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Author Topic: Iron Chelation Drugs  (Read 45004 times)
Dharmesh
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« Reply #15 on: July 16, 2012, 07:07:27 AM »

Hi Cherry Mar,
I can just give you some information as i am not a doctor.
The side effects are as under
L1- Joint Pain, Problem with neautophil
Exjade- Liver and Renal Functions.
Swelling in Feet and may be due to Low hemoglobin level, i guess.

Hey Andybro,
Please correct me if i write some wrong or something is missing.
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Asma Jamal
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« Reply #16 on: February 09, 2013, 01:44:04 AM »

Andy,

thankx for providing useful information about iron chelation.

M 28 having iron overload.. its around 7000.. right nw m using desferol subq.. but its really painful
I tried ferriprox once but it did'nt suit me coz my cbc get disturbed.

I hav'nt tried asunra. Bcoz my Dr's dont recommend it for me. M little confused bcoz my dr's over here say tht asunra is not effective in older patients.. is tht true Huh?
If asunra is not vry effective than shud i try exjade? Is thr any differnce b/w the two?
How can i get exjade in my country? n whts its price nw?
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« Reply #17 on: February 09, 2013, 07:11:30 AM »

Andy,

thankx for providing useful information about iron chelation.

M 28 having iron overload.. its around 7000.. right nw m using desferol subq.. but its really painful
I tried ferriprox once but it did'nt suit me coz my cbc get disturbed.

I hav'nt tried asunra. Bcoz my Dr's dont recommend it for me. M little confused bcoz my dr's over here say tht asunra is not effective in older patients.. is tht true Huh?
If asunra is not vry effective than shud i try exjade? Is thr any differnce b/w the two?
How can i get exjade in my country? n whts its price nw?
Hi,

Exjade and Asunra, both are same. Exjade is the brand name in some countries (mostly EU and Western countries) while the India/East sided brand name is "Asunra" - both are same and manufactured by Novartis only.

-P.
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« Reply #18 on: February 09, 2013, 08:53:14 AM »

Asunra is available in Pakistan and there is no reason that you can't take it. With a ferritin of 7000, I would suggest taking both desferal and Asunra. Your doctor is confused about what "older" patients means. There is a high death rate in Exjade users who are quite old, >60, and who have a different disorder. At your age, you should have no concerns. You do need to be much more aggressive with your chelation, Take 200 mg vitamin C when you begin desferal, as this will aid iron remoaval. Don't take more than 250 mg daily.
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debadattapradhan
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« Reply #19 on: March 13, 2013, 07:26:59 AM »

Hi all

I am Debadatta . I am 28 years old . I use Asunra 400mg/day. I am not feeling any side effects upto now. Also my feritin label is below 1000.

Also I am not sure for all who want to use this. I just said my experience.

Andy,

Please suggest..

« Last Edit: March 13, 2013, 07:32:01 AM by debadattapradhan » Logged
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« Reply #20 on: March 13, 2013, 08:40:19 AM »

Hi Debdatta,

Is it your total dosage.. 400mg only?

Good to learn that ur fe is 1000.. great
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Pratik
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« Reply #21 on: March 13, 2013, 09:08:27 AM »

Hi all

I am Debadatta . I am 28 years old . I use Asunra 400mg/day. I am not feeling any side effects upto now. Also my feritin label is below 1000.

Also I am not sure for all who want to use this. I just said my experience.

Andy,

Please suggest..


Very nice, Deba!

Perhaps you can split dose and increase the dose to 600 or so and bring iron around 500 and maintain it thereafter with low dose.

Best,

-P.
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« Reply #22 on: April 04, 2013, 01:58:44 AM »

There are currently three iron chelation drugs available. (This will change, as more drugs are introduced).
1) Deferoxamine (Desferal). Given as a subcutaneous infusion. Given by IV when high iron load is significantly affecting heart function.
2) Deferiprone. (L1, Ferriprox, Kelfer). Taken as an oral medication 3 times daily at a dose of 75 mg/kg. Has been shown to be the most effective chelator for cardiac iron and also has a cardioprotective effect. Not as effective as desferal in the liver, but does control liver iron concentrations at acceptable levels.
3) Deferasirox. (Exjade, Asunra, Desirox). Taken orally. Novartis recommends it once daily. 30 mg/kg daily. (Recent studies have shown a dose of 32.6 mg/kg daily, effectively maintains low ferritin levels). For high ferritin levels, a dose of 40 mg/kg is required, if tolerated. If not, a different chelation drug or combination should be considered. Notes for starting on any of the deferasirox drugs: Do not start out at 30 mg/kg. Start at 10-15 mg/kg daily, so that the body becomes accustomed to the drug. This reduces the incidence of the common rash and also allows the stomach time to adjust to the new med. After 2 weeks, try raising the dose. If no side effects are seen, keep the dose at the prescribed amount. Deferasirox alone, may not be the best choice for high ferritin patients. Ongoing informal trials by members of thalpal have shown that splitting the dose into two, taking half in morning and half later in the day, make deferasirox more tolerable and also more effective. Parents have been pleased with the progress their children are making when they split the dose. Also, after more testing, Novartis has expanded the list, so a variety of juices and soft foods are acceptable for mixing purposes. 
Patience is often needed when using deferasirox. Many patients with high iron show little to no progress in ferritin levels during their first year on deferasirox. However, in most of these cases, substantial progress will be noted in the second year. Many make the mistake of giving up too early. If a higher iron load exists in the organs, it will take some time to reverse, but the drug does work for most patients, as long as they are fully compliant. 40 mg/kg may be required.

The most effective chelation method currently known is a combination of desferal and deferiprone. This is the quickest way to reduce iron loads and to clean iron from the organs. The dosages will depend on the individual's iron load, as measured by T2* and MRI. For patients with high iron loads, this combination gets the highest rating.
There have been small trials involving desferal and deferasirox. These trials have had positive results. Patients experienced a drop in iron loads, when using only one chelator could not reduce the ferritin level to acceptable ranges. Currently a ferritin of 500 is considered an acceptable load. If frequent monitoring is available, ferritins in the 100-300 range are reasonable goals. No new side effects have been seen with this combination. It should be considered in patients whose iron load is not under control, using one of the drugs alone.
Deferasirox and deferiprone have been in small trials together for short periods. While it appears that it may be an effective combination, not enough is known about long term effects on the kidneys and liver to recommend this at this time.

When heart function is greatly reduced and cardiac failure is likely, the patient should be put on IV desferal 24/7.


What is best? That depends on the patient. Many patients will not stay compliant with desferal, and the oral chelators prove a valuable substitute. When it comes to chelation in the real world where patients are often less than fully compliant, a "whatever works" philosophy may be needed. Being flexible and innovative in establishing good compliance routines may be needed for some patients. In the end, this may determine whether a patient lives or dies. Most authorities believe that patients should not be on just one chelator during their lifetimes, as switching helps to minimize the long term side effects of the drugs. For those counseling thals about compliance, flexibility is necessary. Stubborn insistence on a specific chelator when the patient will not comply has led to the deaths of many thalassemics.

* All chelators have known side effects, which can be seen by searching for that particular drug online. When a drug is unsuitable for that patient, another chelator must be used.

Sir,
My daughter Ipshita Agarwal (7½ years) is on regular blood transfusion from last 7 years.

Since 17/11/2008, on dcotor's advice; we are giving her Asurna daily for iron chelation. Dosages are always monitored according to her body weight and as of now she is 18 kgs and taking 600mg daily from last 9 months.

Ipshita’s ferritin level is increasing and it seems that ASURNA is not working. (plz. note that she is taking her medicines properly, under my supervision). Her Ferritin level table-

Date   Ferritin Level   Dosage Of Asurna
23 April 2012   2952 ng/ml   400mg daily
06 September 2012   2495 ng/ml   600mg daily
10 January 2013   3713 ng/ml   600mg daily
16 March 2013   3968 ng/ml   600mg daily

Kindly advice us a convenient way to decrease Iron load from her body.

Thanking You,

Abhishek Agarwal.
(Father of Ipshita)
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Pratik
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« Reply #23 on: April 04, 2013, 08:50:17 AM »

Sir,
My daughter Ipshita Agarwal (7½ years) is on regular blood transfusion from last 7 years.

Since 17/11/2008, on dcotor's advice; we are giving her Asurna daily for iron chelation. Dosages are always monitored according to her body weight and as of now she is 18 kgs and taking 600mg daily from last 9 months.

Ipshita’s ferritin level is increasing and it seems that ASURNA is not working. (plz. note that she is taking her medicines properly, under my supervision). Her Ferritin level table-

Date   Ferritin Level   Dosage Of Asurna
23 April 2012   2952 ng/ml   400mg daily
06 September 2012   2495 ng/ml   600mg daily
10 January 2013   3713 ng/ml   600mg daily
16 March 2013   3968 ng/ml   600mg daily

Kindly advice us a convenient way to decrease Iron load from her body.

Thanking You,

Abhishek Agarwal.
(Father of Ipshita)

Hi Abhishek,

Welcome to Thalpal!

I too was sailing in the same boat last year as you're now. As soon as Asunra was made available in India, I started taking it (somewhere around May 2008) but it didn't reduced iron.

Last year, I just came over here again just to check some topics and I found lot of valuable info which changed my life and the way I live and see my life today.

Asunra does not give true 24 hour chelation but it's life is only around 12-16 hours. To achieve these, members of Thalpal with Andy being pioneer developed the "split dose" strategy to achieve a nearly 24 hour true chelation.

What you do is give the first half dose in the morning, and other half dose in the evening. In your case, she could take 300mg in morning and other half (300mg) in evening around 5 or 6 PM.

Out of all members who tried this, Asunra worked like a charm for them including me! My iron is now showing constant reduction which didn't happen till past 4-5 years!

Also, make sure that you are preparing Asunra in a glass not of metal (steel) or not even steel spoon, take a plastic spoon. Metals react with Asunra and thus making it's effect neutral and much less effective.

I'm sure that if you try this, your reports will start showing a constant decrease.

If you've any questions, feel free to ask.

As a side note, thalpal have been boon for me. I came to know about so many vital supplements through this site and I'm living much better life "than" before.

Best,

-P.
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« Reply #24 on: April 06, 2013, 03:52:32 AM »

Take asunra 400 mg in morning and 200 mg in evening
maintain gap of 12 hours between two dosage

Adjust the dosage as and when weight changes. renal and liver function tests are to be done regularly.
dosage can be increased upto 40-45 mg , if s.ferritin do not drop after long time.
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Abhishek
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« Reply #25 on: April 20, 2013, 07:48:01 AM »

Firstly, i like to thank Pratik for your reply. i have already started splitting Asurna dosage of my daughter & i am sure she will be benefited.

Few days back i came across an artical regarding benefits of 'Ayurvedic' treatment for thallasemic patients. They claimed it to be helpful in iron chelation also.  I want to know if anyone has any experience of using these types of alternative medicines?

I am pasting their e-mail for your persual. They wrote -

Dear Sir,


Our Herbomineral formulation was researched and developed at India’s most reputed research Institure for Ayurveda studies. As a joint effort we are the co owner of the patent for this formulation.
These are some of the salient features of herbo-mineral formulation:
1.      Oral administration. Maximum does is 6 capsules a day. According to body weight and serum feritin level.
2.      Chelates only excess iron, not any other essential element. So no need to take any other supplements for copper or zinc balance in the body.
3.      Good tissue penetration
4.      Easy mobilization of the iron-chelator complex.
5.      100 % safe and Non-toxic.
6.      Reduces the Abdominal Pain, chest pain, Chronic Fatigue, and Shortness of Breath within 3 to 5 days of drug administration.
7.      We have observed that size of spleen gets normalize within 50 days of treatment.
8.      Patient will feel improved quality of life within 15 days of treatment.
9.      Serum Ferritin level lowers up to 700-900 ng/mL within 30 days of treatment in the patients under regular blood transfusion. Hence result may very according to the number of B.T. and body type.
10.  Also may be administered along with conventional chelation treatment as a supportive therapy.



Thanks & Regards,
Team
BENMOON PHARMA RESEARCH PVT. LTD.
ISO 9001:2000, GMP & HACCP CERTIFIED CO.
DISCOVERING NATURE, HEALING LIVES
www.benmoonpharma.com

Andy sir, if possible, please study the above medicine and suggest accordingly.

Abhishek Agarwal
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Andy Battaglia
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« Reply #26 on: April 21, 2013, 10:27:10 AM »

Abhishek, can you give me the name of the preparation you are referring to on their website? There are many formulas on the linked page.
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Pratik
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« Reply #27 on: April 21, 2013, 11:40:58 AM »

That sounds interesting Abhishek.

Haven't heard anything about it though, I'll be interested to hear what Andy has to say about it after studying it.

Best,

-P.
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Abhishek
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« Reply #28 on: April 22, 2013, 12:49:14 AM »

Abhishek, can you give me the name of the preparation you are referring to on their website? There are many formulas on the linked page.

Thanks Andy Sir.
Please see the link below to see the formulation.
http://www.benmoonpharma.com/benmoon-treatment/over-loading-disorders/iron-overloading-disease-p-194.html
&
http://www.benmoonpharma.com/benmoon-treatment/hematological-disorder/thalassemia-treatment-p-185.html

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Andy Battaglia
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« Reply #29 on: April 22, 2013, 10:22:58 AM »

No ingredients are listed at either page and no reviews have been listed. I cannot endorse this expensive product.
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