especialy to Andy question abt chelation

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Offline Andy Battaglia

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Re: especialy to Andy question abt chelation
« Reply #240 on: April 20, 2010, 04:42:54 PM »
Just for clarification for anyone who doesn't know this. Exjade, Asunra and Desirox are all the same drug (Deferasirox).

Viji, I hope the split dose helps. 500 mg is quite high for the weight of the child.
Andy

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Offline Waleed

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Re: especialy to Andy question abt chelation
« Reply #241 on: April 26, 2010, 04:54:56 PM »
Hello Umair,

Congratulations on your Ferritin value.A big applause for your efforts with dedication   .

Thats an amazing news that you brought down your serum ferritin from 13,000 to 400 approx.kuddo to your efforts  .u

God Bless you, Umair.

I need some advice from you ,Andy and other friends you were able to keep a check on their Ferritin levels.

My daughter samyuktha, 3.5 years old ,12.30 kg weight had her ferritin count at 2181 ng/ml on January 2010.She is on Asunra 200mg for more than a year now.Her Doctor had increased her Asunra dosage from 200 mg to 400mg/day in the month of January .There was an alarming rise in her SGPT and Creatinine levels with in 2 weeks.She decided to reduce the dosage back to 200mg.But still her SGPT level remained above the normal range.We took her LFT  last week.The values were;

serum creatinine= 0.8 mgs/dl

SGOT= 88.0 U/L

SGPT= 110.0 U/L

To my utter dissappointment her Ferritin has jumped from 2181ng/ml to 2944.4 ng/ml   .

I am so worried.I am planning to see her haematologist coming Monday with the reports.Samyuktha will be starting her schooling from June.I wanted her Ferritin to be below 1500 ng/ml . But....

Friends kindly help me in bringing down her ferritin values.what should i do?



its a matter for gr8 attention. My friends in lahore pakistan have stopped taking asunra because it raised their ferritin to great extent. in the start my friend was saying to have risen Fe from 3000- 6000 (even higher than that in other friends) and he said me a theory i cudnt get, that asunra first takes out iron stored in organs into blood stream and then excretes it...and that dialogue became a great laughter for all of us later on when that iron taken onto blood stream never excreted though hehehe and our hematologist has also advised to stop asunra  . And it has led to other negative opinions that the product specifically produced and sold with such a lowcost as compared to its other versions in Europe,  is fake and involves corruption. Asunra has lost its credibility in Pakistan.
Waleed

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Offline Andy Battaglia

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Re: especialy to Andy question abt chelation
« Reply #242 on: April 26, 2010, 06:33:07 PM »
I would like to hear more from patients in Pakistan about Asunra use. The most common reason it doesn't lower the ferritin is that the dosage is too low. If it is not 30 mg/kg body weight, it is highly unlikely to lower the ferritin in patients with a serious iron load. Many patients have quit Exjade/Asunra/Desirox because they never reached the required dose. Doses as high as 40 mg/kg are sometimes used if the iron load is severe.
Andy

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Offline Zaini

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Re: especialy to Andy question abt chelation
« Reply #243 on: April 27, 2010, 05:43:05 AM »
Waleed,

You friend is quite right,Ausnra or Exjade does take out iron from the organs first,thats the reason why ferritin readings get high initially,and this initial period can be prolonged depending on patient's ferritin level before starting Asunra,because the higher the ferritin is,it means there is more iron stored in the organs,and Asunra will take more time taking it out,but as Andy said,for those who have severe iron overload,Asunra is not the best choice.

Its been over an year my daughter is on Asunra,and i have learnt that you need to be patient if you want results from Asunra,her ferriti has gone down a little bit,but thats because she reached her highest dose only for a while and then we had to reduce it coz of her high SGPT,Now that this issue is resolved Alhumdulillah,i am hoping we'll see a decline very soon.

Its hard to say that the med is fake and corrupted,is it even possible?

Zaini.
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Offline maha

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Re: especialy to Andy question abt chelation
« Reply #244 on: April 27, 2010, 06:59:37 AM »
This is exactly whats been on my mind for quite sometime now. Are these generic brands as good as the original? Its 18 months since Hassan`s been on Asunra. His dose has mostly been around 25mg/kg. From dec to date he has been on a 30mg/kg dose. 0n oct 2008 his ferritin was 2666 and on march 2010 its been 2000. During these 18 months twice his fe has reached nearly 3000ng/ml, the second time was on jan 2010 and the lowest on record was 1750ng/ml. I have thought of giving splitting the dose a try before discontinuing with ASUNRA and switching to other methods.

All said and done I feel Hassan absorbs more iron from the gut. Most kids fe reach 300 after four or five transfusions but Hassan`s ferritin was 325 before his first tx. I do give him tea with meals, no vit c during meal times but still his fe is stubborn.

We have a topic in the chelation corner Exjade works... From that day on I have been inching to write Asunra works too but so far no luck. Lets see who gets to write this first.

maha

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Offline Andy Battaglia

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Re: especialy to Andy question abt chelation
« Reply #245 on: April 27, 2010, 02:42:19 PM »
I think a mistake people make with the Exjade (Deferasirox) drugs, and Asunra is not a generic, as it is manufactured by Novartis India, while Desirox is made by Cipla and could be considered a generic, is expecting to see immediate results in the ferritin. From the very beginning, with the Exjade trial period, we have seen the same phenomenon over and over. Annie, from Hong Kong, was one of the first people I knew who participated in an Exjade trial. During the first year, her ferritin doubled. Her doctor told her not to be alarmed and that it would indeed come down. During her second year on Exjade, her ferritin level plummeted, just as her doctor had told her it would. We have to remember a very important fact. The iron in serum ferritin is sequestered by the body in the ferritin protein, and it can do no harm while it is isolated in the ferritin. Ferritin levels also do not necessarily correlate with the true iron load found in the organs. Ferritin levels also change rapidly during any bacterial or viral infection, as the body moves iron into the ferritin, so the iron is not readily available to feed the bacteria or virus. This is a normal mechanism, but it often alarms patients and parents, who would otherwise not be aware of the changes, except for the frequent ferritin testing. We have seen over and over, that Exjade apparently works to get iron out of the organs first, and that its effect on ferritin levels comes later. This is probably why the combination of Exjade and  desferal is showing such good results. While Exjade is reducing tissue iron, desferal is mopping up the iron in the blood, that is found as ferritin and even free iron (the most dangerous iron).

I would highly recommend that no form of Deferasirox be stopped unless it has been used for a minimum of two years at a 30 mg/kg dose, unless the side effects are such that continuing the drug is not feasible. Patience is required, as is the recognition that maintenance doses will not lower the ferritin in iron loaded patients. As long as you know the source of your Deferasirox supply is legitimate and there is no possibility of it being a counterfeit drug, there is no reason to suspect the other forms of Deferasirox to be any less effective than Exjade itself. And those with very high ferritin levels should also consider a dose of up to 40 mg/kg daily. I would also suggest splitting the dose into two and taking it twice daily, if your results are slow to materialize, as further testing has shown that many patients are not getting 24 hour chelation from a once daily dose.
Andy

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Offline samyuktha

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Re: especialy to Andy question abt chelation
« Reply #246 on: April 27, 2010, 04:22:38 PM »
Dear Andy and Dear Friends,

Since 1 week, as per your suggestion,i have split Samyu's Asunra dose to 3 times.100mg in the morning,100mg in the afternoon,100mg in the evening.She seems to be doing well.Inbetween she complained me of stomach pain while passing urine.I was shaken out of my wits.I was worried about her LFT values and had doubt whether she is having pain and discomfort because of that.She was found to have urinary infection and was on antibiotic syrup "Taxim" for 1 week .She was back to normalcy.Her  LFT values  2 weeks back were;

serum creatinine= 0.8 mgs/dl

SGOT= 88.0 U/L

SGPT= 110.0 U/L.

After splitting the Asunra Dose ,i checked her SGPT and Creatinine in the early hours of the day as per Andy's advice.

Do you believe it friends,i was taken aback by the values.Her latest LFT values were;

serum creatinine= 0.6 mgs/dl

SGPT= 30.0 U/L .

I was more than surprised.If it was not for Andy and my dear friends in Thalpal, i would have remained as a timid mother.Thank you all friends.

Well regarding her Ferritin,i will check the values after a month and see what Asunra is doing in her.
But keeping in mind her previous records,Asunra has chelated Iron from her Body.

An year back her ferritin was 2950ng/ml.After 3 months when i rechecked it was 1330ng/ml.So the iron did decrease.

But after that it again increased till 2780ng/ml and after few months reduced to 2180ng/ml.

Now it has increased from 2180 ng/ml to 2940 ng/ml.I am keeping my fingers crossed if the values reduce in a couple of months to our relief.

Thank you once again dear friends.

Regards,

Viji :smiley
S.Vijayalakshmi

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Offline Andy Battaglia

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Re: especialy to Andy question abt chelation
« Reply #247 on: April 27, 2010, 04:25:34 PM »
 :biggrin

I think we will make this a standard practice to advise dose splitting. I imagine Novartis will eventually follow suit as they hear more reports of the success of this method of using Exjade.
Andy

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Offline Manal

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Re: especialy to Andy question abt chelation
« Reply #248 on: April 27, 2010, 10:24:32 PM »
Viji

Congratulations for the new results, I am really so happy for you, it seems that splitting the dose really works :wink Good luck

manal

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Offline maha

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Re: especialy to Andy question abt chelation
« Reply #249 on: April 28, 2010, 05:47:46 AM »
Hi viji
Very glad Samyu benifitted from dose splitting. :hugfriend

Little Aysam too had problems with his LFT. If only Mariam would sign in more regularly.

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Offline Rehman

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Re: especialy to Andy question abt chelation
« Reply #250 on: April 28, 2010, 04:19:08 PM »



Hi Dear Andy

You was advise me for  Thrombophob cream butt I cant found.

I found Lasonil 40g Ointment  Ingredient Heparinoid.

Im aslo sending you the web address pleas can you check

http://www.expresschemist.co.uk/product_2457_lasonil-40g.html




THALASSEMIA  MAJOR.

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Offline Rehman

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Re: especialy to Andy question abt chelation
« Reply #251 on: April 28, 2010, 04:26:14 PM »
Dear Andy

cane i use this
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Offline Lena

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Re: especialy to Andy question abt chelation
« Reply #252 on: April 28, 2010, 05:25:53 PM »
Lasonil is o.k. I have also used this but only after the pump. I hope we mean the same product, Rehman.

Lena.

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Offline Andy Battaglia

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Re: especialy to Andy question abt chelation
« Reply #253 on: April 28, 2010, 11:53:09 PM »
Rehman,

Lasonil is a similar product with the same active ingredient, Heparin, which is a blood thinner. Try it and see if it helps.
Andy

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Offline Rehman

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Re: especialy to Andy question abt chelation
« Reply #254 on: April 29, 2010, 04:34:45 PM »
thanks a lot  Lena and Andy for Reply
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