Chelation question

To all,

when your ferritin is 142 and heart and liver, according to MRI results, totally clear, your Lic 1... then which is the chelation scheme you should care to enter? What do you think?
 I am placing this question to all, not because I do not know, but in order to underline things regarding chelation...as I have, time and again, witnessed some very incorrect schemes suggested by doctors.


Lena

Oh i wish Little Z will get there soon,but not yet.

Hi Lena,

There is no right or wrong chelation scheme, it is a protocol your doctor is following. In Canada, the chelation stops completely after ferritin reaches below 300, starts again after 2-3 months. Again, it is not a question whether it is right or wrong. The objective of chelation is clearly to keep the ferrtin level at minimum target of 300, as long as it is done, there should be no concerns.

Some places may choose to continue even if the ferritin is below 300. That is the choice and will of parents, patients and doctors.

Hope this helps.

I also think it also matters if the chelation is for a growing child or adult. In Boston, the doc always said it is a delicate balance between adquate chelation and making sure the important minerals do not get chelated to affect the growth of a growing child.

To all,

when your ferritin is 142 and heart and liver, according to MRI results, totally clear, your Lic 1... then which is the chelation scheme you should care to enter? What do you think?
 I am placing this question to all, not because I do not know, but in order to underline things regarding chelation...as I have, time and again, witnessed some very incorrect schemes suggested by doctors.


Lena

Lena,

My ferritin levels are also now around 100-125 and have remained at this level for sometime. I have continued a reduced dose of chelation, which I achieved through trial and error, to maintain this level. I was on 9x500mg per day of L1, reduced it to 3x500, found that to be too low as Ferritin went up, and now I am on 5x500, which seems to be my steady dosage.

From a math perspective, each unit of blood roughly adds about 200mg of iron to your body - each chelator excretes a diff quantity of iron per unit of dose - for eg, L1 removes around 3-7 mg of iron per 500mg dose in a half-life cycle of 12 hours. The range is not exact, it depends on your physiognomy, but it is fairly accurate IMO.  So, once you are below 150 (normal, upper end limit for adults), you can work out the maintenance schedule you require based on your chelator, your transfusion schedule and your body.

Hope that helps.

Cheers

Poirot

Thank you all guys for your replies,

I am not at a loss as to which chelation scheme to follow. I only forwarded this question just to let you know that chelation should not be stopped or postponed or reduced too much, when one is in my shoes. In fact, my doctor-for my case- suggested following chelation scheme:

13 ferriprox per day and 4 times X 6 desferal per week.

Poirot,
my transfusion programme is 1 unit every 15 days.

I am sure considering my ferritin and my being heart - and- liver- clear, one should regard this scheme as too much. But it is  not. That's what I needed to underline to all of you. IT IS NOT, if you care to keep your ferritin and T2* low.

Lena

Thank you for sharing Lena. I have a long way to go. I wanted to tell you that T2* is possible in the Netherlands, in my hospital now. [Although I won't undergo this test now. That's fine for me]

Ideally, chelation should never stop because the breakdown of red blood cells and release of free iron never stops. If you are monitored regularly, this is practical. If not, once below 300, reduction in chelation should take place, but many doctors will cease altogether to make sure iron stores do not get wiped out completely. Developing a chelation program like Lena's and Poirot's is ideal. Never stop if possible but the level of chelation should be based on ferritin levels and annual scans. Each patient's treatment program should be based on that patient's need, and frankly, all transfusing patients need regular chelation. It has been my observation that patients who take chelation breaks are those most likely to suddenly have a bad T2* score.

Totally agree with you, Andy and -according to my doctor- deterioration happens not only to heart and liver T2* but also to LIC  score that tends to increase rapidly once above 1.


Lena

Hi All,

Please advice me on my child's chelation. He is 2.9yrs and I am giving him 400mg Asunra daily 200mg afternoon and 200mg night. But his ferritin is increasing with 200 every 2 and half months when i check his ferritin. I consulted the doc yesterday and he said to give Desferal500mg  through drip for 24hrs immediatly next day after transfusion.when i went for transfusion today few other patients advised me to stop taking asunra and start with Desirox.....I started with Asunra in the month of June  2011 with 100mg then 200mg then 300mg and recently from 2 mnths 400mg. Now he is 14.5 kg.

Is Asunra not working for him???His ferritin now is 2500.

I am not going for Desferal tom as I am confused and need ur valuable advice.

Binita,

My suggestion is give it time. This same pattern is seen in patient after patient, and especially in younger patients where growth dictates a constantly changing dosage of Exjade (Asunra, Desirox). The drug is working but it takes some time to see the results in ferritin tests. Often, we don't see a downward trend in ferritin until a year or more has passed. Just make sure that the dose continues to increase as his weight rises. His current dose has only been used for two months, so realistically, you should not expect to see a lower ferritin level at this time. Many parents have made the mistake of panic and taken their children off the drug because they did not see quick results. Please have faith in the experiences of others and continue the drug, as long as there are no side effects that would prohibit continuing the drug.

Thank you Andy for your valuable advice and  I will continue the same medicine. His weight is 14.5 kg. Should I give him 500mg or stick to 400mg?

Andy sorry for the repeated question but desferal 500mg along with drip has been asked to give  only once  after transfusion and then to continue with Asunra as usual. Should I add on to Desferal for my child's  chelation or only Asunra should help. N Asunra should I give him 500mg as he is 14.5kg now.

Thank you.

Hi Binita,

The desferal drip would help, but I don't consider it to be essential. 500 mg of Exjade would not be too high for now. He will soon be at the weight where that is recommended anyway, and it would help the ferritin to drop more quickly. 400 is probably a bit low considering the current ferritin status.

when i went for transfusion today few other patients advised me to stop taking asunra and start with Desirox.....

Score one for the marketing machine of Novartis.

Binita, Asunra and Desirox are the exact same drug, chemically - except that Asunra is made by Novartis and costs a lot more compared with Desirox, which is made by Cipla. Obviously, Novartis also spends a "bit" more influencing the doctors about their "better" quality chemical.


Just thought that you should know and not waste money on branding.


Cheers