Ferritin level gone up

Hi all
and happy new year

I wish all of you best of there health.

I want to ask regarding chelation . Ambika's ferritin level has gone to 375.15. She had got till now six transfusions . So  tell me what should we have to do now . She is now 10months old.


regards
Rupali

Hi Rupali,

Thanks for the wishes!

Your baby is still too young to start chelation therapy. Normally it doesn't start till she is more than 2 years old and her S.F gets around 1500

Hello,

Happy New Year to you too, no need to worry on ferritn at this point. I think the chelation therapy starts after 10-12 transfusions, so you got time and your child is very young.

Regards

Hi Rupali,

As the others have said it is too early to consider chelation. What you should be doing now is preparing for that day by comparing the chelators available to you, most likely desferal or kelfer, and which you will choose. You have plenty of time to talk to the doctor and decide which is right for your child.

oh goody, i was thinking to start this topic , my daughter is now almost 2 years old and has had around 17 transfusions. her ferritin is 979,  should i wait for it to get around 1500 or should i start iron chelation now.but i think she is going to give us a lot of trouble. how did any of the other parents did something anything to make it easier for the child to start the therapy???   can some one guide me what is the difference between defresal and kelfer any previous posts on this???  is the one better than the other???

Thanks
and regards

Hi Mr. Tariq,

Desferal is injection (ideally) given slowly by infusion pump in the sub-cutaneous layer under the skin. While Kelfer (available as Ferinil in Pakistan) are the oral tablets.

Desferal has been used for many years and is the most commonly used chelator while Kelfer is relatively new and is used under regular supervision of blood counts.

Both are well reputed and the optimum result comes by using the combination of both as Desf. is known to remove Iron better from the liver while Kelfer from the heart.

Your child is small too. I suggest you ask your doctor about the proper time and S.F levels before starting chelation.

Thanks   

Dear all

Thank very much for your reply

Please tell me one more thing chelation is a painful procedure or not. if once chelation has been started how often it has to be used and what are its after effect.

regards
Rupali

Hi Rupali,

It depends which method you want to follow. Like I said Desferal is an injection; (ideally) given slowly by infusion pump in the sub-cutaneous (sub-Q) layer under the skin but it can also be given via the I.V drip. However, the slow sub-Q infusion is more efficient.

Kelfer and Exjade are the oral tablets.

Therefore, the oral tablets are more compliant and preferred if you want to avoid pain.
Chelation is life long until there is a permanent treatment of blood transfusion because it is the chelation that removes the excess Iron that comes with the blood.

As for the side effects, every drug has some in some cases. It is not necessary that everyone will have to face the side effects. Most of the time it is just a mild one and can be cured by lowering the dose. You should not be worried about them I will list the rare serious ones just for your knowledge but remember it is not necessary that they will happen to everyone.

Desferal is known to effect visual and audio senses if given in large doses in rare cases.
Kelfer is known to decrease the levels of zinc, white blood cells and platelet in some cases so they are monitored with it's use.
Exjade causes temporary mild rash and upset stomach in some people and increases Serum Creatinine in patients with renal issues.

Again, these are very rare and are listed just in case if there is an allergy issues with them for some patient. Even common pain killers have side effects mentioned so these are not to be alarmed about.

Mrtariqkhan,

In my opinion it is the right time that you should start the chelation therapy for your daughter, I am weighing in following information you have provided:

1. Your child has had 17 transfusions so far (Chelation should start after 10-12 transfusions).
2. Your child is almost 2 years (Chelation begins at the age of two years).
3. Your child has a ferritin of 979 (This is high as per her age, please note for a normal person the ferritin levels are much less, if I remember correctly it is around 150-200).

You don't want to wait until it gets worse and now is the right time. I am not debating which chelator you should use, that is between you and your doctor but the point is to start the chelation right away.

Thanks

To those parents preparing to chelate their children for the first time, please look through the threads in the Iron Chelation Corner, and read the relevant postings. http://www.thalassemiapatientsandfriends.com/index.php?board=5.0

You should prepare yourself for both the usage of the chelators and also for all the emotional and psychological issues that can be involved, especially if desferal is used. Desferal involves inserting a needle under the skin for 12 hours or more at a time, 5-6 nights per week. This can be very hard for young children to accept and very difficult for parents to go through also. Reading these previous posts will make you aware of the problems and also the very many excellent solutions that have been offered by our members, who have kindly shared their experiences.

I think some very important advice to all of you is to be prepared so you know exactly what to expect once chelation begins. Talk to your doctors about what choice of chelators you have, but very few doctors will have the wealth of information found on this site concerning the actual use of chelators, so please pay much attention to what your fellow members have posted.