Hi Thalpal

  • 113 Replies
  • 89518 Views
*

Offline Andy Battaglia

  • *****
  • 8793
  • Gender: Male
  • Will thal rule you or will you rule thal?
Re: Hi Thalpal
« Reply #15 on: June 02, 2012, 05:32:59 PM »
The normal dose of Asunra should be used daily. This should be supplemented with desferal 2-5 times per week, depending on the severity of the iron load. It is best if true iron load can be determined by liver and heart MRI.
Andy

All we are saying is give thals a chance.

*

Offline Dharmesh

  • *****
  • 610
  • Gender: Male
Re: Hi Thalpal
« Reply #16 on: June 05, 2012, 10:07:48 AM »
The normal dose of Asunra should be used daily. This should be supplemented with desferal 2-5 times per week, depending on the severity of the iron load. It is best if true iron load can be determined by liver and heart MRI.
Hi Andy,
Before going towards combi. therapy of Asunra + Desferal , i think that i should wait for 6 months to see the effect of maximum as well as splitted dose of Asunra. As i have just increased the dose from 1200mg to 1600mg since one month before. And now i am taking appox. 1800mg. daily. So , am i right to give time to Asunra?
Start listening your body, it always gives signs

*

Offline Andy Battaglia

  • *****
  • 8793
  • Gender: Male
  • Will thal rule you or will you rule thal?
Re: Hi Thalpal
« Reply #17 on: June 05, 2012, 02:50:20 PM »
Yes Dharmesh. I feel one big problem with Exjade or Asunra is that patients often abandon the drug before giving it enough time to show results.
Andy

All we are saying is give thals a chance.

*

Offline Dharmesh

  • *****
  • 610
  • Gender: Male
Re: Hi Thalpal
« Reply #18 on: June 06, 2012, 04:52:52 AM »
Yes Dharmesh. I feel one big problem with Exjade or Asunra is that patients often abandon the drug before giving it enough time to show results.
Thanx Andy for reply,
Want to know that whether the Asunra remove iron from heart? Because it remove tissue iron than how the iron running in blood get removed which can cause reduction of S.Ferritin? ??? ???
Start listening your body, it always gives signs

*

Offline Andy Battaglia

  • *****
  • 8793
  • Gender: Male
  • Will thal rule you or will you rule thal?
Re: Hi Thalpal
« Reply #19 on: June 07, 2012, 02:38:05 AM »
Yes, Exjade has been shown to be effective removing iron from the heart and other organs. It removes iron throughout the body, including free iron in the blood. It is not as effective as deferiprone (Kelfer, Ferriprox) at removing heart iron, but over time it is effective.
Andy

All we are saying is give thals a chance.

*

Offline Dharmesh

  • *****
  • 610
  • Gender: Male
Re: Hi Thalpal
« Reply #20 on: June 09, 2012, 11:00:27 AM »
Hello,
My S.Ferittin's  Latest Report on 28/05/2012=15560 ng/ml
and previous reports are 15/03/2012=6870 ng/ml and 29/11/2011=6129 ng/ml
Whether this kind of large fluctuation is possible?(From 6870 to 15560 ng/ml within so short period)
Dharmesh
Start listening your body, it always gives signs

*

Offline Andy Battaglia

  • *****
  • 8793
  • Gender: Male
  • Will thal rule you or will you rule thal?
Re: Hi Thalpal
« Reply #21 on: June 09, 2012, 04:08:35 PM »
This is the second time this week that someone from India has reported ridiculous ferritin scores to me. The other person is chelating 24/7 with desferal. I am prone to think that it is the lab and not the patients. The other patient's doctor even told her that  the score could not be accurate. Is it possible to get tested at a different lab?
Andy

All we are saying is give thals a chance.

*

Offline Dharmesh

  • *****
  • 610
  • Gender: Male
Re: Hi Thalpal
« Reply #22 on: June 10, 2012, 10:14:39 AM »
This is the second time this week that someone from India has reported ridiculous ferritin scores to me. The other person is chelating 24/7 with desferal. I am prone to think that it is the lab and not the patients. The other patient's doctor even told her that  the score could not be accurate. Is it possible to get tested at a different lab?
Yeah, defenately i will try another lab and i am sure the last report of 15560ng/ml s.ferittin is wrong. I am on regular chelation since last 22 years but with low dose and this jump is not possible from 6870 to 15560 ng/ml :rotfl
Please pray for me to have a good report of s.ferittin.
I will update report soon
Dharmesh
Start listening your body, it always gives signs

*

Offline Dharmesh

  • *****
  • 610
  • Gender: Male
Re: Hi Thalpal
« Reply #23 on: June 11, 2012, 04:52:09 PM »
Hi Andy,
My latest report today S.Ferritin 6440ng/ml done in another lab.
Still an existing  chellange to bring it to 440 ng/ml.
Dharmesh
Start listening your body, it always gives signs

*

Offline Andy Battaglia

  • *****
  • 8793
  • Gender: Male
  • Will thal rule you or will you rule thal?
Re: Hi Thalpal
« Reply #24 on: June 11, 2012, 11:44:14 PM »
I think you should consider taking desferal a couple times each week in addition to Asunra.
Andy

All we are saying is give thals a chance.

*

Offline Dharmesh

  • *****
  • 610
  • Gender: Male
Re: Hi Thalpal
« Reply #25 on: June 12, 2012, 08:28:08 AM »
Hi Andy,
How many desferal injection to be taken in a week in addition to Asunra?
Right now i am taking Asunra twice a day so if i take Desferal in the evening then i have to skip Asunra on that particular evening? Or I have to take Asunra and Desferal both at the same time?
Need your guidence.
Dharmesh.
Start listening your body, it always gives signs

*

Offline Andy Battaglia

  • *****
  • 8793
  • Gender: Male
  • Will thal rule you or will you rule thal?
Re: Hi Thalpal
« Reply #26 on: June 12, 2012, 10:00:07 PM »
You can take both at the same time. It won't be a problem. Take whatever you can manage. I would suggest 2-3 times per week.
Andy

All we are saying is give thals a chance.

*

Offline Dharmesh

  • *****
  • 610
  • Gender: Male
Re: Hi Thalpal
« Reply #27 on: June 17, 2012, 08:17:44 AM »
Hi Andy,
Don't be shocked please
Heare is my T2* Score
Heart Severe= 7.1
Liver Severe= 370
On 2000 mg Asunra
Weight 47.5 Kgs
Doctor Suggested to take 2400 mg Asunra for temporary 1 month
Otherwise will add Desferal
Dharmesh
Start listening your body, it always gives signs

*

Offline Andy Battaglia

  • *****
  • 8793
  • Gender: Male
  • Will thal rule you or will you rule thal?
Re: Hi Thalpal
« Reply #28 on: June 17, 2012, 03:58:16 PM »
Dharmesh,

The scores are of great concern, but I have seen similar reversed by a total commitment to chelation compliance. Ideally, combination therapy should be used. High dose Exjade or Asunra, at 40 mg/kg has shown to be effective for reducing high iron loads, but side effects can make this a difficult long term strategy. I would definitely recommend adding desferal at least twice weekly. I have seen patients turn things around using various strategies. These are some of the strategies.
Desferal 7 days a week for at least 12 hours each time.
IV desferal 24/7 and kelfer (Ferriprox).
Exjade at maximum dosage along with desferal several times per week.
All 3 chelators in combinations of no more than 2 at one time (this method worked well for an experienced patient who developed this on his own).

The key is a total commitment to chelation. There can be no excuses. Chelation has to come first in your life. A thal mom I know used desferal 7 days a week. She started with a T2* of 8. After one year, it was 13.8. After two years it was over 20.

Stay committed. Report your progress and lean on us for support. You can do this, so don't let the scores scare or depress you. I have seen patients with ferritins over 13,000 bring them down to under 1000 and even much lower by staying focused. You can and will succeed as long as you decide you will.
Andy

All we are saying is give thals a chance.

*

Offline Dharmesh

  • *****
  • 610
  • Gender: Male
Re: Hi Thalpal
« Reply #29 on: June 21, 2012, 05:21:41 AM »
Hi Andy,
Thank You for your such in-depth advice.
I am going to start Combination Therapy within this week.
I will start Desferal and Asunra.
Desferal atleast twice in a week and Asunra 2000mg daily.
Exjade at maximum dosage along with desferal several times per week.( What is the mean of maximum dose 30mg/kg or 40mg/kg?)
Dharmesh
Start listening your body, it always gives signs

 

SMF spam blocked by CleanTalk