What's your ferritin level?

SF,
Osteocare Chewable and Tablet's Formaul is same and fullfill's the RDA of Vit-D , Calcium, Magnessium and upto 67% zinc ... and also contained with other minerals .. for complete details check out these links ...
http://www.vitabiotics.com/Osteocare/chewable_formula.aspx
http://www.vitabiotics.com/Osteocare/tablet_formula.aspx

for sure :RDA = Recommended Daily Allowance ...

as for L1/Kelfer/Ferriprox  : Ferriprox is now available in Liquid form as well , Please check :
www.ferriprox.com

i m not experty of this site , soo, please Wait for Andy's reply and others too ...

Best Regards
Umair

SF,

I think you should start IV desferal again,until you can get L1.

I personally think that your calcium and Viatamin D intake is not enough,my 8 years old daughter was taking 600 IU vitamin D daily and still her test showed deficiency,i think you should be taking 1000 IU daily,a thal's body looses vitamins faster then a normal body,lets see what Andy has to say about that.

Your zinc intake is not enough either,you should be taking 20-25 mg zinc daily.

And start taking Vitamin E,Its a great antioxidant,but make sure that its natural not synthetic.

Zaini.

I would suggest either switching altogether or adding a cal/mag supplement that has calcium and magnesium in no less than a 2:1 ratio. I like the trace minerals in the supplement you are now taking, so either keep that and use a cal/mag supplement also, like this one
https://www.puritan.com/calcium-supplements-001/cal-mag-citrate-007670?np=1
or switch to something like Osteocare. You should be getting a minimum of 1000 mg calcium and 500 mg magnesium daily.

The oral Ferriprox solution is not yet available in the US. They're hoping for 2011-12 if the tabs are approved in the US.

Thanks Umair, Zaini, & Andy for all your suggestions. I'll get another brand of supplement to go with my current one while it lasts.. Once over, I'll look into switching.

Andy, do you know of any clinical trials/study in the US where the liquid L1 is being used? I know it's not approved, but docs may be using it in some clinical trials (just like the L1 tabs were being used in the US over the last couple of years)? 

We probably won't see any availability of oral Ferriprox solution in the US until Apo Pharma gains FDA approval for the tabs.

I see... Thanks, Andy!

aaaaaargh!
This is really frustating, I had my ferritin level down to as low as 300, however recently I had to increase the frequency of my transfusions. I am now receiving 3 units of blood every 2 weeks, because my pre transfusion hb was usually quite low. Now my pre transfusion hb is very good, however my Ferritin level has shot up dramatically to 2000.
I am also taking 12 tablets of ferriprox per day.
Any ideas on how to bring my Ferritin level down???
Preferably without taking Desferal!!!!
Maybe I should just go back to receiving less blood than before.

Hi Sajid ,
 its nice to see you posting , i hope you will conteu this and will remain in-touch with us ... i hope you'll the answer for your Q really soon just wat a lil bit ...  well, if you dont want to start chelation with desferal then i think you've only 1 choice to get ride of your iron levels , and that is Asunra/Exjade of Novartis , its an oral chelator , daily once a day is its dosage .. please wait for some senior members to come in scene and reply to your questioon ... stay in-touch with us and keep posting , feel free to ask anyhing you wana know abt ....

Best Regards
Take Care
Umair

Hey Sajid,

Good to hear from you. How's life in the UK? (Sajid was one of the first thals I met at the old MSN group).

Short term, you should consider adding a couple nights per week of desferal. This would help with the immediate ferritin issue. Long term, you need to find out why your blood demands have risen. Is this caused by an antibody reaction? If so, has prednisone been tried yet? Also, make sure you're getting some supplemental help with B complex, vitamins D & E and maybe even a calcium/magnesium supplement.

Hi
 my son Abdulwahab F.level now is 500 without any drugs or desferal i think he used this high F. to build his body ... any comments 
                               khalifa
                      state of kuwait

Congratulations Khalifa, that is really wonderful news

manal

Khalifa that is great to hear.  Best wishes to Abdulwahab 

Sharmin

Sajid,
Welcome Back!!


Khalifa,
Depending on how long your son has been off of a chelator, the ferritin may or may not be accurate. In other words, it takes time to see effect of chelation or no chelation in serum ferritin. So, it may be that you just haven't seen the effect of not chelating, in the blood. May I ask why he's off of Desferal or any other chelator?

Otherwise, it is indeed a good news that your son is able to keep it that low without any chelators! Congrats!

Regards,
SF

Khalifa's son is cured after a second bone marrow transplant and his ferritin has slowly dropped without any chelation or bloodletting. It was a very rough time for the boy for three years after the BMT, but now he is doing well.