Re: Dosage increase -- -

[Guest guest]

,

I was on 150 for 1 year and after the 1st 6 months I felt as though I was

beginning to see some benefit. At that time it seemed Xolair would work every

other month, in an exact pattern. After the 1st year I decided to stop taking

it because I felt it wasn't working. That's when my doctor told me my IgE was

only 44 and since it was so low it was possible I wouldn't benefit from Xolair.

Once I stopped taking it I got very sick. When I hopped into bed I could feel

my lung getting tight and the mucus secretions were just incredible -- worse

than I've ever experienced. At that time I was thinking, " Great, I'm addicted

to this expensive drug that isn't going to help me. " I went back on the 150 and

the sickness went away. Unfortunately, I was still in the pattern of having it

work periodically. I went to my doc after 18 months and said the magic words,

which was, " it only seems to work for 2 weeks. " He gave me one of those looks

like, " Really? " The reason....he had

another patient who said the same thing so, considering it was such a new drug,

he suspected it wasn't lasting as long as it should. He called Genentech and

they recommended doing a 75mg booster 1/2 way through the month. My doc sent

the prescription to my pharmacy and they never even questioned it. Ever since

then, it's been smooth sailing. Xolair worked immediately and all of the time!

I think you need to give it more time since you're pretty new into the therapy

but if you don't show any improvement shortly you can run my case by your doc.

You may run into some resistance because doctors are very reluctant to change

the dose on a med that is highly standardized. If your doc calls Genentech and

they give you the same recommendation that I got then you may have some luck but

then you have insurance issues..... If my insurance company cancelled my

approval today I'd go and get a 2nd job to cover the cost of this medication --

it's changed my life that much!

Good Luck!

<justinlouisville@...> wrote:

Hi ,

I'm intrigued by what you said about 150 mg of Xolair not working

even though your IgE was only 44. My most recent IgE was 91 and I'm

on 150 mg, but so far I haven't seen any results. I haven't been on

Xolair that long (I'm due for my 4th shot tomorrow), so I'm being as

patient as possible, but I'm starting to think about requesting a

dosage increase from my doctor. In 2004, my IgE was 188, so at least

I have the lab work to back me up in getting an additional vial.

Would you mind sharing more details about your situation? For

example, how long did you stay at 150 mg before increasing the

dosage? Did you see any effect when on 150 mg alone? How soon after

adding the 75 mg dose did you start seeing improvement? Did your

doctor have a hard time getting approval to increase the dosage?

Thanks!

My IgE count is fairly low at 44 but oddly enough, 150 didn't do the

job. I currently take 150 and 75 alternating every two weeks and it

has made a world of difference.

>

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[Guest guest]

Hi ,

Thanks so much for sharing your experience with Xolair. I'm so glad you

and your doctor were able to find a dosage regimen that works for you!

During my appointment on Thursday, I asked my doctor about increasing

my dose, and he said he *might* consider it after several more months

at 150 mg. I imagine it will still take some pushing and prodding on my

part, but it may help that my IgE level from 2004 was double that of my

current IgE level. I will be sure to tell him about your case when we

get to that point.

Who knows...maybe the 150 mg will eventually do the trick! It's so

difficult to be patient, but I'm trying my hardest!

Thanks again!

[Guest guest]

Hang in there . I know it's hard to be patient when you don't feel well

but fingers crossed, you'll see results soon.

I see my Doc on Nov 1st and I'm going to ask him if I can cut the booster down

to 50mg instead of 75. I'd like to take the lowest dose possible if I can.

<justinlouisville@...> wrote:

Hi ,

Thanks so much for sharing your experience with Xolair. I'm so glad you

and your doctor were able to find a dosage regimen that works for you!

During my appointment on Thursday, I asked my doctor about increasing

my dose, and he said he *might* consider it after several more months

at 150 mg. I imagine it will still take some pushing and prodding on my

part, but it may help that my IgE level from 2004 was double that of my

current IgE level. I will be sure to tell him about your case when we

get to that point.

Who knows...maybe the 150 mg will eventually do the trick! It's so

difficult to be patient, but I'm trying my hardest!

Thanks again!

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

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[Guest guest]

Thanks for your encouraging words, . I really appreciate it!

By the way, you mentioned that your symptoms became substantially

worse than normal after going off Xolair for awhile. Do you think you

were having some sort of rebound effect? I had never even considered

that before you mentioned it.

For anyone else who has gone off of Xolair for a time, have you

experienced a rebound effect where your symptoms became worse than

they were before going on Xolair?

Thanks!

>

> Hang in there . I know it's hard to be patient when you

don't feel well but fingers crossed, you'll see results soon.

>

> I see my Doc on Nov 1st and I'm going to ask him if I can cut the

booster down to 50mg instead of 75. I'd like to take the lowest dose

possible if I can.

[Guest guest]

I'm not really sure why my symptoms became worse but it was just horrible. I

suspect it is because my body was shocked by not having Xolair. It was probably

an over-reaction that would stabilize with time.

<justinlouisville@...> wrote: Thanks for your encouraging

words, . I really appreciate it!

By the way, you mentioned that your symptoms became substantially

worse than normal after going off Xolair for awhile. Do you think you

were having some sort of rebound effect? I had never even considered

that before you mentioned it.

For anyone else who has gone off of Xolair for a time, have you

experienced a rebound effect where your symptoms became worse than

they were before going on Xolair?

Thanks!

>

> Hang in there . I know it's hard to be patient when you

don't feel well but fingers crossed, you'll see results soon.

>

> I see my Doc on Nov 1st and I'm going to ask him if I can cut the

booster down to 50mg instead of 75. I'd like to take the lowest dose

possible if I can.

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

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[Guest guest]

I had to go off Xolair for about 5 months due to changes in

insurance. I slowly " got worse " during that time. Neither my

doctor nor I saw this as a rebound effect, but as due to my body

continuing to make IgE for which there was no Xolair for it to bind

to. All the new IgE was binding to mast cells and causing me to

have allergic reactions and asthma attacks. I had to have another

IgE panel done to go back on Xolair once the new insurance's pre-

exisiting condition period had past...my IgE was as high as it ever

was.

There is some thinking that folks should be able to go off Xolair

after 2-3 years. This stupifies me, unless there will be some of us

whose bodies start manufacturing IgE at slower rates or not at all

(my pulmo says this is possible).

Addy

Remember to talk to your doc before making changes to your treatment

plan.

> >

> > Hang in there . I know it's hard to be patient when you

> don't feel well but fingers crossed, you'll see results soon.

> >

> > I see my Doc on Nov 1st and I'm going to ask him if I can cut

the

> booster down to 50mg instead of 75. I'd like to take the lowest

dose

> possible if I can.

>

>

>

>

>

>

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

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30+ countries) for 2¢/min or less.

>

>

[Guest guest]

,

I just saw my doc tonight and I'm going to stay on 150/75 throughout the

winter because that is traditionally my worst time of year. I'm definitely a

warm weather person. When spring arrives I'm going to cut down to 100/100 and

if that works then 75/75. I suspect it's the frequency of the shot that is

helping me so much, rather than the dose but we'll have to experiment a little

to see if that's really the case. Only problem....Xolair doesn't come in 75mg

doses so I'm dumping part of the 150 down the drain. At that cost.....what a

shame.......

McLaughlin <gmclaughlin1000@...> wrote:

I'm not really sure why my symptoms became worse but it was just

horrible. I suspect it is because my body was shocked by not having Xolair. It

was probably an over-reaction that would stabilize with time.

<justinlouisville@...> wrote: Thanks for your encouraging words,

. I really appreciate it!

By the way, you mentioned that your symptoms became substantially

worse than normal after going off Xolair for awhile. Do you think you

were having some sort of rebound effect? I had never even considered

that before you mentioned it.

For anyone else who has gone off of Xolair for a time, have you

experienced a rebound effect where your symptoms became worse than

they were before going on Xolair?

Thanks!

>

> Hang in there . I know it's hard to be patient when you

don't feel well but fingers crossed, you'll see results soon.

>

> I see my Doc on Nov 1st and I'm going to ask him if I can cut the

booster down to 50mg instead of 75. I'd like to take the lowest dose

possible if I can.

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

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countries) for 2¢/min or less.

[Guest guest]

Addy -

Thanks for sharing your experience with this. It definitely makes

sense that people would slowly return to their original pre-Xolair

condition after stopping Xolair treatment, but it sounded like

got worse than ever right after stopping it. He's probably right

about it being something that would have stabilized with time though.

Interesting theory about some people being able to go off Xolair

after a couple of years. Why do I think they'll have a hard time

finding volunteers to stop Xolair treatment just to test this

theory?!? ;-)

Thanks again!

>

> I had to go off Xolair for about 5 months due to changes in

> insurance. I slowly " got worse " during that time. Neither my

> doctor nor I saw this as a rebound effect, but as due to my body

> continuing to make IgE for which there was no Xolair for it to bind

> to. All the new IgE was binding to mast cells and causing me to

> have allergic reactions and asthma attacks. I had to have another

> IgE panel done to go back on Xolair once the new insurance's pre-

> exisiting condition period had past...my IgE was as high as it ever

> was.

>

> There is some thinking that folks should be able to go off Xolair

> after 2-3 years. This stupifies me, unless there will be some of

us

> whose bodies start manufacturing IgE at slower rates or not at all

> (my pulmo says this is possible).

>

> Addy

> Remember to talk to your doc before making changes to your

treatment

> plan.

[Guest guest]

That sounds like a good plan, . Thanks for letting us know. It is

a shame to throw out so much of that liquid gold though!

I'm curious...is it the cold air itself that gives you problems

during the winter? Winter is one of my best seasons since most of the

allergens are gone...spring and fall are definitely my worst seasons

with all the tree and weed pollen.

Thanks,

>

> ,

>

> I just saw my doc tonight and I'm going to stay on 150/75

throughout the winter because that is traditionally my worst time of

year. I'm definitely a warm weather person. When spring arrives I'm

going to cut down to 100/100 and if that works then 75/75. I suspect

it's the frequency of the shot that is helping me so much, rather

than the dose but we'll have to experiment a little to see if that's

really the case. Only problem....Xolair doesn't come in 75mg doses

so I'm dumping part of the 150 down the drain. At that cost.....what

a shame.......

>

>

[Guest guest]

I'm not really sure. Perhaps it's the dry or cold air. I think it's a bit of

both but I know I'm definitely a warm weather person. I tend to go slightly

downhill in October, probably because of all the leaves falling/hay fever,

etc....when we get a real hard freeze that subsides but I don't completely come

around until Spring. I don't have any Spring time allergies, thankfully. C'mon

Spring.

<justinlouisville@...> wrote: That sounds like a good

plan, . Thanks for letting us know. It is

a shame to throw out so much of that liquid gold though!

I'm curious...is it the cold air itself that gives you problems

during the winter? Winter is one of my best seasons since most of the

allergens are gone...spring and fall are definitely my worst seasons

with all the tree and weed pollen.

Thanks,

>

> ,

>

> I just saw my doc tonight and I'm going to stay on 150/75

throughout the winter because that is traditionally my worst time of

year. I'm definitely a warm weather person. When spring arrives I'm

going to cut down to 100/100 and if that works then 75/75. I suspect

it's the frequency of the shot that is helping me so much, rather

than the dose but we'll have to experiment a little to see if that's

really the case. Only problem....Xolair doesn't come in 75mg doses

so I'm dumping part of the 150 down the drain. At that cost.....what

a shame.......

>

>

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

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[Guest guest]

Speak for yourself, !

>

C'mon Spring.

[Guest guest]

Winter is no picnic for me either. Moldy indoors combined with all

kinds of stinky odors and fragrances that accumulate with windows shut

and no escape to the fresh outdoors because of the cold. I really

dread winter.

> >

> C'mon Spring.

>