Hypereosinophilic Syndrome Treatment

Scotty Says:

I have had HES for 12 years and want to trial Mepolizumab. My specialist has been unable to get me on a trial. What avenues do I have?

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Verwon Says:

It is really entirely up to the criteria set by the testing agencies and manufacturer, if they don't think you fit the patient profile, then they have the right to refuse you from their clinical trials and, unfortunately, you have no recourse in most countries.

It's not the same as if someone were denying you a treatment options that has actually been proven to be life-sustaining.

What reason did they give for not letting you into the trials?


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Scott Says:

Thanks for your reply Verwon. In a nutshell, I didn't qualify for the trial because my death is not imminent. I have some control using hydroxyurea although the side effects depress all blood cell reproduction (so I am anemic, neutropenic etc) & can eventually cause heart failure.
I agree a trial is at GSK's discretion. The drug has orphan status & I am told it will never be available commercially. I guess I don't care how I get the stuff but I would really like my specialist to be able to put me on a course. Ever hopeful....

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Antos Says:

Dear Scott,
I read now your message because my husband has the idiopatic hypereosinophilic syndrome from 1 year and the three terapies ( cyclosporine, glivec and hydroxyurea ) are no effects and he's waiting to receive Mepolizumab from USA to Italy but they do not respond. My husband take 25 mg of cortisone and anyway 50 mg. Do you use Mepolizumab now?I hope yes...

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