Thalassemia Patients and Friends
Discussion Forums => Iron Chelation Corner => Topic started by: Andy Battaglia on March 23, 2012, 04:37:36 AM
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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.
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Perfectly summarised, Andy! Thank you!
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This post was originally posted on Facebook thalpal. I have been seeing a lot of incomplete and incorrect information and felt there was a need for a succinct summary of the chelation drugs currently available. I feel that the most important aspect is often forgotten; compliance. And finding some way to comply is the most essential thing. For example, I have questions about the long term use of Exjade, but I cannot argue with the fact that the availability of Exjade has greatly increased compliance. I do hesitate to advise it in some older patients, but for younger patients, I see it as the drug that has liberated patients and parents from the desferal ordeal, and I see it has tremendous value, just as Ferriprox and Kelfer have had for many years.
I also want to note that info about 32.6 mg/kg for Exjade. For those who seem to plateau in the 1000-2000 ferritin range, you might consider upping the dose slightly. For the additional amount to reach this ratio multiply 2.6 times the weight of the person times 7. This will give you the approximate extra dosage needed to reach 32.6 mg/kg. On average, it may be about two extra tabs per week. I'd be interested in hearing from anyone who tries this ratio with Exjade.
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This is great Andy - every parent should get a copy of this when their child is diagnosed.
Sharmin
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Andy,
please explain to us: why you seem to be reluctant to exjade given to older patients?
Lena
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Andy,
I never had such precise information about the chelators before.I am giving my son 2days ferripro and then 2days asunra as he has nausea if he takes ferripro more than 2days.Is this ok.
Shaista
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Lena,
I had missed your post. I am hesitant to suggest Exjade for older thals because a majority of older thals already have compromised livers due to hepatitis and because the vast majority of deaths associated with Exjade are in older patients with MDS (myelodysplastic syndrome), but not all have MDS.
http://www.fda.gov/Drugs/DrugSafety/PostmarketDrugSafetyInformationforPatientsandProviders/DrugSafetyInformationforHeathcareProfessionals/ucm183651.htm
FDA is reviewing adverse event information for Exjade from a database that tracks all patients who are prescribed Exjade and a company-sponsored global safety database. This information suggests there may be a greater risk for adverse events such as kidney failure, gastrointestinal hemorrhage (potentially fatal bleeding) and deaths in patients with myelodysplastic syndrome (MDS) compared to patients without these conditions. Many of these patients are over age 60 and the adverse events are problems that are not uncommon in people with MDS. The number of deaths and serious adverse events seem to be fewer in younger patients with other chronic anemias such as β Thalassemia and Sickle Cell disease.
I am not comfortable with the line "...seem to be fewer.." as this does imply deaths among thal patients. Again, I feel that a patient, such as yourself, who is in a treatment program with very close monitoring, has much less chance of complications, most patients are not as closely monitored. So, I remain somewhat uncomfortable with a blanket recommendation of Exjade for older patients and a strong warning to parents of children to watch for drops in Hb level when a child is using Exjade, as this is most likely related to gastrointestinal bleeding. Lena, I would feel so much better if all patient were as closely monitored as you. I also feel that if an older patient's iron load is under control on another chelator or combination without any serious side effects, there is no good justification for switching to Exjade.
Shaista,
Alternating chelators to reduce side effects is a long accepted practice, even if the combination you are using is not yet accepted, due to lack of trials. Please do promise to always have the required monthly tests done.
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Andy,
I just saw your post. Thank you very much for the info. I completely agree with your suggestion to prefer any other monotherapy or combination therapy instead of an exjade including chelation therapy. I am glad I have at last concluded as to that and never again wonder whether I should use exjade or not. Anyway, my doctor seems to have the same opinion on that issue. Thanks again,
Lena
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Hi,
I am giving Mohib 1500mg of exjade and asunra 800mg on 2days alternate pattern.But mohib is getting lethargic,having body aches and nausea.He even refused to take any other supplement.Is it bcoz of chelation drugs.What wii u people suggest
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Is it possible it's something like a cold? If he is having nausea, you might want to stop the chelators until the nausea passed. And always make sure he takes plenty of fluid daily. This is very important when using chelation drugs.
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Thank you so much Andy!
My doctor always tells me to use both Ferriprox and Desferal together but I never understood why!
Thank you for the clarification!
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Fatima,
The desferal/Ferriprox combination has been proven over and over to be the most effective chelation for removing iron from both heart and liver. When your doctor tells you this, it shows that your doctor is well informed on the subject, which is quite comforting to know.
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Hello!
I just want to ask which of the chelators can most probably be cheaper but less side effects? My iron is about 1600+ last dec. but I haven't checked it again and I also haven't started the chelation therapy.. Thanks!
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Hello!
I just want to ask which of the chelators can most probably be cheaper but less side effects? My iron is about 1600+ last dec. but I haven't checked it again and I also haven't started the chelation therapy.. Thanks!
Hi Cherry Mar,
L1 (Defriprone/Ferriprox/Kelfer) is a relatively cheaper chelator than Desferal and Exjade. All the 3 chelators i.e. Ferriprox, Desferal and Exjade have side effects.
Dharmesh
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thank you Dharmesh!
what could be the most side effects that i can get from taking this chelators? and may I ask if the swelling of my feet sometimes and muscle cramps have to do with my iron overload or thal condition?
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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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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 ???
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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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 ???
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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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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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..
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Hi Debdatta,
Is it your total dosage.. 400mg only?
Good to learn that ur fe is 1000.. great
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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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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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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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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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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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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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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, 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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No ingredients are listed at either page and no reviews have been listed. I cannot endorse this expensive product.
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Great Advice Andy.
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Hello, all!
Does anyone know if I can take IP6 and Curcumin along with Exjade? Would it causes any serious drug interactions? Any answer would be really appreciated.
Thanks in advance
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Hello, all!
Does anyone know if I can take IP6 and Curcumin along with Exjade? Would it causes any serious drug interactions? Any answer would be really appreciated.
Thanks in advance
You should be fine.
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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.
Hi Andy,
My son is taking Exjade ( 2 tablets 2 times), his ferritin is about 1100. So that does he need to take Vit C ? When and how many per time will be good?
Tks so much.
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Vitamin C adds to the chelation effect of desferal. This is not the case with Exjade. If your son has a good diet with fruits and vegetables, he should be able to get enough vitamin C that way. Citrus fruits are especially high in C.
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Vitamin C adds to the chelation effect of desferal. This is not the case with Exjade. If your son has a good diet with fruits and vegetables, he should be able to get enough vitamin C that way. Citrus fruits are especially high in C.
Tks Andy