Hassan`s ferritin

Last june Hassan`s ferritin was 870 , 2 months later in aug his SF was 1500 nearly double. We were trying to get exjade but here only saudi nationals preferred for exjade. By the time we could register him in India and get Asunra it was oct. I started Asunra on oct 13. On nov-6 his ferritin was 2666. The doc said the sudden increase could be due to his infection. On dec 4 his SF was 2331( still had an infection), but atleast it was starting to decline. Now on jan2 his SF IS 3112. Presently we are giving him 300mg( had started with 250mg ). We are trying to fix an appointment with the hema to probably increase the dosage to 30mg/kg.
maha

Commenting on your post Maha,

*To get a real measure of serum ferritin, the body has to e free of any kind of infection because during infection, the ferritin levels increase and they don't reflect the reality

* Asunra, which is the exjade, works on cellular level where it chelates iron from the tissues/organs, this iron is released in the system first ( at this stage the serum ferritin reading is elevated than the true levels) then it starts going out through the body

* Usually when we start Asunra, we start with alow dose until the body gets used toit to eliminate chances of negative side effects then we gradually increase the dose. usually 30mg/kg is the chelating dose that should be reached and 20mg/kg is the maintance dose

* During your usage of asunra, kidney and liver function should be monitered

manal

Yes Manal, I know SF reading is elevated at the start and in the presence of an infection the reading is not accurate. So many many times this has been said in numerous posts, so I was not worried. Infact I had prepared my husband to expect an increase in SF. But once it started to decline I was expecting yet another decline. Alhumdulillah his liver and kidney function tests are normal. I pray for better results in the coming months
maha

Hi Maha,

How long has he been taking Asunra? I think you should wait for about six months for his ferritin to get down.If his kidney and liver functions are fine,then i think there is nothing much to worry about.

Zaini.

Hi Zaini
It`s about 2 1\2 months since he started Asunra. I know Alia also experienced some problems when she started Sara on exjade. It`s a long time since she posted. wonder how sara is doing now. Aysam too has problems. Is there any 2 year old doing well right from the beginning. Lauryn?

Help me a bit, please.

Asunra = Exjade ??

Exjade=Asunra=Desirox=Osveral. All are the drug, deferasirox. Different manufacturers and different names but all are the same drug.

Dear Maha,

It is still very early in the treatment.  The variation you have seen in ferritin levels at this time may not be significant because exjade is not likely to be effective until it is given at 30mg/kg.  You will notice the real changes once the effective dose has been given for a few months.  Again, as you are aware you may see some elevations in SF level because of the iron being removed from tissue into the plasma - and a decrease as it is excreted from the body.  Do you have access for ferriscan or SQUID?  These are the only non invasive methods to really determine iron levels in the body.  I am glad that Hassan has tolerated the 20mg/kg well. 

My son is on exjade/desferal combination therapy and enrolled in a trial,as you may know.  We will have our follow up appointment next months.  At that time they will repeat his SQUID and a T2*.  As per the SQUID test his LIC levels in July were 2880.  I am hopeful that the February results will show that his iron levels have decreased significantly.  I also hope that this trial determines that exjade/desferal combination therapy is safe and effective.  I think it would be great, especially in the early stages of exjade usage to have desferal remove the iron from plasma that exjade removes from tissue and organs.  It seems to be going well for my son so far.  I have heard that for many of the other patients in the trial (all of them had some iron overload to begin with) the iron levels have fallen very low and they are being taken off of chelation until their iron levels increase again.  *Of course, this is all under very strict supervision of the doctors and technicians in Oakland - and the monitoring is very constant. 

I hope that Hassan's iron levels decrease quickly once he begins taking the full dose of exjade.  Also, is Hassan taking IP6?  IP6 should help protect him from iron in his body. 

Best of luck and please keep us posted on his ferritin levels,

Sharmin

Commenting on your post Maha,

*To get a real measure of serum ferritin, the body has to e free of any kind of infection because during infection, the ferritin levels increase and they don't reflect the reality

* Asunra, which is the exjade, works on cellular level where it chelates iron from the tissues/organs, this iron is released in the system first ( at this stage the serum ferritin reading is elevated than the true levels) then it starts going out through the body

* Usually when we start Asunra, we start with alow dose until the body gets used toit to eliminate chances of negative side effects then we gradually increase the dose. usually 30mg/kg is the chelating dose that should be reached and 20mg/kg is the maintance dose

* During your usage of asunra, kidney and liver function should be monitered

manal

Manal,

Considering that you have not personal experience with chelation (and I hope that my little Ahmad never requires chelation) - you are an expert!!  This is great info!  You are awesome my friend 

Sharmin

Thanks Sharmin  . I am just learning from you Sharmin and all of our friends, thanks my friend for everything i learn each day from you

manal

Hi Sharmin
Hassan is not taking IP-6. Months..... back we had placed an order with puritans pride, and monthsss...... later the amount paid was credited back to our account. Saudi customs didn`t probably let us have it. I will ask about ferriscan and SQUID during my next appointment.
thankyou
maha

Maha,

It is too bad that customs did not allow you to order IP6.  We have the same issues with Lcarnitine here in Canada. 
We can actually purchase IP6 at pharmacies and health food stores here, do you think that it may be available there for you?  Perhaps by prescription?

Sharmin

Sharmin
We did enquire about IP-6 at pharmacies, they don`t have it here. GNC has only Inositol, when I said that we needed was inositol hexaphosphate, first they said both were the same. How can they both be the same? It took some chemistry to explain the diff to them. It`s only then that they said KSA regulates the import of many natural supplements that was the reason they had so few products in that store compared to GNC stores in other countries. I have been pestering Hassan`s dad to get it via India. Recently he has become over protective about Hassan. My baby has been demanding roller skates for a couple of weeks now. He wants to go swrooooom like big sis. His dad is just giving lame excuses. What if he falls? Well, if he falls he will get up again. He is scared to give him any supplement which the doc doesn`t agree on. It is going to take some convincing but like always I am going to win this battle too.

maha

Madison is two and a half and has been on exjade for 6 months now. Her iron levels were holding steady around 1300-1450 until this past month where it jetted up to 1700.  I started her on IP-6 (without M.D. approval) last week.  She is getting a transfusion tomorrow and has a pretty bad cold.  Should I not trust the serrum Ferritin level test due to the cold?  I'm starting to doubt the exjade.  We are going to slightly increase her dosage next week too. 

For the person inquiring about two year olds and the exjade. She has had zero side effects.

Hi,

When a person has cold or fever or any kind of infection,serum ferritin levels usually elevate,so please don't be alarmed,and please don't doubt exjade,she is having no side effects that's the best part,and her S.F levels will eventually go low,almost every member of our forum who started on exjade complained of high S.F levels initially ,bet they do get lower with time,you'll just have to be patient.I am sure it will work for your little angel  it just takes it's time.

Anymore questions or worries! we are here for you 

Zaini.