Xolair, Female issues, this and that (long post, sorry)

[Guest guest]

men, bail out while you can

others...thanks for reading, sorry this is long

Well, it's been a while since I posted what's going on in my

world. There was a post a while ago in terms of women issues. Since I

have been on Xolair… April 2004, my menses have not stopped. Every

two weeks it appears it's my menses with a steady light flow in

between. I have not gotten any relief. I have been to doctors between NY

and FL. I have had biopsies, ultrasounds, you name it, I have had it. I

feel like a lab rat. I have been on so many birth control pills; I could

have a family album of them (just like asthma meds). The pills are not

helping with the cysts and fibroids. This week, was the Mayo Clinic (had

to take time off from work to go to the other side of the state) and

they concurred to what all the other doctors have said. The end

result…a laparoscopic vaginal hysterectomy. I don't know if this

is a direct connect to Xolair but this has all happened in conjunction

with it. I asked my dr to call Genech, he said he would. I have to hope

he follows through.

What is scary is that I am in my early 30's. I am doing this alone.

Those of you who have been with this group for a while know my loving

family makes the Gotti family (those who do not know the

Gotti's…think of the Sopranos); anyway, they make my family look

like Little House on the Prairie. One of the options in the early stage

was an ablation. My family objected 100% bringing up pro-life issues.

Now I am at the point, I am not sharing this info with them. They do not

go through what I am going through. I feel funny not telling them,

especially because this is major. My reasoning for not sharing with them

is for self preservation. I have been told the recovery is roughly 3

weeks. I hope so, because this summer I am moving to land for a

teaching job I accepted. (Aside from this news of the procedure, life is

good). I am fortunate enough to have friends who said they will help me

with the recovery process. I am going to have to ask any of them to help

me move. (Gutsy huh? I need help though). This procedure they say will

have me overnight or two at the hospital. I am just concerned about the

anesthesia. When I had my wisdom teeth removed I had to go under

anesthesia and that cost me $1000 after all was said and done.

I am still behind the eight ball (Hence me making my situation better by

moving for an increase in salary…I did factor in the cost of

living). The co-pays for prescripts here are $50; that adds up… as

you all know. I feel my paycheck is going for all this, leaving me

scarcely with a life.

I called National Jewish in Boca Raton, Fl (they are on the other side

of the state from me). I am waiting to hear back. I did a Google search;

I am seeing National Jewish in Denver, Colorado.

(thoughts/suggestions/comments?)

Again, I don't know if the Xolair is the culprit, it just seems to

be logical because this all came about when I started. Now, I am at the

point relieved of the procedure because the end is in sight. I am

anemic, always tired, always having to bring a change of clothes and

always having to wear dark clothes. This will also be one less health

issue to deal with. Florida is already God's waiting room; I

don't want my number called yet and be another statistic.

As for the other health issues, they are being maintained. However, I

can't lose weight and now I feel with Lexapro, I am putting on more

weight. The weight from Prednisone just came off…now I put weight

back on [] . I am 5 foot 1 and 137 pounds (and increasing); and the

explanation of big boned does not help me. The Lexapro though has

diminished much of my anxiety and now the pendulum is the other way, I

sleep a lot. I used to sleep three hours here and three hours there.

Allergies…the nasal spray companies should have me on the ad poster;

I use so many of them. I am on 5 right now, plus Allegra D.

The pollen count has been off the charts in Florida, I am miserable.

This week I am thinking of going to motor vehicles to change the car

color from green to pollen yellow/green.

The asthma seems to be the best right now. I had a few issues again with

the asthma/allergies because mold was once found once again in my

classroom. The union had to step in to get the wheels in motion going to

rectify the problem, now the room was cleaned out and a dehumidifier is

present. I don't know for how long, but I will cherish it while it

is there. Right now, Fl is lacking rain. Brush fires will be upon us

again, so I anticipate that up and coming.

I am still dealing with the pain in my hips. I go for another Dexascan

in May. I am now in the osteoporosis stage (even with all the calcium I

have taken throughout the years and trying to maintain a diet with much

of the calcium as well). The explanation I have been given is all the

high dosages of corticosteroids. Dr wants to keep an eye on this because

I am being told that by the time I am in my 40's I will be facing

hip replacement. Joy! [:-s]

The good thing about land…. Hopkins is close by; I feel I

will be getting excellent care. I am already a lab rat; I should donate

my body to science. They will surely see a phenomenon …my body will

radiate from all the meds and will probably never decay….it will be

well preserved.

I'll keep you posted.

[Guest guest]

I've kind'a " been there and done that " too in many ways.

The problem is that steroids wreck havoc with the female system and cause

polycystic ovarian disease among other things. I was on steroids every summer

by injection from my mid teens to late 20s. Fortunately I hooked up with a prof

(doctor) in reproductive medicine and endocrinology (was not trying to conceive

though) and learned about it. It's not uncommon. It will last a lifetime if

not controlled. Ironically, the treatment was very low dose steroid and keeping

a basal temp chart and having check-ups to be sure ovulation is taking place at

the right time. Many women can get off it after a few months; others continue

longer. The idea of on-time ovulation is NOT for conception but rather because

it is more likely to balance out the hormones. Basically the low dose steroid

tricks the endocrine glands into thinking that enough male hormone has been

manufactured and makes it stop. Excess male hormone (with typical side effects)

are very common with polycystic ovarian disease. Birth control pills are the

WORST thing. Been there and done that too. It took years for me to get

straightened out but I did and it helped with other problems too. In particular

it was a doc who finally came to listen to me and take me seriously.

I've often wondered about Xolair and it's effect on various body systems but I

tend to doubt that what you're having is caused by it although it cannot be

ruled out - more likely the steroids and stress and quite possibly other med

you're on or have been on have caught up with you. I was also a wreck at 30.

***I am not a doctor, though, so the usual disclaimer applies here!*** (smile)

Incidentally, it took 8 months of Xolair before I saw any change in the nasal &

sinus problems. There was some relief from asthma before the " head stuff " got

better. The prednisone wrecks the hips (bones) too. Thankfully, the same doc

watched me closely with blood tests as I approached menopausal age and got me

onto ethinyl estradiol (compounded capsule) as soon as the tests showed I was

going into menopause. That has saved me so far from a lot of the grief my mom

(who was never on steroids) and my sister have had. I'm 5ft 1 too ... won't

mention my weight but it's high!

Take care!

>

>

> men, bail out while you can

>

> others...thanks for reading, sorry this is long

>

>

>

> Well, it's been a while since I posted what's going on in my

> world. There was a post a while ago in terms of women issues. Since I

> have been on Xolair… April 2004, my menses have not stopped. Every

> two weeks it appears it's my menses with a steady light flow in

> between. I have not gotten any relief. I have been to doctors between NY

> and FL. I have had biopsies, ultrasounds, you name it, I have had it. I

> feel like a lab rat. I have been on so many birth control pills; I could

> have a family album of them (just like asthma meds). The pills are not

> helping with the cysts and fibroids. This week, was the Mayo Clinic (had

> to take time off from work to go to the other side of the state) and

> they concurred to what all the other doctors have said. The end

> result…a laparoscopic vaginal hysterectomy. I don't know if this

> is a direct connect to Xolair but this has all happened in conjunction

> with it. I asked my dr to call Genech, he said he would. I have to hope

> he follows through.

>

> What is scary is that I am in my early 30's. I am doing this alone.

> Those of you who have been with this group for a while know my loving

> family makes the Gotti family (those who do not know the

> Gotti's…think of the Sopranos); anyway, they make my family look

> like Little House on the Prairie. One of the options in the early stage

> was an ablation. My family objected 100% bringing up pro-life issues.

> Now I am at the point, I am not sharing this info with them. They do not

> go through what I am going through. I feel funny not telling them,

> especially because this is major. My reasoning for not sharing with them

> is for self preservation. I have been told the recovery is roughly 3

> weeks. I hope so, because this summer I am moving to land for a

> teaching job I accepted. (Aside from this news of the procedure, life is

> good). I am fortunate enough to have friends who said they will help me

> with the recovery process. I am going to have to ask any of them to help

> me move. (Gutsy huh? I need help though). This procedure they say will

> have me overnight or two at the hospital. I am just concerned about the

> anesthesia. When I had my wisdom teeth removed I had to go under

> anesthesia and that cost me $1000 after all was said and done.

>

> I am still behind the eight ball (Hence me making my situation better by

> moving for an increase in salary…I did factor in the cost of

> living). The co-pays for prescripts here are $50; that adds up… as

> you all know. I feel my paycheck is going for all this, leaving me

> scarcely with a life.

>

> I called National Jewish in Boca Raton, Fl (they are on the other side

> of the state from me). I am waiting to hear back. I did a Google search;

> I am seeing National Jewish in Denver, Colorado.

> (thoughts/suggestions/comments?)

>

> Again, I don't know if the Xolair is the culprit, it just seems to

> be logical because this all came about when I started. Now, I am at the

> point relieved of the procedure because the end is in sight. I am

> anemic, always tired, always having to bring a change of clothes and

> always having to wear dark clothes. This will also be one less health

> issue to deal with. Florida is already God's waiting room; I

> don't want my number called yet and be another statistic.

>

> As for the other health issues, they are being maintained. However, I

> can't lose weight and now I feel with Lexapro, I am putting on more

> weight. The weight from Prednisone just came off…now I put weight

> back on [] . I am 5 foot 1 and 137 pounds (and increasing); and the

> explanation of big boned does not help me. The Lexapro though has

> diminished much of my anxiety and now the pendulum is the other way, I

> sleep a lot. I used to sleep three hours here and three hours there.

>

> Allergies…the nasal spray companies should have me on the ad poster;

> I use so many of them. I am on 5 right now, plus Allegra D.

>

> The pollen count has been off the charts in Florida, I am miserable.

> This week I am thinking of going to motor vehicles to change the car

> color from green to pollen yellow/green.

>

> The asthma seems to be the best right now. I had a few issues again with

> the asthma/allergies because mold was once found once again in my

> classroom. The union had to step in to get the wheels in motion going to

> rectify the problem, now the room was cleaned out and a dehumidifier is

> present. I don't know for how long, but I will cherish it while it

> is there. Right now, Fl is lacking rain. Brush fires will be upon us

> again, so I anticipate that up and coming.

>

> I am still dealing with the pain in my hips. I go for another Dexascan

> in May. I am now in the osteoporosis stage (even with all the calcium I

> have taken throughout the years and trying to maintain a diet with much

> of the calcium as well). The explanation I have been given is all the

> high dosages of corticosteroids. Dr wants to keep an eye on this because

> I am being told that by the time I am in my 40's I will be facing

> hip replacement. Joy! [:-s]

>

> The good thing about land…. Hopkins is close by; I feel I

> will be getting excellent care. I am already a lab rat; I should donate

> my body to science. They will surely see a phenomenon …my body will

> radiate from all the meds and will probably never decay….it will be

> well preserved.

>

> I'll keep you posted.

>

>

>

>

>

>