Re: Re: xolair for atopic dermatitis/pft test

March 5, 2009

the lack of B vitamins is interesting. Glad the extra doses helped! I have had

only minor rashes in the crease of the knees which usually went away after a few

days with no treatment. Other than that, I have not had skin problems. But my

sister, who was a severe asthmatic had rashes growing up, but I think those

subsided as she got into her twenties...not the asthma, though.

I would like to mention that I had one of those extensive PFT's at the hospital

lab today. I had one done the summer before I started xolair My lung capacity

has improved only slightly. The xolair has helped me in that I have had only

one respiratory infection in three years caused by severe sinus rhinitis, caused

by high counts of mountain cedar, and exacerbated by undue stress due to a death

in my family. BUT, and this is important to me, while I had to have an

antibiotic shot, I DID NOT HAVE TO HAVE PREDNISONE! So I have been prednisone

free for three years!

Just taking the test was an education in itself as this technician shared with

me his knowledge of COPD's gained over 20 years of testing lung functions for a

variety of reasons.

In a way it was disappointing that my lung function hasn't improved

considerably, but in another way I expected not much change since the clinic

does a pft each time I go in for my xolair shot, and my pft is pretty consistent

unless I am having some difficulty.

The mystery is why I have lung damage--I never smoked, and was exposed to second

hand smoke only when I worked in retail during the summers of my college years

(before the smoking bans in businesses!) I have never had injury to my lungs

nor have I ever had surgery where the lungs would be affected. Goes to show all

over again that each one of us responds differently but we all have some of the

same problems: i.e. difficulty breathing without medications.

My husband continues to be amazed that more progress has not been made in the

last twenty-five years in the treatment of asthma. Even with xolair, which is a

blessing we both appreciate, there still seems to be so little help for some of

the severest cases. Maybe one day.......soon we hope, there will be a

tremendous break through not only in the treatment, but in a possible cure!

From: instdesgn1 <instdesgn1@...>

Subject: [ ] Re: xolair for atopic dermatitis

Date: Thursday, March 5, 2009, 3:54 PM

I tend to be an " itchy person " too. For about 18 years or more I would develop a

rash, usually on my lower leg, that become scaley and red and itch intensely. Of

course I scratched it raw but coritzone creams and even oral steroids didn't

help much. The non-specific or atopic dermatitis rashes lasted for as long as 5

years and even after biopsy the docs didn't know what to do. At least nothing

worked. One derma told me to wrap up my leg with plastic wrap at night after

putting coritzone cream on (someone else mentioned that on this thread). He said

at one time they put people in the hospital for 2 weeks, wrapped them completely

in wet cloths and kept them wet.

Just walking past a plant or fern would trigger a rash. My IgE was 409. Also,

sometimes my forearms itched intensely even though there was nothing there - it

was like something was just under the skin.

About 4 years ago (before I started Xolair) a neurologist discovered I have

absolutely no trace of Vitamin B6 in my blood. He explained (it's long and

complicated and I don't fully understand it) that I don't have the enzymes that

allow me to absorb B6 from food or regular B vitamins. He gave me a prescription

for a very high dose of B6, B12, and folic acid together in one pill. It was

something my body could absorb. I noticed that the intense long-term rashes went

away and haven't come back.

I was on Xolair for 1-1/2 years so don't know if that had anything to do with it

getting better. If I sit on the ground or a rock or get into poison ivy I'll end

up with a rash for a few days but nothing like I used to get.

> >

> > Thanks for all the information. Your AD sounds a lot like my daughters.

> > the xolair sounds promising,,, I'd take 30-40 % at this point. Did it help

the itching this much or just the rash and red skin? My daughters skin is

extremely itchy even when her skin inst broke out, although her skin is always

red. the ointments dont really help her,,she is allergic to two different groups

of the topicals and ones in the other groups dont seem to help. She reacts the

same to prednisone as you. it helps at first but she rebounds when she goes off.

I am hoping whatever we decide to use will kick in before the rebound happens,

but that will mean keeping her on prednisone longer than I want to.

> >

> > The aterax doesn't really help with the itching, it just makes her really

tired and helps her sleep. She alternates between that and benadryl every month

or so, Doxepin didn't help her. We haven't tried the bleach baths but I have

read about them helping with staph infections, something to considered.

> > >

> > My daughter is covered under our ins. for one more year so if we are going

to try it this would be the time. If it helps a great deal we will have to

figure on how to pay it after her coverage starts.

> >

> > just a couple more questions if you dont mind.

> >

> > What was your IgE level when you started? did you have any side effects when

started xolair(or after)?

> >

> > thank you for all your help. jean

> >

>

March 6, 2009

Your technician in my non-medical but common sense opinion should have stopped

the test if you began to be dizzy. My technician was wonderful and only did the

tests that were absolutely necessary. The gas they use to test the diffusion

and total lung capacity did make me a little sleepy, but not loopy or dizzy. In

fact the technician kept very close watch on the monitor and kept asking me how

I felt. He had been doing this for about 20 years, so he knew what he was

doing. I had it done in a hospital lab where my pulmonologist is on staff--they

all know her very well! That might have had someting to do with the way I was

treated. The lab also had the very latest pft computer/machine--not the great

big box I remember.

From the very beginning of my appointments and tests with the pulmonologist, she

told me that I only have 30% plus (the highest has been 40) lung capacity. I

asked her what could have damaged my lungs and her response was she didn't know,

but untreated asthma could have played a big part--in other words, I had asthma

long before I finally sought treatment for it. That's the only answer she could

come up with and it coincides with what I have read. There really is no other

possible explanation.

Needless to say, I made my daughter and son get treatment when I realized they,

too, had symptoms of asthma.

From: instdesgn1 <instdesgn1@...>

Subject: [ ] Re: xolair for atopic dermatitis/pft test

Date: Friday, March 6, 2009, 2:15 PM

Adah, I'm curious about your experience with the pft. I considered them to

border on torture! Finally learned, just before I quit altogether that I could

refuse to go on with the test since I was so dizzy and felt so bad for quite a

while afterward. In fact, I can remember leaving the building still feeling

" looped " and certainly should not have been driving right then. One time the

tech forgot to turn on part of his machine and by the time I repeated parts of

the test 3 times extra my chest was even more inflamed and I was actually

tasting blood.

Ironically, though, on Xolair my pft's did improve by something like 18 points I

believe. I went from the mid 60s to I believe it was the mid 80s. That's why

they considered Xolair a success and I did have less asthma and eventually a

reduction in headaches of say 85%. Strangely, my very last test 9 months ago

which was not as thorough showed my lung function was actually a little bit

lower (worse) than BEFORE I started Xolair which was odd. Perhaps I had a cold

or maybe I developed " tolerance " to Xolair or perhaps lung function changes from

time to time for reasons not explained - like changes in IgE. Since quitting

Xolair 9 months ago the asthma has returned full force as have the sinus

headaches.

I have never smoked either, nor did my parents nor my husband so like you the

only smoke I experienced was before it was pretty much banned from public

places. I too have COPD. So, if you're feeling better (good job!) there must be

some change that they don't know how to measure - hope they figure that out some

day for the sake of all of us! It would help to develop more accurate testing

and treatments.

Thx for reporting your experience.

> > >

> > > Thanks for all the information. Your AD sounds a lot like my daughters.

> > > the xolair sounds promising,,, I'd take 30-40 % at this point. Did it help

the itching this much or just the rash and red skin? My daughters skin is

extremely itchy even when her skin inst broke out, although her skin is always

red. the ointments dont really help her,,she is allergic to two different groups

of the topicals and ones in the other groups dont seem to help. She reacts the

same to prednisone as you. it helps at first but she rebounds when she goes off.

I am hoping whatever we decide to use will kick in before the rebound happens,

but that will mean keeping her on prednisone longer than I want to.

> > >

> > > The aterax doesn't really help with the itching, it just makes her really

tired and helps her sleep. She alternates between that and benadryl every month

or so, Doxepin didn't help her. We haven't tried the bleach baths but I have

read about them helping with staph infections, something to considered.

> > > >

> > > My daughter is covered under our ins. for one more year so if we are going

to try it this would be the time. If it helps a great deal we will have to

figure on how to pay it after her coverage starts.

> > >

> > > just a couple more questions if you dont mind.

> > >

> > > What was your IgE level when you started? did you have any side effects

when started xolair(or after)?

> > >

> > > thank you for all your help. jean

> > >

> >

>

March 7, 2009

Both PFT and FEV1 numbers fluctuate from day to day and even intraday.

Factors which can effect these numbers are:

1) illness

2) infection

3) exposures to chemicals

4) allergies

5) use of albuterol, xopenex, and other nebbed solutions, prednisone, etc.

6) fluctuations of the machine and the tech

7) patient technique--are you just puffing into the tube or are you blowing as

hard and as fast as you can?

8) barometric pressure

9) air trapping within the lungs

10) physical conditioning

I have a portable electronic flowmeter and depending upon how I am doing, my

FEV1 can be 1.4 one day and up to 3.2 a few days later.

Xolair is but a part of my treatment plan and no one test shows how that your

are doing. My FEV1 can show 2.8 yet I am very congested, tight and SOB. The

doctor, nurse, PA should be smart enough to realize there are a multitude of

factors and illnesses which contribute to breathing problems.

Lee

________________________________

From: instdesgn1 <instdesgn1@...>

Sent: Friday, March 6, 2009 3:15:22 PM