Personal asthma story

[Guest guest]

I come from a long line of asthmatics... My mother, her father, his

mother... My uncle had it so bad that his family moved from

Illinois to New Mexico. That's what they did 60 years ago. That

and 'asthma camps'. Amazingly, my uncle more or less 'grew out' of

his asthma and was able to play college basketball. I was not so

lucky.

My asthma started when I was 12 but didn't get bad until I was 15

when it hit me like a ton of bricks. I went from being a

participant in basketball, track, cross country, and band, to a stay-

at-home. The first medications I was taking were theophylline,

brethine, vanceril, and albuterol, with the occasional dose of

prednisone when things got really bad.

Condition worsened through college, but I was able to keep it in

check mostly, although I had my first trip to the ER then. Got a

really good doctor when I moved to Michigan, and saw a lot of

improvement. Could also have been the environment (not a lot of

trees or grass, and the Detroit air pollution blew into Canada).

Had some problems while at graduate school in Charlottesville, went

to the ER again while in Kansas City. Moved back to NC in 1993 and

was in the ER within 6 weeks. This started a regular twice-yearly

series of trips to the ER (spring and fall) for the next several

years.

Started on Accolate around 1995 and then Singulair in 1997. This

worked great for me, but I had a REALLY bad reaction of some sort

that put me in the hospital for 10 days. Dr.'s won't conclusively

say if it was a result of the Singulair or not. They say it could be

a condition known as Churg-Strauss which is often present in

asthmatics but masked by taking prednisone and subsequently un-

masked when steroid use is discontinued. The result was an

extraordinary jump in my eosinophil count and massive fluid

accumulation throughout by body, particularly around the heart. For

those of you who are tapering your steroid dosages, I would suggest

you familiarize yourself with the symptoms of this condition, as it

can be fatal. I can share more details with you if you'd like, as I

have found that I now know more about this condition than many

doctors because it is very rare.

I've been on regular steroids since 1999, although now I am only

taking 20 mg every other day. My eosinophil count has not gone up

over that period. Naturally, my asthma was under control during

much of the early period (when I was taking 60 mg prednisone a

day). However, it seemed that when I tapered to 20 mg daily, I

couldn't keep my asthma under control.

Since I didn't want to take a chance with Singulair, I had to go to

other treatments. By then Flovent was on the market, and I started

using it - 440 mcg 4x daily. This worked pretty well, but really

tore up my throat - sometimes so bad I would totally lose my voice

for several days at a time.

After another year or so, Advair came along, and I started taking

that along with the Flovent. Still had seasonal problems, but at

least it was keeping me out of the ER.

Finally, last June I saw an article in USA Today about Xolair. Of

course I immediately contacted my allergist and my insurance carrier

about it, and the rest is history. I started on Xolair in August.

I'm trying to taper off the steroids completely, but proceeding with

caution. I did read that Omega 3 fish oil is good for managing

eosinophils, so I am supplementing with that. I see my Hematologist

again in May and we'll see how I am doing.

Xolair has definitely changed my life for the better. I am doing

things that I haven't done since I was 14 or 15 and generally feel

good almost all of the time, asthma-wise.

I haven't seen the marked improvement in my peak flows, though. I

have a digital meter that measures PEF and FEV1, as well as a

plastic peak flow meter. I always hit 650 on the plastic peak flow

meter, but can't seem to get my PEF and FEV1 readings up on the

digital meter. My allergist says that 26 years of asthma has

probably taken its toll on my lungs.

I'm just glad that if my son (soon to be SONS)inherits my asthma

that we can get him started on Xolair so that he can maintain a

normal life.

BTW - I take 300 mg of Xolair once monthly.

Glad this forum is here.

Greg