Help Paying for Meds. Must be imported VERY$$$$

• By trygva
• Posted November 19, 2006 at 8:21 am
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What is the name of the drug? Or is it not named yet and only a forumla number in the clinical study?

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• By blackbirdsings
• Posted November 19, 2006 at 1:25 pm
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The name of the medicine is C1-INH. It's been used in Europe for over 30 years and is in the last stage three trial to get approved here.

You can only get it in a study OR import it for the VERY hefty price I mentioned earlier.

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• By RobynM74
• Posted November 19, 2006 at 8:52 pm
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Hi there. I read your note with interest. I have been unable thus far to get diagnosed as HAE. I have frequent swelling to my subcutaneus facial tissues with no hives (and no alllergic reaction). I am DESPERATE to join a clinical study group. My DR. said it was idiopathic. I've provided digital photos that show the dates *& times (which indicate how quickly it comes on) and the DR. said my blood test did not show that I was deficient in the C1 inhibitor, there not diagnosed as HAE which prevents me from participating in any studies. How long has this affected your life and what has your experiences been? Thank you. I apologize for this lengthy response to your post.

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• By blackbirdsings
• Posted November 19, 2006 at 10:35 pm
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Welcome to the world of having edema and doctors not wanting to deal with it!

You may actually have HAE and your doctor may not be aware of all the types of it, and all the tests to run. Please go to this website http://haea.org There is a chart that lists all the type of HAE and explains symptoms, etc. for it. You can also email the HAE Assoc. at that website and they can direct you to doctors that treat HAE near you AND clinical studies.

The studies will evaluate you and "prove" that you do or don't have HAE. You can get yourself into a clinical study and do not have to have permission from your doctor. Just see if it would work for you and let your doctor know you are going as a courtesy.

With HAE you do not always have hives, if you did it would be called uticaria. Idiopathic or not, you may still need treatment. I have found doctors that don't want to deal with HAE will tell you, you are normal no matter how swollen you are, or how well documented the swelling is complete with dates, times, and measurements.

Get your bloodwork ASAP!!! I was very ill and couldnt get out of bed, mega swollen and got taken to the doctor. They did labs and swore it was all normal. That was over three years ago, and it turns out it was positive for HAE.

I had one doctor tell me I was vain and perfectly fine and my legs were HUGE. Not to mention that I had bloodwork showing I have HAE.

I have been sick for seven years and got diagnosed a few weeks ago. I thought I had this and so did my doctor. One other doctors opinion confirmed this, along with my labs. We are going to get some more extensive testing done, but I do have HAE. Even one of the top drs for this said so, when he heard about my case.

For the past two years I have been very sick and get worse all the time. I currently have an infection and get sick ALOT due to untreated HAE. I haven't been able to finish school or work during this time. I have to be taken care of by my family and am unable to do alot for myself...Such as fixing meals, laundry, grocery shopping, etc. I wear out very quickly and the edema gets so bad, that I am miserable and in bed for 3-4 days after I do anything. I swell even if I am in bed, but usually not as bad as if my body is "stressed" by having to do something. I am in constant severe pain from the edema-that limits me doing things too.

My experience has been a really rough one, and I have been treated horribly by the majority of the medical community. I finally have a medical team working with me, that actually cares about me and believes me.

I am not able to do a study at this point due to a few medications I am on. There is so much more to my story, but I think you get the idea. I also have bouts of being anemic and I have a condition that causes me to pass out, so I almost pass out everytime I change positions.

Get your COMPLETE MEDICAL RECORDS. (this is a legal right you have, keep them in a notebook and take them to drs appointments with new drs you see)
Contact HAE Association
Have them help you find doctors and studies near you
Get a full evaluation by somebody that does TONS of HAE
Go from there...
In the meantime, learn about your options for medications and what the side effects are, etc.

Good luck to you! If you have more questions just send me a message. HAE is pretty nasty and alot of doctors say its not possible for a person to have it, just because its rare.

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• By kali
• Posted January 1, 2007 at 2:17 pm
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HEllo,
Something like this sickens me to hear.
My sympathy to you and I mean that in a strong way.
Have you tried the actual drug company who makes the drug. i was not too clear in who is the maker.
I know there are a lot of drugs that the company will give to you if you cannot afford them or at least at a minimal cost.

You said you have no income. Could you try for medicaide/state insurance and health care? You could do that through human servises in your town.

Have you looked for a foundation that can help? Or others who may have the disease so a foundation could be started.

I know Larry King and Montel Williams both have foundations. Montel for the MS and Larry for heart disease. Now with Larry, he has said many times to contact his foundation if your insurance will not cover heart disease and the foundation will pay. So maybe you could contact him to see how to go about starting a foundation for this disease.

Also there is the extreme and that is senate hearings if you can get enough people. It would not have to focus on just this disease. It could be many and it would be telling them that you cannot be treated. You are not being treated equally. The president has nothing to worry about now does he??????
I'll end it at that.
kali

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