Hi All !!

  • 36 Replies
  • 33158 Views
*

Offline Ash

  • **
  • 75
  • Gender: Male
    • Thalassaemia WS
Re: Hi All !!
« Reply #15 on: July 16, 2007, 06:09:45 AM »
I am so happy to hear that you guys get Kelfer in Pakistan. Over the last decade I have received quite a few emails from parents asking how they could procure Kelfer from India and I really was not able to help them.

It really disappoints me that the same drugs are not available the world over so many lives could have been saved in 10 years. :(

*

Offline Rani pk

  • **
  • 32
  • Gender: Female
Re: Hi All !!
« Reply #16 on: July 19, 2007, 02:32:17 PM »
Sallam 2 all
members of the group
should i be happy or.....
i hav started (ferinil)iron chelation from 29 of june....
acording to doctors i hav to take five days
n 2days desferal....due to sudden pain in hips
i stoped the medicine but now again i hav start to take..
my first cbc has been done,every thing is normal but :wah
my hb is coming low after 10 days of transfussing blood...
doctor hav told to moniter hb weekly....
pls pray for my hb
n tc
allahafiz
Aneela[/glow]

*

Offline Zaini

  • *****
  • 3448
  • Gender: Female
  • Life is too short to be perfect.
Re: Hi All !!
« Reply #17 on: July 22, 2007, 06:30:44 AM »
Hi Aneela,

Hope you must be doing well,just wanted to ask that how were you able to get ferinil?and from where?what is the doc saying? is your drop of hb somehow related with ferinil? it's unusual though if it is so.

Take care,

ZAINI.
^*^Xaini^*^

Re: Hi All !!
« Reply #18 on: August 08, 2007, 09:12:06 PM »
hy hi 
 nice to hear frm u i guess ur doing gr8 opps i dint give u my intro well i am too new to this sight i am doc my self n suffering frm this disease too living in pindi n wat else .ok u said ur doing job dats nice wish u beat of luck in ur life

*

Offline §ãJ¡Ð ساجد

  • Beta Thal Major
  • *****
  • 1991
  • Gender: Male
  • اَسّلامُ علیکم Peace be Upon you
    • Islamic Resources
Re: Hi All !!
« Reply #19 on: August 09, 2007, 06:03:22 AM »
Hello Mr. Askari,
:welcome to the site. I'm from Rawalpindi as well.

May I inquire in which field are you specialised in and where do you go for your blood transfusions?

Feel free to share your story with us and ask any question that you may have in mind, but since you're a doctor yourself, I think we are the ones that will benefit from your valuable opinions.
اَسّلامُ علیکم Peace be Upon you
§ãJ¡Ð ®âµƒ
Web Site

Re: Hi All !!
« Reply #20 on: August 09, 2007, 09:58:02 PM »
well hy hi again as i told u i am bia(female) frm pindi suffering frm the disease for the past 24 yrs means i was diagnosed whn i was only 1 .i am getting my transfusions frm AFIT n my iron is under contol the latest results was 2500 i taking ferinil almost 8 tab a day.
well i did my bachelors in dental surgery n about to str my house job wolud u like to share sum of u  n it was nice to hear frm u

*

Offline Andy Battaglia

  • *****
  • 8793
  • Gender: Male
  • Will thal rule you or will you rule thal?
Re: Hi All !!
« Reply #21 on: August 11, 2007, 03:05:02 AM »
Hi Askari,

Congratulations on finishing your degree! Keep working on lowering your ferritin. I think it's great that the thals in Pakistan now have easy access to an oral chelator. Kelfer has now been in India for 20 years and it has saved many lives. It will make a big difference in Pakistan.

 :goodluck with your new job.  :biggrin
Andy

All we are saying is give thals a chance.

Re: Hi All !!
« Reply #22 on: August 13, 2007, 08:27:02 PM »
hy hi allllllllllllllll
too glad to hear frm u all .thnx andy for wishishing me luck thnx allot
by the grace of GOD i am going fine in my life n really bright plans for my future
so happy to be here among all u nice people.my am dentist by profession so free advices for all of regarding ur dental peoblems

*

Offline Zaid

  • Thal maj
  • *
  • 19
  • Gender: Male
Re: Hi All !!
« Reply #23 on: August 14, 2007, 10:33:26 PM »
Hi Askari,

Good to hear from you as well. I too have started oral chelation with the new drug "Chelox" a generic made locally by Hilton Pharma. It was referred by one our forumn members "Rani". Thankfully it is doing great so far.  BTW what's the visit frequency for transfusions for you ?

So you're all set to become one of the few dental surgeons in Pakistan. Thats Great !! Keep your spirits high :stars


Zaid

*

Offline Zaini

  • *****
  • 3448
  • Gender: Female
  • Life is too short to be perfect.
Re: Hi All !!
« Reply #24 on: August 15, 2007, 09:03:19 AM »
Hi Zaid,

I hope you are doing well,Did Dr Anwar prescribe chelox to you?bcoz i have never heard of this drug,is this the generic form of ferriprox (defriprone).or something else?what is the cost? waiting for your reply.

TAKE CARE ,

ZAINI.
^*^Xaini^*^

Re: Hi All !!
« Reply #25 on: August 15, 2007, 07:43:03 PM »
hy hi
well  i get transfusion after 12 to 15 days.wat is this drug i hv never heard of it is it good in its work who prescribed u by the way.
does any one knw about the treatment or more correctly gene transplant which is going on in italy is there any chance dat we can hv it

*

Offline §ãJ¡Ð ساجد

  • Beta Thal Major
  • *****
  • 1991
  • Gender: Male
  • اَسّلامُ علیکم Peace be Upon you
    • Islamic Resources
Re: Hi All !!
« Reply #26 on: August 16, 2007, 04:59:07 AM »
Hi Askari,

We are talking about oral chelators which are a substitute for the Desferal injections that we take. The one I know which is being manufactured in Pakistan is Ferinill which has the same chemical composition (Deferiprone) as the famous Ferriprox and Kelfer which are comparatively expensive.

I don't know about Chelox. I think Zaid will tell you more about it.
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: Hi All !!
« Reply #27 on: August 18, 2007, 01:57:47 AM »
Hi Zaid,

Let us know more about using chelox as a chelator. Are you also using any other chelator? Did the doctor tell you what combination he is using as chelox? Chelox is a combination of hydrogen peroxide usually taken through IV and a chelator, such as desferal. The two are taken on alternating days, as they can react with each other if taken the same day. Many doctors use EDTA as the chelator when adminsitering chelox treatments, but for other illnesses, such as atherosclerosis. But EDTA is not useful as an iron chelator. The hydrogen peroxide breaks down in the body into water and an oxygen atom. The claims are that this free oxygen atom can attach to toxic substances and escort them out of the body and it also kills and inhibits many types of harmful bacteria.

From http://www.chelationbc.com/hydrogen_peroxide.html

Quote
The effect of singlet oxygen in the human body is twofold. It kills, or severely inhibits the growth of, anaerobic organisms (bacteria and viruses that use carbon dioxide for fuel and leave oxygen as a by-product). This action is immediate, on contact with the anaerobic organism. Anaerobic bacteria are pathogens, the organisms which cause disease. All viruses are anaerobic.

Aerobic bacteria (those that burn oxygen for fuel and leave carbon dioxide as a by-product — as humans do) found in the human intestine are friendly bacteria, which aid in digestion. These organisms thrive in the presence of hydrogen peroxide.

The second effect of hydrogen peroxide is that it provides singlet oxygen, which, in turn, transforms biological waste products and industrial toxins into inert substances by oxidizing them. This makes them easy to handle for the kidneys and liver. It doubles the rate of enzymatic metabolism in the mitochondria within each cell, thus enabling the body to cleanse itself of toxins and still have plenty of energy to handle the business of living from moment to moment. This increase in metabolism probably accounts for some of the antibacterial, antifungal, and antiviral effects of hydrogen peroxide.

We would all like to here more about this therapy and how well you do in reducing your ferritin level.
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: Hi All !!
« Reply #28 on: August 18, 2007, 05:51:33 AM »
Hi Andy,

I think there is something wrong here. The chelox that I heard made locally are oral pills with same deferiprone which is being manufactured by a local Pharma. company named Hilton Pharma. They don't mention it on their web site. I will contact them and ask about it.

 :huh using a brand name that is used as something else can be confusing :dunno
« Last Edit: August 18, 2007, 06:07:16 AM by §ãJ¡Ð ساجد »
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: Hi All !!
« Reply #29 on: August 18, 2007, 04:29:29 PM »
That's interesting Sajid. Can you find out more about it? Chelox therapy refers to a combination of an antioxidant and a chelator. Are they only using the chelator (deferiprone), or are they combining it with an antioxidant (hydrogen peroxide is what normally fills this role).

http://www.consumerhealth.org/articles/display.cfm?ID=19990303191838

Quote
CHELOX THERAPY One of the treatments I use is Chelox therapy which is a combination of two types of therapies: chelation therapy and oxidative therapy. Oxidation refers to the removal of electrons; oxidative therapy uses agents like hydrogen peroxide as an oxidizer because it can receive electrons and then become reduced to other agents. In Ontario, chelation therapy and hydrogen peroxide therapy are not accepted treatments for atherosclerosis, but the one chelator that I use more than any other, deferoxamine, is indeed an approved and very potent iron chelator.
Andy

All we are saying is give thals a chance.

 

SMF spam blocked by CleanTalk