Thalassemia Patients and Friends

Discussion Forums => Thalassemia Major => Topic started by: sagar1 on June 12, 2019, 04:41:37 AM



Title: chelation
Post by: sagar1 on June 12, 2019, 04:41:37 AM
Dear Andy
Request for your expert advice on the below matter
My son age 20 years weight 62 kgs have low ferritin level of 606  but his T2 MRI shows severe iron in liver and pancreas.
Doctor has adviced desirox 500mg 5 tablets daily @ 40mg per kg and kelfer 500 mg 8 capsules daily – combination therapy.
Pl. advice whether the above dose is right for him at such low ferritin or I should reduce on kelfer.
Shall be thankful for the your expert advice.


Title: Re: chelation
Post by: sagar1 on June 18, 2019, 10:40:48 PM
Can somebody give advice on above


Title: Re: chelation
Post by: Andy Battaglia on June 22, 2019, 04:10:49 PM
Was an MRI of the heart also done and if so, what were the results?


Title: Re: chelation
Post by: sagar1 on June 24, 2019, 05:47:06 AM
Dear Andy

Yes, MRI of heart was also done. Its clear from iron.

Readings of report are given below.

Organ T2* (ms) T1 Loading
Heart 36.2 1144 ms None
Liver < 1 - Severe
Pancreatic 6.2 - Severe
Pituitary 21.2 Absent
Absent myocardial, severe liver and pancreatic iron loading is seen.Pituitary iron loading is
not seen.

Please advice.


Title: Re: chelation
Post by: Andy Battaglia on June 27, 2019, 04:56:10 PM
Yes, I think the combination is the correct approach. I also suggest a good antioxidant be taken daily to help protect his pituitary from the eventual damage that is seen in thals as they get odler.

Can I ask what his chelation program has been up to this point? I hear about many similar cases with no cardiac iron load and a heavy iron load in the liver. I'm looking for anything in common that might help explain this.


Title: Re: chelation
Post by: sagar1 on June 28, 2019, 10:47:04 PM
He was only on kelfer therapy for all these years. Desirox has been started just last year. Doctor has adviced maximum dose of 40mg per kg for desirox to remove iron from liver. With this kelfer is also to be given so that iron is not accumulated in heart. Doctors saying dont go by ferritin level. If it falls upto 200 there is no problem.
He takes fresh wheatgrass juice on daily basis. One 5 mg folvite tablet and 1 tablet of zinc.

Can u suggest which best antioxidant should be taken ?

Thanks


Title: Re: chelation
Post by: Andy Battaglia on July 06, 2019, 01:06:35 PM
Natural vitamin E is a great antioxidant. Check the label. Natural says d-alpha tocopherol. Synthetic E says dl-alpha tocopherol. Only use natural E.