Discussion Forums > Working Towards a Cure
The Carao Trial - How effective is it & who benefits most etc.
Zaini:
Hi,
I am sure it must be hemolysis ,to tell you the truth when ever my hb is low i also feel short ness of breath and a burden on chest.
Andy,
I think you were right about her dosage of ferriprox and desferal as her ferritin came almost similar,few months back it was 1232 and now it's 1259,so i think we need to re check her doses as she has also gained a bit of weight,her weight is 28 kg now,unfortunately i didn't go to hospital for some reasons today,so i have asked my husband to throughly discuss it with the doctor,but what do you say what her dosage should be?.
Manal,
Thanks a lot :hugfriend
Zaini.
Andy Battaglia:
The formula for Ferriprox (L1) is 75 mg/kg daily, taken over 3 doses. 75x28=2100, so 2000 would be the normal dose. The doctor monitoring Zainab should be the one to approve this. If she is tolerating it well and has no drop in white cells, the doctor will probably adjust the dosage as she grows.
Something of interest I learned about at the Apo Pharma booth at the conference was that they have released Ferriprox Oral Solution. It is a liquid form of deferiprone (L1) and has tested for far fewer instances of gastric complaints. It is available in a few countries and is going through the approval process in others. Hopes are for a late 2009 release in Pakistan. This should be much easier for children to take.
Sharmin:
Andy,
Once the hg drops to 95 - 90 the body begins to retic. Blood tests at this level often reveal some reticulocytes. When the marrow is higher the bone marrow is usually suppressed, I wonder if the children feel this way as their hg is falling to 10 because this is when the marrow begins to get signals to "kick in". If this is the case, children may actually be aware of a strange sensation in their bodies - perhaps the adult patients would be better at describing it. I think our children are now old enough to realize something is going on, but not old enough to know how to explain it to us. Maybe they have always experience this, but they were not as 'aware' as they are now becoming that changes are occurring in their bodies. The breathlessness is the worst symptom, I believe I have felt what you describe too Zaini.
Andy, is this a possible cause of the strange feeling during the last week before tx?
Sharmin
Zaini:
Well, The ward doctor didn't surprise me by saying that everything is fine and we don't need to change anything, :mad according to him 1259 is the lowest ferritin level he has ever seen in any chronically transfused patient. I am going to talk to her hemo,but to be very honest she is not much help either,i'll be the one to remind her that the L1 dosage is 75 mg/kg and we should chnage the dose according to the weight and quantity of blood,and then she'll just sign it to make it official :mad,or may be she'll say the same thing, who knows? some times doctors annoy me so much i wanna yell at them.
Zaini.
Andy Battaglia:
Zaini,
What you said here is common. In many countries, doctors don't base their idea of what an acceptable ferritin level is on what is best, but what has been practical for patients in that country to achieve. This has been greatly influenced by the cost of chelation and the problem getting patients to comply. I have commonly heard that doctors tell patients that a ferritin level below 3000 is acceptable. We know that long term this is not true. But it has been the best doctors could hope for in patients so they have accepted it. As chelation has become more available and easier to comply with, doctors need to adjust their thinking. We all know that getting below 1000 is the goal of chelation and that the work involved getting there is well worth it.
Patients and parents all have a basic right to know everything about the medical conditions that face them, regardless of what some doctors or even governments, such as in Singapore, may believe. Many doctors find it annoying and a challenge to their egos when patients know more than they do, and try to deter patients from becoming informed. Don't be deterred. Dr Marwaha was very disturbed that patients were not given access to medical talks in Singapore and he said that the parents know more about thalassemia than the doctors. If only more doctors could be like him. Parents have to be firm and demand the best for their kids. Ferritin readings can be misleading and we know that working to keep it consistently low is very important. Insist that your child can do even better. Maybe you can convince the doctor that this is how all patients should feel.
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