Phosphorus and Exjade

Hello Fellow Friends,

We visited the hospital today and received some latest information re. Exjade. My daughter is taking the exjade for almost five months now and her phosphorus level came low today. We are told that Exjade infact lowers the phosphorus in the body and as the drug is relatively new, long term effects of drug are starting to come out.

Exjade users should use food rich in phosphorus e.g. Eggs, Milk, Cheese, Waffles etc.

One more piece of advice for children who complain about tummy ache in the morning, should use exjade half and hour before dinner time.

Thanks.

C.F,

Thanks for the info

Thanks for sharing the info 

Making a note of quite a few things to expect when on exjade. The hema said Hassan could start exjade once his ferritin reaches 1000mg.
maha

Hi CF
Hassan`s phosphorus came a little low this time. Is your little girls phosphorus in the normal range now? Two glasses of milk is the max  I can run around with. Cheese - he likes cheese slices, and eggs he eats only the white. I am glad you posted this info as  I could relate the drop in alkp to exjade and someone said online forums were not useful
maha

Hello,

What is phosphorus and what does it do?

Hi Dore
Phosphorus is an essential element required for bone development along with calcium. You usually get all your phosphorus from diet without any supplementation. Phosphorus also improves blood circulation. This is what one hema told me, but she was the same who said when phosphorus levels increases calcium is lost in the urine, but to the contrary like Andy had quoted in one post increased phos levels results in decreased urinary excretion of calcium . .
maha

I have answered both questions in two different threads. Please see the responses below.

Maha,

One more piece of advice for all those who are taking exjade. Please don't take high calcium diet three hours before and after taking exjade, studies have shown that will cause phosphourus deficiency in the body. If you remember my daughter immediately shown phosphorous deficiency when she started exjade last year, this was reported in other children. Hospital for Sick Children, Toronto did a study (on behalf of Norvatis, Canada) to confirm the findings. My daughter phosphorous is normal since then.


Dore,

A quick search on internet revealed the following definition:

What is Phosphorus?
Phosphorus is second only to calcium as a mineral in the body. Phosphorus is present in bones and teeth and combines with calcium to form calcium phosphate which is the substance which gives the skeleton rigidity. It is also present in every cell in the human body and in the body fluids as well.
 
Function

Helps build strong bones and teeth
Essential for healthy cell membranes
Essential for the conversion of food into energy
Essential for healthy metabolism
 
Hope this helps.

Thank you, it does help. The main problem is the language in this case. I forgot the whole time that we call this fosfor in Dutch. I never heard something talking about fosfor to me. It can be me though. I will ask around of someone did hear about fosfor and Exjade. I always thought that 'fosfor' was toxic.

Patients on Exjade should be checking their Phosphorus levels regularly?

Zaini.

Canadian Family,

Thank you for this information - as you are a pioneer with this drug amongst our members.  My son began exjade July 30/08 - and I have been following the advise that you have been providing.  Hydration and taking calcium supplements at least 3 hours after exjade. 

My son has that following tests done monthly to monitor for exjade side effects:

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

Is the alkaline phosphatase test the test for phosphate?

Thank you:)

Sharmin

Sharmin,

That is a different test and is part of the liver panel of tests.

http://home3.inet.tele.dk/omni/alttest.htm#alkaline

ALKALINE PHOSPHATASE

Produced in the cells of the bone and liver with some activity in the kidney, intestine, and placenta, it is mostly found in an alkaline state with a pH of 9. Used extensively as a tumor marker it is also present in bone injury, pregnancy, or skeletal growth (elevated readings). Growing children have normally higher levels of this enzyme also. Low levels are sometimes found in hypoadrenia, protein deficiency, malnutrition and a number of vitamin deficiencies.

Normal Adult Range: 20 - 125 U/L
Optimal Adult Reading: 72.5
Normal Children’s Range: 40 - 400 U/L
Optimal Children’s Reading: 220

The test for phosphorus is a serum phosphorus test, which measures the amount of phosphate in the blood. it is described here.
http://www.drugs.com/enc/serum-phosphorus.html

Thank you Andy,

In that case my son has not been tested for phosphorus.  I will ask our doctor to test his phosphorus levels. 

Sharmin

Canadian Family,

Hospital for Sick Children, Toronto did a study (on behalf of Norvatis, Canada) to confirm the findings. My daughter phosphorous is normal since then.

do you have any idea if this study is published and can be reached or not??


Thanks
manal

Not sure where it can be found or published, we were told verbally by our doctor. We were also told that the findings were communicated to Norvatis, Canada. Whether Norvatis is pursuing it further or not I don't know. Most of the time patients have very little access to the information between the hospital and the company.