Fw: HER

[Guest guest]

At my request a friend of mine emailed this to me. I was wondering if anyone of

you has heard of this disease and if perhaps it would be related to

environmental issues. Thanks a lot cathy

Hi ,

 

This is what doctors think I have:

 

Hyper Eosinophilic Syndrome

 

HER is a disorder characterized by excessive numbers of eosinophils, a type of

white blood cell made in the bone marrow, which accumulate in the blood. An

increase in eosinophils is most commonly caused by an allergic reaction and

therefore the use of steroids to decrease their over-production. However, in HER

eosinophils multiply in an uncontrolled manner, attacking numerous paarts of the

body, including the heart, lungs, gastrointestinal tract and skin.

 

Treatment ususally involves the use of petentially toxic medications to stop the

overproduction of EOS like Gleevec an leukemia drug and Interferon. However,

current treatments only provide limited control and quickly become ineffective.

There is a new drug, still under clinical trial, by GlaxoKline labs, which

is an anti-Interleukin-5 therapy showing promising results with less side

effects as it blocks the over production of EOS. The name is

Bosatria(mepolizumab). Unfortunatly the clinical trial is not accepting new

patients and the FDA has some objections before the approval of the drug.

 

I am currently taking the equivalent of 10mg of Prednisone in the form of

Hydrocortisone(Cortef) which is a weaker drug and supposedly has less side

effects. It does control the EOS, but my lungs are not well, therefore I have to

use Azmacort inhaler and Brethine in pill form to open the airways once or twice

a day.

 

There is also a possibility that I would have an even more rare disease called

Churg-Strauss syndrome, which starts as severe allergies and sinuses

involvement, then acute asthma and the 3rd stage involves various organ systems,

like heart, kidney, liver, skin and nerve pain in legs, arms and hands with

numbness and tingling and severe weakeness of the extremeties.

 

I have chronic sinusitis, asthma and already had congestive heart failure but my

heart is back to normal. I haven't had any kidney problems or liver, but I do

have numbness and tingling in hands and feet and a lot of night sweats that get

worse when I eat certain foods or take certain supplements like Betaine

Hydrochloride.

 

I pray to God that I don't have the last one, because it seems worse than HER.

 

Thank you for your interest in helping me!

Vani