Thalassemia Patients and Friends
Discussion Forums => Iron Chelation Corner => Topic started by: maha on January 06, 2009, 07:58:52 AM
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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
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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
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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
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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.
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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?
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Help me a bit, please.
Asunra = Exjade ??
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Exjade=Asunra=Desirox=Osveral. All are the drug, deferasirox. Different manufacturers and different names but all are the same drug.
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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
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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 :wink
Sharmin
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Thanks Sharmin :blush :blush :blush :blush. I am just learning from you Sharmin and all of our friends, thanks my friend for everything i learn each day from you :bighug
manal
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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
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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
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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
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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.
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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 :hugfriend it just takes it's time.
Anymore questions or worries! we are here for you :hugfriend
Zaini.
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Exjade is available in 125 mg tabs. Is it possible to get them and keep the even dose of 375 mg/day?
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Hi Madisonmom
What is the dose of exjade given to your child
manal
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Because bacteria and viruses thrive on iron, the body will pull iron out of tissue and store it in serum ferritin during infections, like colds etc. This is not related to actual iron load in any way. It is simply a defense mechanism the body uses to minimize the replication of the infectious agent.
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the body will pull iron out of tissue and store it in serum ferritin
Very interesting to know that the body works like a chelator at some point ,Andy do you know what is secreted in the body that enables this to happen. Scientists should make use of this ability of self defense
manal
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This can't be considered to be chelation. Ferritin is used by the immune system during infection, and the excess storage of iron in serum ferritin is normally temporary. In those with iron overload, the body stores iron in serum ferritin to try to prevent iron damage.
What is the normal role of ferritin?
http://www.fpnotebook.com/Hemeonc/Lab/SrmFrtn.htm
An iron protein complex, containing up to 23% iron, formed by the union of ferric iron with apoferritin; it is found in the intestinal mucosa, spleen, bone marrow, reticulocytes, and liver, and regulates iron storage and transport from the intestinal lumen to plasma.
This is something every parent of a thal should know. It really helps calm the nerves when you are informed.
http://www.nature.com/ejcn/journal/v52/n5/abs/1600573a.html
Results: A significant shift of serum ferritin concentration towards higher values was observed in those who reported an upper respiratory infection with fever during the preceding month](P<0.001). Significant differences were found between serum ferritin values in healthy, not infected adolescents and serum ferritin values in those with ongoing infection, both in boys and girls in the two materials (P<0.01), and in those with a mild infection during the preceding three weeks.
Conclusions: The prevalence of recent infection should be included as information when trying to assess the prevalence of iron deficiency on the basis of serum ferritin measurements and when examining relationships between iron status and composition of the diet. The findings imply that differences in prevalence of iron deficiency between different studies might partly be explained by differences in prevalence of simple respiratory infections. The diagnostic sensitivity of the serum ferritin assay...decreases for subjects with recent such infections; similarly, there will be a decrease in the diagnostic specificity for haemochromatosis (a hereditary conditon which results in iron overload).
Although this context is about accurate measurement of iron in iron deficiency, the findings apply, as infection causes higher ferritin levels. Mild fluctuations in ferritin are not meaningful and low ferritin levels do not necessarily mean that organ iron is also low. Ferritin is not an accurate measure of organ iron, so other methods such as MRI, Ferriscan, SQUID and T2* are necessary to give a true picture. This also helps in designing an appropriate chelation program.
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Andy,
After how many years of transfusion should one get a ferriscan or MRI or T2*?
Zaini.
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Zaini, what i was told is as soon as the child can sit still and does not move in order to go through the procedure. And the frequency will be decided according to the results
manal
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But when i asked my daughter's hemo ,she said you don't need it right now ??? It's been almost 4 years she has been transfusing.
Zaini.
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Zaini, may be Andy can shed some light on this issue here, cause i know some children who have done a ferriscan and have been transfusing for for a short time too. May be it is different protocols as i find that many tests are required in the thal guidelines published by the oakland center that are not all done here
manal
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Hi Zaini,
My son had his first liver biopsy when he was 2 years old - and his second when he was 3. He had his first SQUID when he was 5 years old and second when he was 7 years old. His third SQUID test was done when he was 9 years old. His first T2* was done when he was 9 years old as well.
Part of the standard of care in the past was liver biopsies, thank god for the availability of SQUID now. Liver biopsy requires general anesthetic and not to mention the biopsy itself. They ask the patient to rest afterward, but my son was 2 when he had his first biopsy and he decided that it was fun to jump on the bed at the hotel room all day when he was discharged from the hospital. His first LIC was done when he had been transfused for 2 years.
We have never had a ferriscan so far.
His early results correlated very well with his SF.
Sharmin
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It may sound dumb,but what is a T2*?Kins of MRI?
Zaini.
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T2* uses MRI to measure iron concentrations.
If a child has chelated regularly, it is acceptable to wait until age 8 before doing a heart scan, like T2*. Liver iron builds up earlier than in the heart and some iron loading is seen as soon as one year after the beginning of transfusions, so liver testing should be done at an earlier age. However, because of the problem of getting a small child to sit still, it is common to wait until about 5 years old before having the liver scanned. Patients who are not chelating will have iron loading at a much earlier age, so scans would be appropriate earlier. Patients with high transfusion needs should also be scanned as early as possible. Some of the decision on whether or not to test involves whether or not anesthesia would be necessary for the child to be scanned. If it is not possible without anesthesia, the scan may be put off until a later age. This has to be accompanied by a full understanding of the importance of regular chelation.
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I think once she is settled with Asunra,i'll go for the MRI.
Zaini.
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Owh, I can only dream about that test. We do not have it hear, and i got the wrong port.
I hope your daughter is doing well with Asurna. I just went from 1125mg to 1250mg and I was doing well. I hope we both see soon good results. It annoys me that it does not come down. I want it soo badly, but I should focus on other things - if not I will drive myself crazy. :wink
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Hi Dore,
Little Z is doing fine with Asunra for now,Alhumdulillah,but i am anxiously waiting to increase her dose,as dose as low as 15 mg/kg is not much effective,after completing a month i'll ask her doctor to increase her dose.I am glad that you are doing dine with the new dose :) .
Zaini.
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T2* uses MRI to measure iron concentrations.
Can liver iron be measured with MRI? If yes,what is the test called?
Zaini.
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Hi everyone,
Just playing catch-up Layryn in my cousin and she has been on Exjade for almost 3 months now and she has not had any problems she is 2 yrs old. Olivia is almost five and is in her 2nd month on Exjade and no problems here. (so far).
Kathleen
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Kathleen,
It's great to know that both little dolls are doing fine with exjade :hugfriend.
Zaini.
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Hi
Hassan`s S F this month is 1858. It`s still high but his reading four weeks back was 3112. I should say its a substantial drop considering the fact that two days prior to tx he was sick and had severe cold , still has a bad cold.
maha
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Maha,
I am glad to hear that Hassan's ferritin is dropping. It is key to keep it below 2000 - and he is now in that range. Continued chelation will reduce it further. You have done a great job Maha!
Sharmin
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Hi
Its nine months of chelation now and his last ferritin is 2054. Prior to this, his SF reading was 1751 :-\. We went in for tx three days late this time coz the blood wasn`t ready and his pre tx hb was great at 10.6. All his reports are good and I pray I will be able to say the same for his ferritin sooooooon.
maha
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Maha,
I hope Hassan's ferritin will come down soon Inshallah,we are in the same boat,waiting for Z's ferritin level to come down.
Zaini.
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Hi
Its nine months of chelation now and his last ferritin is 2054. Prior to this, his SF reading was 1751 :-\. We went in for tx three days late this time coz the blood wasn`t ready and his pre tx hb was great at 10.6. All his reports are good and I pray I will be able to say the same for his ferritin sooooooon.
maha
I thought SF hadn't to do anything with thalassemia. I thought this test is only necessary for primary iron overload humans?
Maha, you know that SF must be done fasting? I try to fast with all of my bloodwork and let it down around the same time. In that case it's all a bit the same.
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Hi Dore
I just used SF for serum ferritin. I didn`t know there was actually another test abbreviated as SF. Hassan`s bloodwork is always at the same time, although he cannot fast as he has to take his exjade with juice.
take care
maha
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Dore,
Are you talking about Serum Ferritin or something else?
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Dore,
Are you talking about Serum Ferritin or something else?
Yes, I do talk about Serum Ferritin. You all never heard of doing this fasting?
What I do is that I take only Exjade, then bloodtest and then I have a sandwich cheese and a tea.
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No i have never heard of fasting before ferritin test and i don't think its the protocol,other wise lab people must have told me :huh.
Zaini.
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No, for ferritin it's not necessary but that's how I do it.
But Serum ferritin is something else. Atleast it's something else in the Netherlands. I will ask for the information where to find it and post it within a few weeks.