Symptoms, Xolair possibilities (rambles)

October 29, 2008

Hi Everyone,

Saw my pulmo yesterday. Of course, my lungs were clear as a

bell she said after I got in there. At home, a few hours earlier as

I was picking up and making the bed I had to use Advair as my chest

felt tight. I thought she said something to the effect that this

could happen - i.e., that it can apparently seem to be an on-and-off

disease. Last week I had a bad episode of " loopiness " - stumbling,

dizziness, extreme nervousness, feeling drugged (I was not drugged)

and fell asleep for 3 hours in the afternoon without apparent cause.

I got the impression it might be part of the disease or perhaps

caused by Allegra or an interaction. I do not do well on

antihistamines. It's not Xolair because I haven't been on it for 4

months ... unless Xolair can have some sort of longer term effect.

I've been diagnosed with asthma, allergic broncho pulmonary

aspergilliosis and copd. I'm *not* on steroids either except for the

inhaled kind from Advair.

Re Xolair ... I went off it 4 months ago when Genentech and my

pulmo claimed it was mandatory that I go to an infusion center. The

place was dirty, the staff incompetent (the pharmacist gave me

incorrect instructions on how to use an epi pen) and the shots really

hurt. It was $$$ and 3 hours in the nasty place. I quit.

The pulmo said she felt it really had done me some good (the

pulmonary function tests showed an improvement and my sinuses

definitely improved) and she was sorry that they came out with the

black box warning. So was I. However, even w/black box warning I

still was a happy home injector for 1-1/2 yrs.

We had a friendly chat - she wants to try to get me reinstated

on Xolair. Of course, I will not have it done in an infusion center

(which she understands) so it would have to be at home. I wonder why

they don't consider having something like phone calls to make sure

the drug is stored properly or even some sort of cam set-up so they

can watch the patient (by remote) inject or ask for a written plan of

who will be with the patient? It seems like more could be done than

just a knee jerk reaction. Somehow, I suspect that if a doctor has

enough power, knows the patient is competent, and knows that the

patient won't do it any other way, that there might be some sort of

willingness to allow home treatment. For now I guess I'm in " wait "

mode.

Happy Halloween!

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