Re: Steroid dependent on high-dose inhaled steroids only

[Guest guest]

I was in the same boat as you before starting Xolair last spring. I could miss

one night of Advair or even Singulair and I'd wake up not being able to breath

well during the night. I came off of it (the Xolair) for a month during the

summer while insurance issues were cleared up after being on it for 3 months,

then have been on it ever since. I am on Advair 500/50, Qvar, Singulair 10mg,

Astelin, Singulair, Clarinex, Zyrtec, and Nasacort AQ daily, plus albuterol as

needed (which used to be most every day). After being off the Xolair for a few

weeks I realized exactly how much it had been helping. I hadn't used my

albuterol since about the fourth week on the Xolair and was back to using it

most every day. Even got put on a medrol pack during my hiatus from the Xolair.

Now that I've been back on it since August full-time, I'm back to not using

albuterol hardly at all. The only times I remember using it after cotton

season (which always kills me) was after playing with a dog for

about an hour and after a good laughing spell where I couldn't catch my breath.

The last two months I haven't really used any (yes, I do mean ANY) of my other

meds, just the Xolair, although I'm not supposed to stop taking them. I took a

few for awhile then I kept forgetting since I felt so good. I've had maybe two

mild asthma attacks in this time. I never thought anything would provide this

much relief. When I did get a mild attack I thought I was going to have a panic

attack (which is unlike me) due to not remembering what that felt like. After

all my rambling on, my point is that I do believe it is possible to get off a

lot of the inhaled steroids.

Hope you experience as much success if not more than I have.

tiredofsteroids <sitesee@...> wrote:

I have severe adverse effects to prednisone,including psychiatric, so

my doctor only puts me on it rarely and for short periods. But I'm on

very high dose inhaled steroids - Advair 500/50 twice daily plus

Flovent 440 twice daily, plus Pulmicort nebs for flare-ups. I have

the typical body shape of steroid dependence - abdominal obesity (and

cannot get the weight off), full face, thin arms and legs, and my

skin is very thin and fragile, tearing and bruising very easily.

Also,my reflux worsened greatly and my blood pressure went way up

when I went on this regimen 5 years ago. And my mind....well, I'm not

myself.

My peak flows drop immediately and I start coughing anytime I try to

back off on the Flovent just a little. My own adrenal production of

cortisol is completely suppressed per lab work. So - I'm totally

steroid dependent, even though all I get is by inhalers, and I'm

desparate to back off the inhaled steroids, which is why I'm starting

Xolair next week. But it seems most everybody in this e-group is much

worse in terms of asthma control and is on prednisone in addition to

the inhalers. I almost feel like a wuss when I read how much more

terribly so many of you have been doing. But...if others like me are

out there, please share what your experience has been on Xolair. Have

you been able to get off inhaled steroids? If so, do you have a tough

time doing that because of difficult symptoms appearing?

Fran

[Guest guest]

Fran,

Don't feel like a wuss - you've been struggling with this without

being able to use prednisone - I can't imagine.

I've been able to cut back on all my meds. A lot of us have

experienced increased symptoms towards the end of each dose and the

time for the next one, but that decreases over time (I'm talking

months).

Good luck to you. Let us know how you're doing.

Take care,

Addy

PS - I'm having trouble with post-pred weight. The bruising is

still an issue, although not as bad.

>

> I have severe adverse effects to prednisone,including psychiatric,

so

> my doctor only puts me on it rarely and for short periods. But I'm

on

> very high dose inhaled steroids - Advair 500/50 twice daily plus

> Flovent 440 twice daily, plus Pulmicort nebs for flare-ups. I have

> the typical body shape of steroid dependence - abdominal obesity

(and

> cannot get the weight off), full face, thin arms and legs, and my

> skin is very thin and fragile, tearing and bruising very easily.

> Also,my reflux worsened greatly and my blood pressure went way up

> when I went on this regimen 5 years ago. And my mind....well, I'm

not

> myself.

>

> My peak flows drop immediately and I start coughing anytime I try

to

> back off on the Flovent just a little. My own adrenal production

of

> cortisol is completely suppressed per lab work. So - I'm totally

> steroid dependent, even though all I get is by inhalers, and I'm

> desparate to back off the inhaled steroids, which is why I'm

starting

> Xolair next week. But it seems most everybody in this e-group is

much

> worse in terms of asthma control and is on prednisone in addition

to

> the inhalers. I almost feel like a wuss when I read how much more

> terribly so many of you have been doing. But...if others like me

are

> out there, please share what your experience has been on Xolair.

Have

> you been able to get off inhaled steroids? If so, do you have a

tough

> time doing that because of difficult symptoms appearing?

> Fran

>