10th December 06:44
Xolair report (hallucinations)
I am a lifelong severe steroid dependent asthmatic; essentially you
name a treatment for asthma and I have failed it for various reasons.
By national guidelines, I believe I am supposed to be living in the
ICU<vbg>. At any rate, a prime candidate for Xolair.
For those who don't know; you need to have IgE levels measured, a
positive skin test indicating you are allergic (to something, they
don't care what) and essentially not be in control of your asthma on
standard therapy in order to get the drug. Access to the drug is
controlled somewhat by the manufacturer, like most new injectables,
and different insurance companies handle it differently. Cost runs
from $600-$1200/month US depending on how much you need. Your dose is
determined by a formula based on your weight and IgE levels, however
if you are on long term oral steroids your IgE levels are probably
messed up, so there is some guess work about the dosing as far as we
(my pulmonologist, allergist and I) can tell.
So now to the part you have all been waiting for: I am pretty much a
poster child for the the drug: I had an immediate huge response to the
drug. I am not off my oral steroids but the doses are down
significantly while my peak flows and FEV(1) remain (gasp) almost
Roughly 12 hours after my first injection, at about 3am I woke up
feeling something was horribly wrong; turned out I could breathe.
Within 48 hours I went from a peak flow of less than 150 to 300+ and
when I went in for PFTs to confirm my hallucinations my FEV(1) went
from .89 to 2.49. ( I am 5'1 and 250)
I have basically held those numbers for three months while cutting my
oral steroid in half...the numbers have actually improved a slight bit
as time has passed.
Over the months I have been on the drug my response pattern has
definitely changed; I am no longer hyper-responsive to small insults.
The Xolair does nothing for viral and sinus triggers, so of course
I am also on IgG therapy for the asthma and we will see just how good
the Xolair is when we start tapering the IgG. My pred dose is now down
to 20 mg a day and will sit there for a bit while I adjust. Pred taper
was slow due to a couple of viral illnesses.
Side effects have been minimal, I think: I have had one unusual
bacterial infection in a finger and I usually have a headache for
about an hour after the injection, but tylenol takes care of it. Well
worth the trade off for me at least.
It will be interesting to see how the drug works for others.
26th January 22:12
Xolair report (autoimmune)
It's good to hear of someone's experience, as I start my injections next week. I had an IgE of over 1200 (yep, not a typo), and also have Sjogrens (had to have salivary glands removed on one side, it's so bad), RA, Hashimoto's, and Celiac Sprue.
Out of all the autoimmune diseases, the asthma that is triggered by all the above is probably the worse, although having Hashi's and med's titrated upwards always kicks a big trigger at me.
I will post back after my first few injections and also let you and others know of my experiences. Thanks for the input...I'm not as frightened now....lol.