Hypereosinophilic Syndrome Treatment

Updated
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?

3 Replies

Earliest Newest Votes
1
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?

https:/­/­www.medschat.com/­wiki/­Mepolizumab/­

Was this helpful? 0
2
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....

Was this helpful? 0
3
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...
Thankyou.

Was this helpful? 0

More Discussions:

Irritable Bowl Syndrome Treatment

My wife, aged 73 years, has been ailing with diarrhea dominated IBS for the past 4 years. The consultant has prescribed ...

3 REPLIES
defcort 30mg instead for treatment of nephrotic syndrome

my son 4 yrs old is suffring from nephrotic syndrome. before he was being treated with 10mg omnacortil which is a steoid...

2 REPLIES
Severe Spondylosis With Left Hand Carpal Tunnel Syndrome What Is Your Advised Treatment

I have been suffering from sever spondylosis with numbness in the fingers. The treatment advised was traction and pain k...

1 REPLY
Treatment For Kentucky Pain Patients

Is there any chronic pain patients from Kentucky or Ohio that are finding themselves with no treatment and no where to t...

15 REPLIES
treatment from the side effects of dexona and practin

I am Rohit suffering from the side effects of dexona and practin and now I'm facing the problem of pimples in my who...

12 REPLIES
Treatment age factor

Hi I'm in Australia ,hvc pos geno 3,63yrs old I have mild emphasemia I am worried about side effects at my age breat...

6 REPLIES
Treatment for bladder infections

I have a bladder infection and want to know what the best antibiotic to use would be that doesn't have lots of side ...

6 REPLIES
TREATMENT ON ASHTMA

My wife has asthma since her childhood. At present her age is 49. She consumes tablet TEDRAL SA and DERIPHYLIN (Plain). ...

6 REPLIES
Treatment For Loose Motion

i am having loose motion since last 5 days(3 -4 times a day) ,even i am taking norflox-TZ,sporolac powder medicine daily...

5 REPLIES
Treatment resistant depression

For 40+ years I have battled bipolar illness.. been through all meds, many ect, rTMS. and clearly dealing with trd... Ho...

4 REPLIES