Re: Xolair and Hormone Surges (Women only)

[Guest guest]

Wow. I am sorry to hear you are having so much trouble. I get my

Xolair twice a month - thank goodness my cycle hasn't been following

that schedule!

I've increased a cup size over years of being on pred - I have not

noticed any differences since starting Xolair.

I hope some of the others will be able to post some helpful

information for you.

Good luck and take care,

Addy

Group co-owner

>

> I can't believe my first question out of the gate is going to be this

> one, but I'm so thrilled to find this group, that I suppose I'll ask

> it anyway.

>

> I'm having a lot of trouble with the Xolair shots. I've been on them

> for months now - I started them in the fall, I think. Specifically,

> although this sounds weird and I can't get my pulmonologist to listen

> to me, Xolair seems to be completely controlling my hormone levels.

> I'm wondering whether anyone else is finding this to be the case.

>

> Specifically, I've developed horrible acne, had about a 10-fold

> increase in migraines (I now take 100 mg of Topamax), switched from a

> regular cycle to one completely controlled by when I get my shot (I

> get it the day after whether I've already had it that month or not),

> increased a cup size, and had a significant increase in catamenial

> seizures (I'm epileptic - yes, total freak here). The shot has been

> tremendously successful respiratorily - SO successful - but I'm

> really scared.

>

> Has anyone noticed any of this? I keep looking at the increased

> cancer risk and thinking, " Oh my god. I'm going to get breast

> cancer. " But my pulmonologist is acting like it's no big deal/like

> I'm completely insane. I think it makes her uncomfortable, frankly.

> It makes me uncomfortable to talk about. I went through this with

> prednisone where no one would listen and I shut up. Then, I spent

> years paying the price. I'd feel better if I knew whether anyone was

> experiencing this, too.

>

> Thoughts? Observations? Help?

>

[Guest guest]

It sounds like you're having a pretty tough time. It may well be that

you are having an unusual side effect of Xolair, although it's

difficult to figure out why it might produce such changes. It's also

possible that you began to have hormonal changes coincidental with

but not due to starting on Xolair. I think it's very important for

you to see your gynecologist ASAP to sort out what's going on. Please

keep us posted and best of luck to you.

Fran

>

> I can't believe my first question out of the gate is going to be

this

> one, but I'm so thrilled to find this group, that I suppose I'll

ask

> it anyway.

>

> I'm having a lot of trouble with the Xolair shots. I've been on

them

> for months now - I started them in the fall, I think. Specifically,

> although this sounds weird and I can't get my pulmonologist to

listen

> to me, Xolair seems to be completely controlling my hormone levels.

> I'm wondering whether anyone else is finding this to be the case.

>

> Specifically, I've developed horrible acne, had about a 10-fold

> increase in migraines (I now take 100 mg of Topamax), switched from

a

> regular cycle to one completely controlled by when I get my shot (I

> get it the day after whether I've already had it that month or

not),

> increased a cup size, and had a significant increase in catamenial

> seizures (I'm epileptic - yes, total freak here). The shot has been

> tremendously successful respiratorily - SO successful - but I'm

> really scared.

>

> Has anyone noticed any of this? I keep looking at the increased

> cancer risk and thinking, " Oh my god. I'm going to get breast

> cancer. " But my pulmonologist is acting like it's no big deal/like

> I'm completely insane. I think it makes her uncomfortable, frankly.

> It makes me uncomfortable to talk about. I went through this with

> prednisone where no one would listen and I shut up. Then, I spent

> years paying the price. I'd feel better if I knew whether anyone

was

> experiencing this, too.

>

> Thoughts? Observations? Help?

>

[Guest guest]

wow, sounds like you're having a real tough time with everything.

that must be so frustrating!!!

i can only reflect on the " being irregular " part. for me (and this

is probably waaaaaay more than anyone cared to know about me), i'm

very irregular. my " normal " is to spot for 10 days before i get my

period. it started just before the xolair, and anytime we change

meds (adding or replacing) it gets a little worse, and then levels

out to the 10 days prior thing.

i mentioned it to my dr, and she was confused. i mentioend it to my

gyn and she was concerned. i've had blood labs, internal ultrasounds

and such...and nothing is wrong. she's guessing that its just that

this spotting is just my body's reaction to the stress the meds put

on it. (although i'd think NOT BREATHING would be more stressful).

some random thoughts (remember, i'm just a schmuck on xolair, not a

medical professional or anything).

possibly, your period following the shots is a similar reaction,

just stress?? i have no explanation for the increase in cup size.

as for the seizures, maybe part of the binding process xolair does

is also binding some of your anti-seizure meds?? or maybe the

xolair is speeding up something in your body, causing you to need

more meds?? could your migraines be related to the seizures? (i

used toget focal seizures that were stress-induced - always started

with an incredible headache)

its just a thought....i'm not saying it isn't the xolair...just

thiking out loud...

(and there's not much thinking going on..its been a crazy week!!)

heather

>

> I can't believe my first question out of the gate is going to be

this

> one, but I'm so thrilled to find this group, that I suppose I'll

ask

> it anyway.

>

> I'm having a lot of trouble with the Xolair shots. I've been on

them

> for months now - I started them in the fall, I think.

Specifically,

> although this sounds weird and I can't get my pulmonologist to

listen

> to me, Xolair seems to be completely controlling my hormone

levels.

> I'm wondering whether anyone else is finding this to be the case.

>

> Specifically, I've developed horrible acne, had about a 10-fold

> increase in migraines (I now take 100 mg of Topamax), switched

from a

> regular cycle to one completely controlled by when I get my shot

(I

> get it the day after whether I've already had it that month or

not),

> increased a cup size, and had a significant increase in catamenial

> seizures (I'm epileptic - yes, total freak here). The shot has

been

> tremendously successful respiratorily - SO successful - but I'm

> really scared.

>

> Has anyone noticed any of this? I keep looking at the increased

> cancer risk and thinking, " Oh my god. I'm going to get breast

> cancer. " But my pulmonologist is acting like it's no big deal/like

> I'm completely insane. I think it makes her uncomfortable,

frankly.

> It makes me uncomfortable to talk about. I went through this with

> prednisone where no one would listen and I shut up. Then, I spent

> years paying the price. I'd feel better if I knew whether anyone

was

> experiencing this, too.

>

> Thoughts? Observations? Help?

>

[Guest guest]

Way frustrating, right? Everything has always been *so* regular for

me. Even when I was on prednisone for years, at least until the very,

very end when I was like the poster child for Cushing's. So, in

general, this is very weird. I went from, like, 15 years of normal to

all of a sudden total freakishness and all these weird clearly

hormonally induced things that increase in severity with the shot and

totally correspond to the shot (which I haven't always gotten as

strictly monthly as I should have due to scheduling problems at the

pulmonologist's office making it 3-7 weeks between appointments).

I agree that med stress definitely could be a contributor, so I've

been trying to account for that on some level. I didn't have spotting

until the Xolair, but I have bleeding problems in general with the

Xolair - my nose kind of bleeds if I touch the inside with a tissue

and well... everything bleeds. 'Nuff said.

I'm not taking anti-seizure drugs, so it isn't that. (I'd rather have

seizures than be dulled out.) I'm a temporal lobe epileptic, so it's

not some other kind of seizure. TL seizures are really distinctive.

Appreciate the thoughts though. I do think medication stresses are

probably more of what goes wrong than doctors even give them credit

for. God only knows what we're doing to our bodies with all of this.

At least I can breathe at the moment. That part is good. Liking that.

Have a good weekend.

> >

> > I can't believe my first question out of the gate is going to be

> this

> > one, but I'm so thrilled to find this group, that I suppose I'll

> ask

> > it anyway.

> >

> > I'm having a lot of trouble with the Xolair shots. I've been on

> them

> > for months now - I started them in the fall, I think.

> Specifically,

> > although this sounds weird and I can't get my pulmonologist to

> listen

> > to me, Xolair seems to be completely controlling my hormone

> levels.

> > I'm wondering whether anyone else is finding this to be the case.

> >

> > Specifically, I've developed horrible acne, had about a 10-fold

> > increase in migraines (I now take 100 mg of Topamax), switched

> from a

> > regular cycle to one completely controlled by when I get my shot

> (I

> > get it the day after whether I've already had it that month or

> not),

> > increased a cup size, and had a significant increase in

catamenial

> > seizures (I'm epileptic - yes, total freak here). The shot has

> been

> > tremendously successful respiratorily - SO successful - but I'm

> > really scared.

> >

> > Has anyone noticed any of this? I keep looking at the increased

> > cancer risk and thinking, " Oh my god. I'm going to get breast

> > cancer. " But my pulmonologist is acting like it's no big

deal/like

> > I'm completely insane. I think it makes her uncomfortable,

> frankly.

> > It makes me uncomfortable to talk about. I went through this with

> > prednisone where no one would listen and I shut up. Then, I spent

> > years paying the price. I'd feel better if I knew whether anyone

> was

> > experiencing this, too.

> >

> > Thoughts? Observations? Help?

> >

>