Exjade dosage Vs. Desferal dosage

one more thing to add, i continuously have that feeling that chelators are not being effective on me (as indicated by urine colour). most of the time i dont get any colour at all even after 3 vials infusion and kelfer dose, why is that?
Is their anything like body resisting against chelators? if kelfer is not working, should i shift to Asunra or something?

Tariq,

Take vitamin C (100-250 mg) during the first hour when you start your desferal. If you can't find C, eat some C rich food like oranges or orange juice as a substitute. Even if you don't increase the amount of desferal you take, by taking it for more hours, you will chelate more iron with the same dose. Desferal should darken the urine, so see if there is any difference when you take it for a longer period. Not all of the L1 is seen in urine so that may not be a good measure. Also, take L1 every 6 hours for most effectiveness. So, if you take four tabs daily, take one every 6 hours. If that isn't possible, take it at least 3 times daily. The dosage should be 75mg/perkg body weight daily. Your dose might be a bit low.

Desferal is probably the safest of the three chelation drugs. Your doctor needs to learn more about this subject. It is well accepted by most top thal doctors that combination therapy using desferal and L1 is the most effective chelation, and depriving patients of desferal is a mistake.

Tariq,

Plz take care brother,start immediately with aggressive chelation,combination therapy is the BEST,so there might be something wrong with your dosage,calculate your dosage according to what Andy told you,try taking desferal at least 5 days a week and for once don't listen to your doctor,Take ABOCAL (half tab) after starting desferal,it contains,Vitamin C,Vitamin D along with calcium.

Start immediately and fiercely,we are here to support you and cheer you up.

Zaini.

Tariq,

Like Andy said, desferal is the safest and best documented drug of the three chelators - it has been used for 40 years now. 

Increasing the duration of your desferal is absolutely key. Maybe your desferal is not on long enough for there to be significant iron removal in the urine.  Desferal needs to be in the body for at least 8 - 10 hours before it removes iron.  When my son was on his lowest dose of desferal it was 10hrs/day 3 times a week.  If you have your desferal on for 10 - 12 hours (taking vitamin C in the first 1/2 hour) - you will definitely see red in the urine. 

Best of luck,

Sharmin

Thank you Andy, Zaini and Sharmin,

Your words mean a lot to me. I sure will follow your guidelines. Here is what i will do immediately.

Starting Vitamin E 600 I.U daily
Desferal 12 hours 4 vials 5 days a week
Kelfer 4*500 mg daily
Vitamin C 100mg 1/2 hour after starting desferal infusion

Then I will consult doctors here regarding ferriscan and SQUID, lets c if i can had it done, to get the better idea.

Your welcome Tariq,

Perhaps it would be best to do T2* and one of either the SQUID or Ferriscan. 

We are all here to help you get your iron levels down - lets get this started immediately - the more hours you have the desferal on the better results you will see.  I think that you will see a significant change within a few months if you get aggressive with the desferal 

Sharmin

Tariq,

Unfortunately,Ferriscan or SQUID are not available in Pakistan,if you can manage to travel abroad,then it might be an option for you,you can go to India for Ferriscan.

Zaini.

Dear Tariq,

Yes, ferritin isn't always a reliable measure - however consistently and over time it is an indicator of what your LIC most likely is. Because you are consistently getting values of 8500 - 9000 - chances are that your LIC is also quite high at this time.   Another indicator is that based on your transfusion volumes - your chelation dosages are much too low.  If you don't use desferal for at least 10-12 hours a night it will not benefit you. 

It can be very difficult when your doctor is telling you one thing but your own research is telling you another.  However, even with the best of intentions your doctor can be very wrong in this case.  Andy has met with the best doctors on earth - and the advise he gives you will be much more accurate.  Andy has connected me to the most prominent thalassemia center and doctor on earth - and the advise I am giving you is based on his research and experience. 

Managing thalassemia is a balancing act - balancing the risks and benefits of various treatments.  We need to balance transfusions for optimal health by weighing the benefits of good hg vs maintaining the lowest possible iron.   We need to weigh chelation the risks of iron overload vs. the side effects of the chelating agents.  etc etc. 

In the case of iron overload - the damaging effects of iron are much worse than the side effects of drugs such as desferal.  Once your iron levels are down - then the side effects of excessive desferal will outweigh the effects of the lower iron levels in your body - thus the chelating drugs will be reduced.  At this time the risk from iron overload far far outweighs the side effects of desferal or other chelating drugs.   This is my view of thalassemia - I know you will get many great opinions:) 

Sharmin

Hi Tariq ,
Sorry for being late to reply buddy ,

Minimum right now should be 12 hours/day, 5 days a week. Even better is if there are some days in which you can pump for 18-20 hours, because you are going to need to work hard to get your ferritin down

absolutely right ... here i want to say that i found that you are taking less dose than your requirements ... i m 21 years old 43kg is my wiehgt  ,my desferal has been reduced but i m still on old one doses , my doctor ( Dr.joveria manan ) prescripted me for the first time ,

desferal 3 vials  15 -20 hours
Ferriprox 9 tablets a day ...
vitamin E 1 tablet
zincat syrup  1 half tablespoon
De-Calc ( vit-d)  6 tabs  a day

you are elder than me and hope that your weight will b also a bit more than me ... soo to this point of view you are taking extremely less doses than your requirements ..
ask your doctor to consult to my doctor , i gues your doctor is practicing ( on training freshly graduated ) soo she need help of a highly well known doctor  ... pllease PM me or meet me on msn i will give you contact details of dr joveria manan may b she could help your doctor to stop making wrong decissions ...  secondly i want to say that reason of colour-less urine  should be low dose as well .. when-ever i tried a low dose it results the same you mentioned  ...
Zaini is right SQUID & Ferriscan is not available in our Country .....
i think we had talked about the duration as well , when i told you that i m on desferal therapy and i use to take 3 vials of desferals in 20-23 hours .... well buddy i think you need to have a look again on your plan , and make some changes ... go to Aga Khan Hospital bcoze that is the best place for thals not for only people living in karachi but the whole country... i know that several time Aga Khan labs collection center told me that they will send my sample to aga khan karachi for this test .... so please do care of your self buddy ... and have a visit of Aga Khan Hospital ....

if  i missed something to answer so please let meknow i will try to answer ....

Best Regards
Take Care
Peace
Umair

It took me 3 years to get my S.Ferrtin down from 9200 ng/ml to 317 ng/ml. With 279 ng/ml being my lowest. I was on optimum chelation and very regular with it. 3 vials of desferal 5 times a week and 6 capsules of kelfer a day.

Tariq once your S.Ferritin comes to 6000 ng/ml, you can start with Exjade. Many in my hospital who started off with Exjade have reduced their S.Ferritin levels upto 2000 ng/ml in one month.

Don't worry buddy, everything will be fine. You're a tough guy man!!


\peace/

@Umair

Thanks buddy for your suggestions

@Sahil

Don't worry buddy, everything will be fine. You're a tough guy man!!

Well you are right about that. and BTW tough guyz don't worry for anything, they just face it....

Well you are right about that. and BTW tough guyz don't worry for anything, they just face it....

Exactly man!! Thats the spirit! And I appreciate it!!


\peace/

Everyone

I do have one question, what is the recommended water for dissolving desferal, distilled water or Sodium Chloride water. can it change the effectiveness of desferal infusion?

bcoz i currently am using Sodium Chloride water 0.9% solution as recommended by our thal center here.

waiting for responses...

Tariq,

Depends how many deferals you use and what syringe you use. I would use 3 vials and 9.5 ml of distilled water in a 10ml syringe. 10-12 hours was my duration.


\peace/

1) could anybuddy gues that how much Iron we get with one unit of blood ??

umair

An average unit of blood contains about 250ml of packed red cells ie 250 x 1.16 or 290 mg of iron. For example, a patient weighing 40 kg receiving 3 units a month will receive 3 x 12 x 290 = 10440mg/year  = 28 mg/day of iron a day through blood transfusions.


Each molecule of DFO (Desferal) binds one atom of iron, forming a very stable complex. Theoretically, 1g of DFO can bind almost 93mg of iron. In reality, only 10% of the drug binds iron before excretion. 

Taken from http://medicine.nus.edu.sg/paed/academic/HO_iron_chelation.htm