Re: Xopenex HFA

February 7, 2006

Hi All,

I haven't posted in many months (its been a long, rough road as of

late but more on that later ). I've been on Xolair since May 2005

(375mg/2weeks), and was started on it primarily because of my IgE

level of 1100, many allergy symptoms despite lots of allergy meds, and

chronic allergic sinusitis -- not really because of my asthma (which

to that point had been controlled for the most part with advair 500/50

twice a day, singulair and the very occasional use of xopenex 0.63 via

neb). My MD (pulmo/allergist/immuno) is also a speaker for sepracor

(the comp that makes xopenex and a vaccine for RSV among other meds)

and so I had been hearing about the inhaler for about a year, and

finally got it about a month and a half ago. My doctor instructed me

to use 2 puffs about a minute apart with a spacer (just like my

albuterol inhaler), but, if after giving the first 2 puffs a few

minutes to kick-in, i didn't feel significantly better, I could use an

additional 2 puffs because 2 puffs of the xopenex inhaler (which is

only available in one dose at this point - 45mcg/puff), add up to be a

smaller dose than the xopenex 0.63mg/3mL I use at least every 6hrs via

neb (since JULY...uggh). I haven't needed the inhaler for an emergency

(yet... thank God), but have used it when its not convenient to get to

my neb (i'm a college student, professors probably wouldn't appreciate

me pulling out my neb in the middle of a lecture hahaha). I find that

2 puffs of the inhaler generally don't make me feel that much

more 'open', but the total of 4 puffs does make me feel pretty open

fairly quickly, it just doesn't give me the same 'umph' as my neb

(which is to be expected I guess). The xopenex inhaler as far as i'm

concerned is far better than the albuterol inhaler I used to have to

carry as a backup in case of emergency - it makes me far less shaky

and opens me up better (4 puffs not 2 as with albuterol).

And now for my story ... I began seeing my current

pulmo/allergist/immuno in March 2005 at the suggestion of my primary

(who trained with this man) because my pulmo at the time kept putting

me on more meds but would then say that I didn't have asthma (????).

So, this current doctor began Xolair in May after doing extensive

blood work, PFTs, a barium swallow and endoscopy to rule out GERD, a

chest xray, and obviously, a very thorough exam. As mentioned above,

my asthma had not been a major problem for me, although my current

doctor definitely felt based on my PFTs that I had asthma that was not

being adequately controlled with my advair/singulair/occasional

xopenex regimen. In June, he switched me from advair 500/50 to

pulmicort turbuhaler 600mcg (3puffs) twice a day, and foradil 12mcg

twice a day with the reasoning that with some patients splitting up

the long acting bronchodilator and the inhaler corticosteroid works

better than taking them together. This switch seemed to help (I hadn't

noticed the compensations for breathing I had been making), and I was

doing great up until July 2nd. On July 2nd I got stung by a bee in my

backyard (during my sisters HS grad party, when there were a ton of

ppl around of course) and had to self-administer my epi-pen after

taking 2 atarax (similar to benadryl -- it works better for me than

benadryl does) didn't reverse the reaction. I had a history of 4 prior

anaphylactic reactions but had never self-administered epi before -

for all of the other reactions, I was able to get to my doctor (or

already at my dr's office (alergy shots = bad for me ) ) for the

reaction. So, after administering the epi-pen, I headed off to the ER

(at the phone direction of my primary doctor - my

pulmo/allergist/immuno is about 2hrs away from my home (but worth

it!) - of course, my mom drove, etc... . By the time we got to the ER,

my sats were 94 (I can usually sustain 99-100 very easily - so 94 is

significant for me), and my blood pressure had begun to re-drop as the

pi-pen wore off. My mom and I didnt really realize how bad the

situation was and so we didnt find it that out of the ordinary that

the ER doctor didnt seem too 'excited' by the situation. He didnt even

have the nurse start an IV! He simply had me take 40mg of prednisone

in the ER and after complaining for about 40 min that I still felt the

back of my throat was 'tight', he finally gave me another dose of epi

IM. My asthma didn't kick-in at all. After only an hour or so, I was

sent home with instructions to taper the pred 10mg/day and follow up

with my primary at the beginning of the following week. I felt fine.

The next morning, I woke up feeling chest tightness for the first time

in months. I began using my xopenex neb every 4 hours and it helped,

but wore off very quickly. At this point, we figured it was just

the 'secondary' reaction and that it would pass. The next day (July

4th -- the dr's office was closed), I felt even tighter, and was using

my neb every 2 hours around the clock! Finally, the next day I was

able to get into my primary and up to that point, (she hadn't been my

primary for very long) she had never heard my lungs be anything but

clear and completely open. She listened to my lungs and being that I

had done a neb recently, I was expecting her to say that I was clear

and completely open and just to bump the pred for a couple of days.

Well, her jaw hit the floor when she listened to my lungs because

apparently, although clear, I was only breathing with my upper lobes

on both sides! -- I was sooo tight that my middle lobe and bottom

lobes had COMPLETELY clamped down. After 2 xopenex 1.25 (which makes

me VERY shaky), I still had not opened up at all. My doctor attempted

to contact my pulmo/allergist/immuno who was on vacation of course,

but she decided to give me a shot of methylprednisolone and send me

home to continue nebulizing with xopenex 1.25 every 2hrs as needed,

increase the pred to 60mg/day and follow-up in 2 days or before if

necessary.

I followed her instructions and by noon the next day when I did a

neb, I felt absolutely NO relief afterwards - so back to my doctor I

went, and I was even more clamped down than the day before. I was

admitted to my local hospital for solu-medrol IV and to try to space

out the nebs. After a couple of doses of the solu-medrol, my lungs

opened up completely, and my primary would have released me after 2

days, but by the second day, she was able to get a hold of my

pulmo/allergist/immuno who had her keep me 1 more day. I got released

on a Saturday morning on 60mg pred/day and tapering 10mg every other

day, and xopenex 0.63 q4h and by Monday morning was starting to feel

clamped down again. Back to my primary I went, and she contacted my

pulmo/allergist/immuno right away because at that point I had poor air

entry bilaterally and had no breath sounds in my left base again. He

suggested adding atrovent to every other xopenex neb treatment, and

had me begin monitoring my peak flows before and after each neb. After

the nebs in the dr's office, my peak flow was 420. He also gave me all

of his different office and voicemail #'s (he works at a major

teaching hospital in NYC and travels to various offices throughout

Brooklyn and Staten Island) and instructed me to call him every

morning for the next few days so that he could more directly monitor

my breathing. At this point, it was the middle of July in NY, so the

humidity was very high, which, as you all know, does not help asthma,

so I had to stay in the air conditioning, drink major amounts of

water, and was instructed to 'sit down and shut up' -- i was not

allowed outside except to get to the car to go to the doctor. I called

my pulmo on tues morning with peak flows around 400 and doing nebs

every 4 hrs, he had me increase to every 2hrs, change the pred to 30mg

three times a day and go from there, by that friday, he had started me

on theo-24 because my peak flows were barely making it to 350 post

nebs. My primary doctor (and the other 5 drs in the practice) only had

2 other patients in their very large practice on theophylline (and one

of the others is my sister hahaha), so they had very limited

experience with the drug. My pulmo/allergist/immuno had also increased

my pred to 60mg three times a day (!!) but just for 1 day -- in an

attempt to quickly get the inflammation under control. It didnt work.

The following Monday, I called him with post-neb peak flows of 320

(with xopenex 1.25 q2h!) and he said to head right on over to my

primary, and have her give him a call from the office. Of course it

was lunch time and my doctor wasn't there, so another dr in the

practice listened to my lungs and marveled at the fact that I was even

able to walk because I was so completely clamped down (go me!). He had

me do a xopenex 1.25 neb and by the time I was done with that my

doctor had returned from lunch and listened to my lungs to find that I

was still completely clamped down, I could get out maybe 3 words at a

time, and was apparently somewhat blue -- she called my

pulmo/allergist/immuno and he said to admit me again -- this time

125mg solu-medrol IV loading dose, and 60mg q6h, xopenex 0.63 q3h (the

1.25 was making me too crampy/shaky), atrovent nebs q6h, the theo-24,

diflucan for the thrush the pred had given me, and all my allergy

meds. I ended up being in the hospital for 10 days and during that

time, we were lowering my solu-medrol dose almost daily and trying to

achieve a theophylline level within the therapeutic range of 10-20.

This was all being done like a game of telephone gone terribly wrong

because my pulmo/allergist/immuno was trying to dictate orders from

2hrs away to my primary group (only 1 of which actually knew the man),

and it just got massively out of control. They didnt want to transfer

me because spending at least 2hrs in an ambulance in 100% humidity was

not a good idea and going via helicopter was not an option. I became

very frustrated because my peak flows really didnt seem to be

improving all that much and my theophylline level was all over the

place, but mostly on the low end of therapeutic if not sub-

therapeutic, despite higher and higher doses. I became quite OCD about

the peak flows, and was up at 2am writing these long lists of random

things, etc... (thanks to the steroids!)... needless to say -- it was

noot fun at all. My pulmo got word of some of this info, apparently

not all, and began to tell my primary group that he thought I was

having anxiety attacks - and that the anxiety was making the asthma

worse which made the anxiety worse and it started this whole 'vicious

cycle'. This 'comment' made me even more frustrated because I knew

that anxiety was not the issue -- the OCD-ness was because of the

steroids and I knew that my peak flows and theophylline level had to

be a result of something else -- because I just wasnt really getting

better. After 10 days, I was discharged not feeling all that much

better -- but nonetheless, it was definitely nice to be out of the

hospital. I saw my pulmo/allergist/immuno for the first time since the

bee sting a week after discharge, and at that point, he apparently

found out for the first time that I had been on diflucan for the

thrush -- which low and behold, lowers theophylline levels! thus, the

lower the theo level, the less bronchodilaton i was receiving from the

theo and the lower my peak flows! MYSTERY SOLVED! Anyway, now we were

into the beginning of august and I was still on massive doses of pred,

I had all of the side effects of it (fun stuff - not), and I was

supposed to return to college in the beginning of september. August

was a very looong month, I was at my primary's office at least 3 times

a week with either decreased breath sounds, or just the feeling of

tightness in my chest, and we ended up playing around with my pred and

theo a lot trying to find the right combo while still tapering the

pred as quickly as was safe. By the end of August, it was decided by

my doctors, parents and I, that it would be best for me to take the

fall semester off from school to recover and that hopefully, I would

be able to return for the spring semester. This was a major setback as

far as I was concerned and I became even more angry and frustrated

with the situation. At the beginning of September, I was having

significant trouble breathing again and went to my primary who said

that my entire right base was closed again, despite repeated nebs it

didt open up. We bumped the pred and nebs to no avail and after about

a week of playing around with this right base -- it was decided that

my pulmo would do an exploratory bronchoscopy to see if there was any

sort of obstruction.

I had the bronchoscopy at the end of September and although it is

usually an outpatient procedure, my pulmo decided to keep me overnight

(he told me it was because it was a 2hr drive home but I overheard him

telling a nurse it was because I was his " steroid dependent

asthmatic " ). The bronchoscopy re-newed my faith in my doctor. He is an

amazing man -- he knew I was nervous the morning of the procedure, but

I was trying to hide it -- he walked into the 'holding-area' and gave

me our usual 'greeting hug', and calmly explained the procedure like

it was no biggie (meanwhile he's like " and if you should stop

breathing, we'll just stick the tube down your throat " (like it was

nothing lol)), and he re-assurred me that he would be the only one

touching the scope even though there would be a lot of residents and

med students in the room. I was going to go under sedation but not

general anesthesia or anything like that. Once in the room, I was just

kinda hanging out, lying down on the gurney, looking around at all the

people and whatnot as everyone was preparing and all of a sudden, I

felt someone stroking my head, I looked up to find my pulmo at the

head of the bed, again, trying to calm me down (he's the sweetest man

in the world). He was telling me that everything was going to be ok,

he was going to be there the entire time, he was going to take care of

me, etc... -- the anesthesiologist started the IV and began injecting

the sedative, and as she was doing so, my doctor was going " just let

your eyes close, I'm right here baby, I'm right here, everything's

gonna be ok " -- needless to say, I fell asleep like a baby with not a

care in the world. Apparently though, I put on quite a show for all of

the residents and med students gathered in the room during the bronch.

According to my doctor, with the amount of sedation I had received, I

should not have been able to cough more than once or twice during the

entire procedure, and yet, I coughed throughout the entire thing and

my lungs were so irritated by the procedure that they had to re-sedate

me a number of times. I woke up to my pulmonologist kissing my cheek

and whispering in my ear that I did a great job (he was apparently

lying lol) -- but afterwards, it was decided that there was no

obstruction and that my right base was just more sensitive than the

rest of my lungs and therefore clamped down easier. The extent of my

coughing during the procedure led to the conclusion that I have a

hyper-reactive central airway - I believe my pulmonologist made this

term up - he says that with the slightest foreign particle, post-

nasal drip, allergen, cold-air exposure, etc... -- I go into

laryngospasm and cut off air supply to my lungs which causes

bronchospasm and then coughing with the asthma causes my larynx to

become inflammed and irritated which causes any later laryngospasm to

last longer and make the bronchospasm worse, etc... -- another one of

those cycles. The treatment for this laryngospasm was to increase my

atrovent nebs to twice as often as the xopenex nebs, at that point

atrovent every 3hrs, xopenex 0.63 every 6h. This worked wonders! For

many asthmatics apparently, atrovent doesnt work that well, but for

me, it is a miracle -- it keeps the mucus production under control so

that I don't plug as easily and it relaxes the smooth muscles and kind

of gives the xopenex a jump-start so that I don't have to use the

xopenex as often which is nice because I am very sensitive to it and

tend to get hypokalemic (too little potassium) and cramp up (which

leads to secondary bronchospasm).

The prednisone was gradually tapered throughout the fall to an

every other day regimen (apparently makes my adrenals kick in faster).

But despite the tapering, my immune system has suffered a great deal

and I have had what seems to be one continuous sinus infection since

October, and had bacterial pneumonia in October, and the flu in

December. Despite all of that, I was thankfully allowed to return to

college for the spring semester, with a great deal of retrictions

though. I was sent back with instructions to do my atrovent nebs q3h,

xopenex 0.63 q6h (around the clock), my oral meds of allegra, atarax,

theo-24, pred every other day, singulair, foradil, pulmicort,

pseudovent (guiafenesin and pseudoephedrine), prevacid, and

erythromycin (added in august for its apparent anti-inflammatory

properties, its supposed to make the transition off of pred easier),

and my nasal sprays of astelin and atrovent. I have a single dorm room

(nice bonus!), so that I don't have to deal with a roommate's

potential triggers, etc... . I have to inform all of my professors and

friends and whatnot of my 'potential disasterous situations'and what

to do if I should have an attack, and I also have to inform the dining

hall of all of my food allergies, etc... . The first few weeks back

were a bit rough, as my pulmo decided to have no mercy and lower my

pred from 55mg every other day to 50mg every other day. That change in

the pred and apparently a bout with viral pneumonia increased the

inflammation in my lungs and apparently was just enough in combination

with an accidental but unavoidable run-in with cold-air, caused a

massive asthma attack a week and a half ago. I ended up doing 8

xopenex nebs over the course of 4 hours (all alone -- but while in

contact with my primary over the phone, and my mom was driving no

doubt 95mph to get to me but i'm an hour away from home -- i couldn't

get into contact with my pulmo and all my friends had their cell's off

b/c they were in class - it was a bad situation to say the least). I

had never had an asthma attack that bad, but strangely, was having

such a hard time breathing that it didnt even occur to me that the

attack was that bad, I became so tired of breathing that all I could

think about doing was going to sleep, which I was later told probably

would have resulted in me stopping breathing (not good). My primary

kept telling me to call 911, but I really didnt think it was that bad,

and stupidly didn't do so. By the time my mom arrived, my biggest

complaint was that I was tired, my mom had me page my pulmo and the

doctor covering for him told me to head to the nearest ER, that I was

in danger of respiratory failure -- ooops. At the ER, my blood

pressure was very low (100/60something -- with the theo and being on

pred so long i usually run quite high), and my sats, which as I said

before are usually 99-100, were 93. Despite all of this, the triage

nurse decided that I should wait -- and 3 hours later (not kidding), I

was finally brought back and at that point my sats were 89% and I had

no breath sounds from about a third of the way down my lungs on. The

ER doctor had me do 3 duonebs in a row and started IV solu-medrol (i

was not thrilled about that one because we were just finally getting

fairly low on the pred taper), and I eventually perked up a bit, but

they decided to admit me anyway because of my history. I finally was

able to get a hold of my pulmo the next day and based on the info i

gave him over the phone, he made the diagnosis of viral pneumonia

which altered the rate at which my liver was able to metabolize the

theophylline so as a result I was TOXIC on theophylline (my level was

28 - which apparently opened my lungs up more than a non-toxic level

would have, but as a result put a strain on my heart and made me

suceptible to seizures -- fun!), and the inflammation from the

pneumonia and the recent decrease in pred, and the cold air exposure

just set me up for disaster. I was in the hospital for 3 days on nebs

every hour, then eventually spaced to every 3 and then finally every

6. And I was on 30mg solu-medrol q6h throughout my stay. The doctors

at the hospital all marveled at the fact that I was a non-wheezing

asthmatic -- and when I relayed that info to my pulmo -- he was

like " well yeah, because you clamp down in your bases honey, thats

just what your lungs do -- you're not a wheezer! " . Anyway, my pulmo

wanted to get me back to the 50mg every other day with the pred ASAP

(which was a nice idea but very difficult to do), and wanted me back

to school ASAP (another nice idea), I went back to school last

thursday and my first non-pred day was last friday -- needless to say,

it was a ROUGH weekend -- going from 120mg pred/day to 60mg pred/day

to 50mg pred/every other day all over a period of 5 days is INSANE!

Today is a non-pred day and I see my pulmo this afternoon -- so we'll

see what my PFT's are (I do spirometry every time I visit him), I also

added a lovely junky cough to my package over the weekend so I'm

thinking the viral pneumonia may have gone bacterial -- which would

just be lovely, but we'll see. Anyway... if you've read to the end of

this, God Bless You! -- I'm sure you all have stories of similar

severity and whatnot, and I know that eventually I'll be able to look

back at this point in my life and be able to say that it was just a

bump in the road, but its been quite frustrating and i'm just sick of

it all at this point .... anyway... " this too shall pass " . Thanks

for reading, and by the way, still receiving Xolair every 2 weeks

throughout this process and my pulmo is convinced this all would have

been far worse without it -- I can only imagine!

<3 Meagan

>

> I have been using Xopenex in my neb for several years and now

> it is available in a pocket Inhaler. Has anyone else tried it yet?

> I just got one and it seems to work pretty good.

>

> Doug

>

February 7, 2006

Thank you for the very long but GREAT enlightening post

Doug

February 7, 2006

No problem, -- I didn't realize how long it was until I just re-

read... sorry about the heavy reading lol.

<3 Meagan

>

> Thank you for the very long but GREAT enlightening post

>

> Doug

>

February 7, 2006

Your ordeal was quite eventful. As I was reading your note I kept hoping

I would soon read all your problems were resolved and you were able to

do everything you wanted to do like attend school, etc.

I certainly understand all your frustrations and share all the ups and

downs you have experienced the past months. It is a real bummer when a

person is forced to live everyday wondering if and when an asthma attack

will begin. Beleve me, I know frightening it can be not being able to

breathe. There were times when I was unable walk from the front of my

house to the mailbox across the street and back without being able to

breathe.

After reading about all your experiences my troubles fade by comparison;

I feel very lucky. Fortunately, I am able to control much of my asthma

attacks with Foradil, Pulmacort and Albuterol (not used very much at

all.) I cough a lot and have to clear my chest and lungs often but as

long as I use the Foradil/Pulmacort and occasionally using the Albuterol

I am able to get around breathing reasonably well . There are only a few

times when I find it hard to breathe. However, I always wonder when and

if things will turn around for the worse. I am hopeful that the XOLAIR I

began a week ago will even make thing better.

I really hope you keep us posted on your progress. I truly want you to

get better and enjoy your life.

Thanks everyone.

________________________________

From: [mailto: ]

On Behalf Of meagainbenny

Sent: Tuesday, February 07, 2006 10:26 AM

Subject: [ ] Re: Xopenex HFA