iron overload

Hi,my son has major thallasaemia.He is 14 and his weight is 25kg.I want todo combine therapy of ASunra and Ferriprox as his ferritin 1s 5500.uptil now he was taking 500mg of ferripro in the morning and 500mg in the evening.Plz guide me abt the dosage of both Asunra and ferripro. He also took 500mg of Asunra a day for almost an year but even that didnt work so i decided to do combine therapy.

Hi shaista,

The current dose of Ferriprox is too low. The normal dosage is 75 mg/kg, so at his weight, the dose would be 1875 mg daily. I think the reason chelators are not working is the dosage is not high enough. The combination of Ferriprox and Exjade (Asunra) is not approved anywhere that I know of, so there is no suggested doses of the two drugs. Can you tell me what his dose of Asunra was daily?

Thanks for reply.I am giving Mohib 600mg of Asunra two days aweek and 15oomg of kelfer 5days a week.I started this combine therapy few days ago.Shall i stop it.

I would say that if you are doing this with the understanding that all testing for side effects is faithfully done each month, then you can try it. Both Ferriprox and Exjade require regular testing. For Ferriprox, white cell counts must be closely observed. With Exjade (Asunra, Desirox) creatinine levels and ALTs should be regularly monitored.

thanks for concern.I monitor Mohib closely by doing all the required tests and so far he is doing well.I will post all the results when his tests will be condcted after 15 days.You didnt tell me that what should be the dose of Asunra and kelfer in combine therapy.Shall i give Mohib 2000mg of kelfer aday for 5days aweek and asunra 600mg aday for 2days.Is this ok.Moreover I am daily giving him 400mg of Calcium 500mg of Vitamin C,200mg of Vitamin E and 20mg of Folic acid. He also takes wheatgrass.Plz tell me if he needs someother supplement .or these are ok.

Since there are no recommendations regarding this combination and very little research into the combination, I have a difficult time advising you. Have you talked to your doctor about this?

unfortunately I donot know any heamatologist in Peshawar.I do all the medication either by myself or sometimes i get advice from Dr. Farrukhshah of whittington hospital inUK.I read about combination therapy at this forum so I thougt it might proved helpful for Mohib As well.

OK, all I can do then is tell you the proper dosage of each drug for his weight.

25 kg x 75 mg + 1875 mg Ferriprox daily. Maximun tolerable dose is 2500/day. 2000 mg daily would be appropriate considering his ferritin level. If this is the only chelator used, he should take this dose split for 3 times daily, 7 days a week.

25 kg x 30 mg = 750 mg Asunra daily. 800 would be fine at his ferritin level. So as not to interfere with his appetite, I would suggest splitting the dose into two and taking half in morning and half in evening. His low weight tells me that he needs help with his diet so that he is getting enough calories and nutrients.

Work out a suitable routine for his chelation. Make sure he takes one or the other every day. I would also suggest raising the folic acid level to 200 mcg daily. (I am sure he is not taking 20 mg because that is a huge dose. If I am wrong, correct me. Folic acid is usually found in mcg doses).

Getting his ferritin down now is essential as the iron load is interfering with his growth. Has he ever been on desferal?

Shaista,

The one thing I want you to remember is that we are here to help you. I want you to take advantage of this and continue to ask our help. I want your son to do better than he has in the past. Time is urgent because he is at an age where development is hindered by iron. Let us help you work to turn things around for your son.

Shaista,

I completely agree with Andy.  These are critical years in your son's growth and development.  Decreasing his iron now will allow his pituitary to work efficiently and allow him to grow and develop normally. 

Please keep us updated about his progress.  With combination chelation we were able to reduce my son's ferritin f2om 2800 to 700 in one year - it can decrease rapidly if you are compliant and on a good plan. 

Best of luck!

Sharmin

Shaista,


There is a way to help your son and do better. You must be devoted to his chelation right now and you will see good results. We are here to answer your questions. Please let us know of your moves - we are all here to support you.

Lena

Thanks  Andy,Lena And Sharmin.I am thankful to God that at last after 14long yrs of Mohib illness I found such nice and helpful Friends.I can say now I am at right place.Mohib started Desferol When he was just 2yrs old and he is still using it.Actually he is using all the chelating agents, defriprone,asunra and desferal.Sometimes combo therapy of Desferal and asunra,sometimes separately.I found Desferal best but its immense painful to use pump.So Mohib wants to take oral medicines.As about folicacid,company name is Zafa and on the bottle its written Tablets BP 5mg.Mohib takes 4tabs a day.So what does it mean.Please tell me about taking Vit.C with Exjade.

Shaista,


we are glad that you feel you are among friends here. As Mohib did, I have also taken all three medications and remained finally at the Ferriprox- desferal combination therapy as this has better results than the others. You see, ferriprox clears and protects heart and desferal clears the liver and is more helpful in high ferritins, as Mohib's, than Asurna. I know it is painful to use the pump - I have been using it for 30 years - but, believe me, it is the best combination therapy together with ferriprox. Ferritin drops sooner than the other chelation schemes.

What about your doctor? What does he/she suggest for chelation therapy?

We are at your disposal for any question you want to ask,

Lena

Lena,

There is no doctor in Peshawar who can advise me about Mohib chelation.In 2006 I took Mohib U.k where Dr.Farrukhshah did all the treatment regarding chelation and even now I do all the chelation therapies according to her advice.Can you tell me that whether or not Vitamin C be taken with kelfer.

shaista

There have been no trials of the effects of taking vitamin C with any chelator besides desferal. Thals do need vitamin C, but should limit their intake to about 100 mg for children daily, and 200-250 mg daily for adults.