Poll: Which iron chelator do you use?

  • 42 Replies
  • 38521 Views
*

Offline Danielle

  • Beta Thal Major
  • *****
  • 848
  • Gender: Female
Poll: Which iron chelator do you use?
« on: February 11, 2006, 06:27:54 AM »
All votes are anonymous, so if you would like to add something to your vote, please reply below.   :biggrin
« Last Edit: February 22, 2006, 07:39:31 AM by Danielle »

*

Offline Ayesha

  • ***
  • 174
  • Gender: Female
    • Ayesha's Blog!
Re: Poll: Which iron chelator do you use?
« Reply #1 on: February 11, 2006, 06:05:53 PM »
Desferal + Ferriprox

Desferal: 4 vials per day, twice a week
Ferriprox: 2 + 2 + 2 , five days a week

Today I got checked my Ferritin its 1067 :$
-Ayesha

*

Offline Danielle

  • Beta Thal Major
  • *****
  • 848
  • Gender: Female
Re: Poll: Which iron chelator do you use?
« Reply #2 on: February 12, 2006, 12:04:39 AM »
Hi Ayesha!   :biggrin

Which drug is Ferriprox?  Is it a totally different drug, or is it one of the ones I mentioned above, but with a different name?   :huh

If it's a totally different drug, I'll update the poll.

How are you doing with the Ferriprox?  Any side effects?

Your ferritin isn't bad at all, but lately I'm not too thrilled with ferritin levels, since I've been told that the ferritin doesn't tell you how much is actually stored in the organs.  My ferritin is 1500, but I'm not convinced that it's not a lot higher in my organs.  I think I'm going to get that liver scan done soon.  I'm scared to find out what the results are, though.  :sadyup

*

Offline Smurfette

  • ***
  • 242
  • Gender: Female
  • Me and my Goddaughter
Re: Poll: Which iron chelator do you use?
« Reply #3 on: February 12, 2006, 12:39:07 AM »
 :hithere

I use desferal two times a week and Ferirprox 7 days a week...My ferritin is 700 at the moment..I have been on it for about a year now and no side effects what so ever...

Ferriprox Danielle is L1 another name for it...its also known as Deferiprone...Hope this helps you out!!!

 :bighug

Take care
 :cheer

*

Offline Andy Battaglia

  • *****
  • 8793
  • Gender: Male
  • Will thal rule you or will you rule thal?
Re: Poll: Which iron chelator do you use?
« Reply #4 on: February 12, 2006, 12:43:14 AM »
And just to confuse things a bit more, L1 (deferiprone) is also known as Kelfer, which is made by Cipla, in India. All are the same oral chelating drug.

Andy

All we are saying is give thals a chance.

*

Offline Danielle

  • Beta Thal Major
  • *****
  • 848
  • Gender: Female
Re: Poll: Which iron chelator do you use?
« Reply #5 on: February 12, 2006, 01:03:37 AM »
Hi Smurfette!  :wave  Thanks for the info!   :biggrin

Thanks to you also, Andy.  I wasn't aware of that either.  I updated the poll and the board title. :)

*

Offline Ayesha

  • ***
  • 174
  • Gender: Female
    • Ayesha's Blog!
Re: Poll: Which iron chelator do you use?
« Reply #6 on: February 12, 2006, 09:45:33 AM »
Hello Dianelle :)

am doing great with Ferriprox and as Andy told ya its Kelfer and L1, they are available in Pakistan with the name of Ferriprox heh, too much confusion :D, I didnt have any side effect Thank GOD, doctors have been checking out the WBCS, RBCS and all... I dont know about Organ Ferritin :$
-Ayesha

*

Offline Danielle

  • Beta Thal Major
  • *****
  • 848
  • Gender: Female
Re: Poll: Which iron chelator do you use?
« Reply #7 on: February 12, 2006, 10:02:51 AM »
Ayesha, I'm so glad to hear that you haven't gotten any side effects from the Ferriprox.   :biggrin

How many pills do you take each day?

I wish the doctors over here in New York were in favor of prescribing the oral meds.  I would really like to try it.   :(

I can't stand all these painful lumps I get with the Desferal.  I think I may have to get my mediport put back in, so I can do it intravenously again.  I'm running out of places to do subcutaneous.  :sigh

*

Offline Ayesha

  • ***
  • 174
  • Gender: Female
    • Ayesha's Blog!
Re: Poll: Which iron chelator do you use?
« Reply #8 on: February 12, 2006, 10:13:50 AM »
I take 6 tabs per day and I take it for 5 days a week, that makes 30 tabs per week :)!
-Ayesha

*

Offline Danielle

  • Beta Thal Major
  • *****
  • 848
  • Gender: Female
Re: Poll: Which iron chelator do you use?
« Reply #9 on: February 12, 2006, 10:23:25 AM »
Are the tablets big?  Hard to swallow?

Sorry I'm asking so many questions.  I'm a curious one.   :biggrin

*

Offline Ayesha

  • ***
  • 174
  • Gender: Female
    • Ayesha's Blog!
Re: Poll: Which iron chelator do you use?
« Reply #10 on: February 12, 2006, 10:27:48 AM »
Nopes not at all, they are medium in size and I think the most best feature is that its Better than pumps and injection :D heh!!

And please dont be sorry, we all are here to acknowledge people and ourselves with the best knowledge of cure and treatment :)!

cheers!
-Ayesha

*

Offline Danielle

  • Beta Thal Major
  • *****
  • 848
  • Gender: Female
Re: Poll: Which iron chelator do you use?
« Reply #11 on: February 12, 2006, 10:35:39 AM »
Yes, that is definitely the best feature!  I wouldn't care how big those pills were, even though I gag easily. :rotfl   I'd throw my pump out in a heartbeat if I could take those pills and they worked for me.  I've just never seen them before, and was curious to know how big they were.  I've been told that they are huge, but they could've changed by now.   :biggrin

And I'm glad you don't mind the questions, because I'm sure I'll think of more!   :crackup

I'm so glad we have such a great group of people.  I hope none of you will hesitate to ask me anything if needed!   :grin

*

Offline Ayesha

  • ***
  • 174
  • Gender: Female
    • Ayesha's Blog!
Re: Poll: Which iron chelator do you use?
« Reply #12 on: February 12, 2006, 10:41:51 AM »

And I'm glad you don't mind the questions, because I'm sure I'll think of more!   :crackup

I'm so glad we have such a great group of people.  I hope none of you will hesitate to ask me anything if needed!   :grin

LOL! and i will be glad if i can help ya guys :)!

hmm Yeah we are blessed with great peoples on this community :)! I wont hesitate to ask ya anything :P if you dont hestitate too :D
-Ayesha

*

Offline Danielle

  • Beta Thal Major
  • *****
  • 848
  • Gender: Female
Re: Poll: Which iron chelator do you use?
« Reply #13 on: February 12, 2006, 10:49:10 AM »
Ok, deal!  Does it look like I'm hesitating?   :rotfl
I wont hesitate to ask ya anything :P if you dont hestitate too :D

Ok, you got it!  But, I guess you can already tell that I'm not hesitating, so now you just gotta hold up your end of the bargain.   :rotfl

*

Offline Ayesha

  • ***
  • 174
  • Gender: Female
    • Ayesha's Blog!
Re: Poll: Which iron chelator do you use?
« Reply #14 on: February 12, 2006, 11:40:27 AM »
ah! dont worry about me :P I will knock ya door at mid-nite if I need anything :P u will be crying after giving me this bargain heh!!  :rotfl :rotfl
-Ayesha

 

SMF spam blocked by CleanTalk