Desferal

Thank you Andy....I think I used to mix up to 4 small vials with 20 mls saline, cant remember how much in each vial. But if the desferal was reduced we still used 20 mls saline.

The small vials are 500 mg, so 20 ml would have been correct for 4 vials.

Thanks Andy 

The ratio of desferal to water should be 10 ml water for every gram of desferal. If you are using less, it will cause more irrittation. It is allowable to use more if the desired length of chelation is longer, but don't use less than this ratio.

Thanks Andy i use 10ml of water for 1 gram desferal.
thanks
Alia

Thanks emby
I live inn newzealand sara and my other 2 boys were born here. we hardly got anyone with thal in here,only few people. Even the doctors are not experience enough to treat thallassimia here. but they good and doing their best. so always need support with her ongoing treatment.
Alia

There may be some more forums out there but this is definitely the best forum for support, advice or just generally letting off steam... ....it's been a massive help to me. Although we have a good set up in our city regarding thal I can honestly say that I can put alot of trust and expect a whole lot of sound advice from Andy and co ( thank Allah for them! ) Hope Sara's treatment and its effectiveness gets better and better.

Hi Emby,

Also please let us know the results from time to time. So if needed, I can possibly try desferal as well.

Pratik.

Hi Pratik.......after reading your posts I think the best thing to bring your ferritin levels down is using both Desferal and Ferriprox together. you would have to take the maximum amount and it would definitely come down. I think this would help to lower the amount of meds you need for the Diabetes too. Perhaps you can look up some of Umairs older posts...I'm sure you would be inspired.  
I would have posted it but I can't find it...his user name is Nice Friend.

Actually I have found it..........
http://www.thalassemiapatientsandfriends.com/index.php/topic,1689.0/highlight,nice+friend.html

Hi Pratik.......after reading your posts I think the best thing to bring your ferritin levels down is using both Desferal and Ferriprox together. you would have to take the maximum amount and it would definitely come down. I think this would help to lower the amount of meds you need for the Diabetes too. Perhaps you can look up some of Umairs older posts...I'm sure you would be inspired. 
I would have posted it but I can't find it...his user name is Nice Friend.

Actually I have found it..........
http://www.thalassemiapatientsandfriends.com/index.php/topic,1689.0/highlight,nice+friend.html

Hi Emby,

I am seeking to consult an hematologist as soon as my exams end and also consider the combination of defriprone and Desferal. Nah, and I am neither a sad boy. I always stay cheerful.

I don't fear death. With that being said so, I would be just sad that despite of being a Thal Major, I don't want to die soon unless I've helped good sum of Thal Majors. I've started my mission.

Cheers,
Pratik.

Hi Pratik........death is a sure thing. It will come regardless of Thal or not....but I'm sure you helped a whole lot of people already...and amongst them the the ones you have helped the most and who must be the most proudest is your Mum and Dad, just as we are with our boys.

Pratik,

If Asunra does not work to lower your iron load, the combination that Emby suggested is well known to be the best therapy for reducing iron load in thals. For some patients, the Exjade drugs work fine for maintaining an already low iron load but not so well in lowering a high iron load. This is why 40 mg/kg is suggested for patients battling a high iron load, but that can only help patients who can tolerate the higher dose. If you can tolerate that dose (I would suggest splitting it into two and taking it twice daily to reduce side effects and increase efficacy, as it results in a true 24/7 chelation regimen).

Anyone else think that Novartis should reward thalpal for developing and testing the twice a day regimen? If not for parents like Canadian Family, this wouldn't even be a known option. Many patients have managed to stay on Exjade and achieve better results due to splitting the dose and Novartis should be very thankful to thalpal for our efforts in helping patients use their drug.

Yes I very much agree to you Andy. Thalpal is already doing a great job. As I concluded on my earlier posts, I have already started taking splitted doses from today. Lets see how it goes. And I am taking 800 mcg in morning and 400 in evening, is that fine or I should switch 400 mcg in morning? Also I am now avoiding use of aluminium or metal and instead using glass.

Pratik,

If Asunra does not work to lower your iron load, the combination that Emby suggested is well known to be the best therapy for reducing iron load in thals. For some patients, the Exjade drugs work fine for maintaining an already low iron load but not so well in lowering a high iron load. This is why 40 mg/kg is suggested for patients battling a high iron load, but that can only help patients who can tolerate the higher dose. If you can tolerate that dose (I would suggest splitting it into two and taking it twice daily to reduce side effects and increase efficacy, as it results in a true 24/7 chelation regimen).

Anyone else think that Novartis should reward thalpal for developing and testing the twice a day regimen? If not for parents like Canadian Family, this wouldn't even be a known option. Many patients have managed to stay on Exjade and achieve better results due to splitting the dose and Novartis should be very thankful to thalpal for our efforts in helping patients use their drug.

Yes
I definitely think that Novartis must reward thalpal for developing and testing the twice a day regime. or they should give discounts on Asunra / Exjade to patients.

Hello All,

Hope are doing good and best of health.

We are giving Desferal to my daughter 6 nights a week, 10hrs each night. Her weight is 15KG, she is 4 years old.

We are giving her desferal with recommended dose of 600mg and 100mg of Ascorbic acid before we start the cleation.

We are noticing that her Urine colour doesn't change next morning. It remains same all day.

Same thing was happening 2 months ago when she was on 425 g dose.

When we raised this issue to doctors that her Ferritin level was not going down from 2500, they have increased the dose from 425 to 500 then gradually to 600mg.  Increased dose worked and gradually her Urine colour started getting redish and her Ferritin level also gone down to 2000.

This gave us confidence that desferal is working but now again the Urine colour is not changing since 3 weeks and I have a doubt that her Ferritin level was actually down this month or not.

Is it true that if Urine colour is not changing that means the Iron Cleation is not working effectively?

Wish you all good Luck and heath,

Best Regads,
Atin (Aadvika's Father)