Ferriprox-exjade combination therapy

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Offline Lena

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Re: Ferriprox-exjade combination therapy
« Reply #60 on: January 24, 2010, 06:20:58 PM »

Zaini,

my guess is that you should equally split the doses....is it too difficult to get 100s from Novartis?


Lena.

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Offline Ironman

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Re: Ferriprox-exjade combination therapy
« Reply #61 on: January 24, 2010, 11:06:40 PM »
All this splitting got me wondering, what about Ferriprox?

It's just that everyone is talking about splitting Exjade, and aren't really talking that much about Ferriprox.

(Im 2 lazy to search, in case someone already wrote about it :p)
Fight yourself, before you fight others!

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Offline Andy Battaglia

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Re: Ferriprox-exjade combination therapy
« Reply #62 on: January 24, 2010, 11:32:33 PM »
One problem with Ferrprox and this is pretty big, is that it isn't approved in North America. For those with access, it is not always the best chelator for their case. All chelators have side effects and there are those who still cannot find a suitable chelator and have to deal with significant side effects. This is a major reason we still need more chelators. Starch desferal would solve the side effect issues for many patients and make chelation much easier for many people, but there is no money going to support this drug's journey to approval. I still feel very strongly that no chelator works as well as Ferriprox in removing iron from the heart and brain and that there is no excuse for it not being approved in the US, but I am not the FDA and I am also not a corrupt bureaucracy that responds to the big pharmaceutical companies, while suppressing drugs from small companies. Am I saying the FDA is corrupt? Did the sun rise this morning? Do I see ad after ad on television, promoting drugs that have serious side effects, including suicidal actions and death? Do I wonder how these dangerous drugs are approved for things like birth control and stopping smoking, while also posing a risk of death? Yes, I do wonder how the FDA approves these drugs, yet leaves thal patients to die, because the company making Ferriprox just isn't one of the big guys.

And just a point of information; Ferriprox is split into 3 daily doses.
Andy

All we are saying is give thals a chance.

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Offline Ironman

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Re: Ferriprox-exjade combination therapy
« Reply #63 on: January 24, 2010, 11:57:32 PM »
I wonder if Starch desferal would run into the same kind of approval-trouble as Ferriprox is in, if it even reaches that far!
Fight yourself, before you fight others!

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Offline Lena

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Re: Ferriprox-exjade combination therapy
« Reply #64 on: January 25, 2010, 05:04:26 AM »
Ironman,

The only reason I have not mentioned ferriprox in detail is that I have been taking ferriprox for the last 7 years and it is something of a routine to me now. As Andy, I strongly believe ferriprox is the most necessary chelator nowadays, for after its circulation deaths due to heart problems have been diminished between thals. It is a pity that some of the thals cannot benefit of such a good drug or that some others experience side effects and cannot take it.
Exjade is the newest chelator and we are all still learning. If you ask me, exjade alone is not much success and it would be better to combine it with ferriprox or desferal. Of course, this is only my opinion. And yes, ferriprox is split into 3 -not necessarily equal- daily doses.
What is your chelation schedule?

Lena.
« Last Edit: January 25, 2010, 05:11:36 AM by Lena »

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Offline Zaini

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Re: Ferriprox-exjade combination therapy
« Reply #65 on: January 25, 2010, 09:58:41 AM »
Zaini,

my guess is that you should equally split the doses....is it too difficult to get 100s from Novartis?


Lena.

I don't think it should be,i'll ask them next time i buy Asunra.

Zaini.
^*^Xaini^*^

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Offline Ironman

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Re: Ferriprox-exjade combination therapy
« Reply #66 on: January 26, 2010, 03:25:14 PM »

What is your chelation schedule?


Desferal & Ferriprox... And loving every minute of it!
Fight yourself, before you fight others!

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Offline Lena

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Re: Ferriprox-exjade combination therapy
« Reply #67 on: January 26, 2010, 03:33:23 PM »



I  am  glad you enjoy it...especially the desferal part!      :rotfl


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Offline Ironman

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Re: Ferriprox-exjade combination therapy
« Reply #68 on: January 26, 2010, 09:52:51 PM »


I  am  glad you enjoy it...especially the desferal part!      :rotfl



How can you not love it!

Ever heard of a person dying of a tiny needle? (Ok, they do it in prisons in USA, but that's cheating!)
Fight yourself, before you fight others!

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Offline Andy Battaglia

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Re: Ferriprox-exjade combination therapy
« Reply #69 on: January 27, 2010, 12:33:12 AM »
I have heard of people dying from not using that tiny needle.
Andy

All we are saying is give thals a chance.

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Offline Ironman

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Re: Ferriprox-exjade combination therapy
« Reply #70 on: January 27, 2010, 12:42:52 AM »
I have heard of people dying from not using that tiny needle.

Oh I know you love 'em too Andy...
Fight yourself, before you fight others!

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Offline Andy Battaglia

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Re: Ferriprox-exjade combination therapy
« Reply #71 on: January 27, 2010, 01:09:08 AM »
The difference in attitude can mean everything. Kocher, as long as I've known you, you have been quite confident about your abilities and have kept a good attitude towards life. The trade off of a little needle prick, balanced against life itself is a no-brainer for one with your attitude. But for those who can't see the positive and see no real life for themselves, that little needle becomes a daily dagger that they choose not to jab into their body and extend what they feel, is a worthless life. I hope our group can make a difference in shifting people more towards this attitude that it's a just tiny needle.
Andy

All we are saying is give thals a chance.

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Offline Ironman

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Re: Ferriprox-exjade combination therapy
« Reply #72 on: January 27, 2010, 02:04:00 AM »
A simple way of shifting people's attitude is telling others what thals have reached so far.

Maybe people could share(in another thread) what they have done despite the needle.

Some of the great people in here weren't born great or smart or strong or funny ect, but are normal persons who wouldn't let thal stop them in reaching their goals/dreams.

All thals can be great, why not give yourself a chance?
Fight yourself, before you fight others!

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Offline Lena

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Re: Ferriprox-exjade combination therapy
« Reply #73 on: January 27, 2010, 05:11:05 AM »

Maybe people could share(in another thread) what they have done despite the needle.



Kocher,

that is a good idea. Why don't you start this thread yourself and see if others follow...

Lena.

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Offline Ironman

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Re: Ferriprox-exjade combination therapy
« Reply #74 on: January 27, 2010, 09:25:56 AM »

Kocher,

that is a good idea. Why don't you start this thread yourself and see if others follow...

Lena.

Hehe I am good at giving ideas, not bringing them to life... :P
Fight yourself, before you fight others!

 

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