Desferal Concentration Confusion?!?!

  • 14 Replies
  • 13572 Views
*

Offline §ãJ¡Ð ساجد

  • Beta Thal Major
  • *****
  • 1991
  • Gender: Male
  • اَسّلامُ علیکم Peace be Upon you
    • Islamic Resources
Desferal Concentration Confusion?!?!
« on: April 17, 2007, 02:49:52 PM »
Hi guys,

Ever since I started seeing this new doctor in a different place, things are getting confused for me.

All my life I have been using the 2 vials per 5ml concentration with no ill effects (Except for the painful lumps which were related to the depth of the needle rather than the concentration of Desferal).

Now this new doctor tells me that I've been doing it wrong and I need to make the 1 vial per 5ml solution. I tried to convince her that I've been told by the specialists in K.S.A about my concentration and things have been smooth ever since, but she doesn't agree.

This means that I have to prick myself EVERY DAY!!! with less injections even though I can take in twice the dose but with a break between two injections.

Here's the confusion: I will be getting the same amount of Desferal per week but there is a difference of concentrations in both plans. Does that make any difference in it's effectiveness?

I need the majority's opinion so that either I am convinced to dilute it or convince her that my concentration plan is fine too.

Let me know as soon as possible so please cast your vote now.

Take care, Peace?
اَسّلامُ علیکم Peace be Upon you
§ãJ¡Ð ®âµƒ
Web Site

*

Offline ThalGal

  • **
  • 50
  • Gender: Female
Re: Desferal Concentration Confusion?!?!
« Reply #1 on: April 17, 2007, 08:14:30 PM »

Hi Sajid,

I am on 2 grams (4 vials of 500mgs) of desferal diluted with 10cc of sterile water infused over 8 hrs, for 4 to 5 days a week.   

Some Drs uses the following formula and then tweak it depending in the ferritin levels –
60mg of desferal per kilo.

Good Luck!



*

Offline §ãJ¡Ð ساجد

  • Beta Thal Major
  • *****
  • 1991
  • Gender: Male
  • اَسّلامُ علیکم Peace be Upon you
    • Islamic Resources
Re: Desferal Concentration Confusion?!?!
« Reply #2 on: April 18, 2007, 06:22:23 AM »
Hi Thal Gal,

Please recast your vote.

Take care, Peace!
« Last Edit: April 19, 2007, 06:28:29 AM by §ãJ¡Ð ساجد »
اَسّلامُ علیکم Peace be Upon you
§ãJ¡Ð ®âµƒ
Web Site

*

Offline ThalGal

  • **
  • 50
  • Gender: Female
Re: Desferal Concentration Confusion?!?!
« Reply #3 on: April 18, 2007, 08:17:02 PM »
Hi Sajid,

According to Novartis (http://www.novartis.ca/downloads/en/products/desferal_scrip_e.pdf) 5ml sterile water to 500 mg of Desferal.

Also, Desferal is available in 500mg vials and 2g vials - which are you referring to?


Hope this clarifies some questions.

*

Offline vic

  • **
  • 96
  • Gender: Female
  • thal minor with sickle cell child
Re: Desferal Concentration Confusion?!?!
« Reply #4 on: April 19, 2007, 01:17:57 AM »
interesting attachment sajid.

what intrigues me is the possible complications with desferal if not dosed correctly and possible side effcts.

when comparing to exjade it seems they are on an equal par- that is, they both chelate but they both have some iisues.  so why is everyone reluctant to give christian the go ahead with exjade.  to me it seems like much of a muchness?

vic

*

Offline Andy Battaglia

  • *****
  • 8793
  • Gender: Male
  • Will thal rule you or will you rule thal?
Re: Desferal Concentration Confusion?!?!
« Reply #5 on: April 19, 2007, 02:15:26 AM »
Novartis has different recommendations for different countries, most likely in accordance with varying approval guidelines. In the US, exjade is available for age 2 and up. In many countries it is 6 and up. My guess is that is because laws in the US are not as strict in terms of requiring prior testing on the specific age group. Ask your doctor if exjade is specifically prohibited for his age group or if it is a recommendation that can be overridden by the doctor.
Andy

All we are saying is give thals a chance.

*

Offline §ãJ¡Ð ساجد

  • Beta Thal Major
  • *****
  • 1991
  • Gender: Male
  • اَسّلامُ علیکم Peace be Upon you
    • Islamic Resources
Re: Desferal Concentration Confusion?!?!
« Reply #6 on: April 19, 2007, 06:27:03 AM »
Hi everyone,

I've changed the format of the poll to doses instead of concentration.

I think it was causing confusion to everyone as much as for me :rotfl,

Anyway now you just have to select what dose of Desferal with the amount of water that you use.

Please recast your vote. Sorry for the inconveinance/confusion.

Take care, Peace!
اَسّلامُ علیکم Peace be Upon you
§ãJ¡Ð ®âµƒ
Web Site

*

Offline Zaini

  • *****
  • 3448
  • Gender: Female
  • Life is too short to be perfect.
Re: Desferal Concentration Confusion?!?!
« Reply #7 on: April 19, 2007, 02:15:13 PM »
Hi Sajid,

we use 2 vials ,meaning, 1000 mg, with 10 ml of sterile water.

ZAINI.
^*^Xaini^*^

*

Offline Danielle

  • Beta Thal Major
  • *****
  • 848
  • Gender: Female
Re: Desferal Concentration Confusion?!?!
« Reply #8 on: April 20, 2007, 05:47:29 PM »
I use 2000mg (2g) in 20ml of sterile water.  That's the only way I can tolerate it.  I picked the wrong choice by accident.  In the past, I used 30ml, so I chose "other" but then realized I was back down to 20ml.

*

Offline Andy Battaglia

  • *****
  • 8793
  • Gender: Male
  • Will thal rule you or will you rule thal?
Re: Desferal Concentration Confusion?!?!
« Reply #9 on: April 20, 2007, 05:52:57 PM »
Danielle,

I changed the setting so people can change their vote in case they picked the wrong one.
Andy

All we are saying is give thals a chance.

*

Offline Danielle

  • Beta Thal Major
  • *****
  • 848
  • Gender: Female
Re: Desferal Concentration Confusion?!?!
« Reply #10 on: April 20, 2007, 05:55:42 PM »
Thank you, Capt.Thal Care!  You read my mind, but I was too tired to go and find that setting.  :rotfl

*

Offline Rani pk

  • **
  • 32
  • Gender: Female
Re: Desferal Concentration Confusion?!?!
« Reply #11 on: April 22, 2007, 05:32:46 AM »
HI 2 ALL
I TAKE 2gm in 8 cc taking 3to 4 days a week but
im very upset to c that my level is still high :wah ???
wht to do???
Aneela[/glow]

*

Offline Zaini

  • *****
  • 3448
  • Gender: Female
  • Life is too short to be perfect.
Re: Desferal Concentration Confusion?!?!
« Reply #12 on: April 22, 2007, 12:08:24 PM »
Hi Aneela,

I think you should start it for 5 to 6 days,and aren't you taking ferriprox?if not ,why?

ZAINI.
^*^Xaini^*^

*

Offline §ãJ¡Ð ساجد

  • Beta Thal Major
  • *****
  • 1991
  • Gender: Male
  • اَسّلامُ علیکم Peace be Upon you
    • Islamic Resources
Re: Desferal Concentration Confusion?!?!
« Reply #13 on: April 22, 2007, 02:28:04 PM »
HI 2 ALL
I TAKE 2gm in 8 cc taking 3to 4 days a week but
im very upset to c that my level is still high :wah ???
wht to do???

Hi,

That's the same amount I take too since my syringe will not fit with the full 10 ml. Thus it is also considered 2000mg per 10 ml so you should select that option as well.

As for your S.F levels are concerned then I recommend you start combination therapy and do Desferal on alternate days.

Wishing you all the best for getting those S.F levels down.

Take care, Peace!
اَسّلامُ علیکم Peace be Upon you
§ãJ¡Ð ®âµƒ
Web Site

*

Offline Andy Battaglia

  • *****
  • 8793
  • Gender: Male
  • Will thal rule you or will you rule thal?
Re: Desferal Concentration Confusion?!?!
« Reply #14 on: April 22, 2007, 03:34:15 PM »
Desferal works best when taken over a longer period of time. The best way to do this is to dilute it more. 2000 mg in 20 ml water is more effective than using half the liquid. Is it possible to use a bigger syringe with your pumps?

Also, taking desferal 3 or 4 times a week is not enough and is why the ferritin increases. Desferal should be taken 5-6 times weekly if it is the only chelator being used.  I know it's a burden, but there isn't much choice. Make sure you are taking up to 250 mg vitamin C along with your desferal, as it does increase the amount of iron removed. Also, drink tea with every meal to help inhibit iron absorption from food. If you do have L1 available where you are, try it out. There is no longer any doubt that L1 is the superior chelator at removing iron from the heart, where it does its most damage. Study after study has shown that L1 is superior, and that combination with desferal is the most effective chelation method. One bit of advice with L1. Do not start on the maximum dosage. Start out slowly and allow your body to become accustomed to the new drug. It will greatly reduce the amount of discomfort in the digestive system. And always follow the most important rule of using L1. Get your white blood cell count tested at least every two weeks and preferably, every week.
Andy

All we are saying is give thals a chance.

 

SMF spam blocked by CleanTalk