Chelators and effectiveness (Desferal, Exjade)

Qiji, you are most welcome. 

The following tests must be done every 3 to 4 weeks if you are taking exjade - and if you are taking exjade/desferal combination therapy (under the supervision of your doctor):

CBC
Urine Protein
Urine Creatinine

Metabolic Panel including the following:
Sodium
Potassium 
Chloride 
CO2 
Calcium
Glucose
BUN
Creatinine
Total Protein
Albumin
Bilirubin
SGOT / AST
SGOT / ALT
Alkaline Phosphatase
Ferritin

Qiji, I will also put this in an email for you. 

Sharmin

Qiji,

Please also note, that as per studies conducted by Dr. Elliot Vichinsky and others regarding exjade - and as Andy has advised in his post on this thread - exjade is only effective if taken at the dose of 30mg/kg daily - and it does take time for it to be effective. 

I can understand that the cost is high, but if you do not take it this way then whatever money you do spend on it may be wasted - as the drug may not be effective at the lower dose.  Taking it for a good 6 months at the adequate dose may lower your iron enough for you to continue taking desferal afterwards.  But you must make sure that you can use the desferal 12hours a day.  Do you have access to a smaller pump that you can keep on during the day?  Some pumps are small enough that you can put them in a fanny pack and they are very little hassle to have on during the day. 

Again Qiji, I am here if you have any other questions or require any other assistance.

Sharmin

Hello Sharmin

thanks for all you do, I will take exjade 1 month to test and if it will be good and dont make to any effects, I will take it continously, I dont care for the price.
as a first time I will take 20 mg/kg as my doctor say and then I will take 30 mg/kg.
today I did the analysis that you sent it to me and I will take a result tomorrow.

thank you again

best regards
Qiji

Qiji,

Best of luck beginning this therapy.  If your body tolerates it well it can be very very effective.  I am glad that you are having all of the labs done - they will provide useful information to your doctor regarding the effectiveness of the treatment - as well as how well your body is tolerating it. 

1/10 patients notice a rash a short while after beginning exjade, others may have kidney related symptoms - but it does not happen to everyone.  Most patients tolerate exjade very well, other than nausea during the first few weeks of use.  The nausea usually subsides over time.  During the first month, when you are using the lower dose (20mg/kg) of exjade you may not notice any change in your iron levels.  Some people notice a spike (increase) in their ferritin levels which is a result of exjade removing iron from their organs and releasing it into their blood stream.  The benefit of desferal is that it is very efficient at removing the iron from the plasma so you may not experience an increase in your ferritin level.  Be sure that the synergistic effects of exjade/desferal are working to reduce the iron load in your organs and plasma - but for this to occur and for you to experience benefits it will take a few months.    Do you have access to a SQUID test or ferriscan to measure your liver iron concentration?  This would be an actual measure of iron stored in your liver, and a test 6 months later would confirm the actual benefits of the therapy. 

I think that as you have the necessary labs and that your doctor will be closely following you - you will have good results from this therapy.  Also keep a record of your transfusion frequency and volumes (how much blood you get at each transfusion) during this time. 

Once again good luck,

Sharmin

Hello Sharmin

 I want to ask you when i take Exjade the Sodium, Potassium and .... it will come up or be come down  ( for more info. ).



Best
Qiji