I have heard on this

forum from many of you: " I finally have my

life back, thanks to xolair! "

My story is not nearly so dramatic as many of yours, but since I can now walk

outside again, do yard work again, and go to the park with my little

granddaughter because I am on xolair, it certainly has been worth it to me. And

I hope to be able soon to slowly be weaned off of some of my medication,

although I know I will still have to use some asthma med the rest of my life,

and I will have to live with the lung damage from the years of the meds and the

toll that asthma takes on the lungs.

So I had a good day. By the way, my xolair nurse again made sure she gave me

the shot very slowly--no hurting at all--and it has been almost 12 hours since I

got my shot. There is no red place, no knot, no soreness--can't even tell where

I got the shot! JoAnn--you are a great nurse!

Oh--it has been very humid, rainy and of course the mold count goes up after

the rain, when the sun comes out! I have had very few breathing problems!

That's progress!

We are supposed to be inundated again tomorrow and Wednesday--90% chance of

rain both days!

Hope all have a safe, easy-breathing great July 4th holiday.

Adah

pyle456 <coachmac@...> wrote: