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Author Topic: Usage of Desferral along with Deferasirox (Exjade) Tablets  (Read 6664 times)
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Writing on behalf of my daughter


« on: July 20, 2008, 09:20:10 AM »

My daughter is  now 5 years and 8 months old. In last year September her Serum Ferritin level rose to 4700. After that on the advice of the Haematologist we have started giving her Desferral in the IV for sixty hours or so, along with after just after each blood transfusion using the channel made for transfusion.

This has shown excellent results. After three such sessions, over a period of 2 and 1/2 months her ferritin level got reduced to 2000. She has never taken Kelfer or Desferral in daily sub-cutaneous form.

Just one or two days back she has moved to Desirox (250 mg per day) - Cipla's version of Deferasirox, which is equivalent of Novartis' Exjade.

Now, my question is whether it would be prudent to give her Desferral (when she goes for transfusion for 8 hrs.). Normally, she was getting 2 vials of Desferral in 250 ml of Normal Saline along with the blood through a triway channel.

I have asked the Haematologist (Dr. Ashis Mukherjee) over here, he has said we may give her two vials along with the transfusion but it would not be required for the 48 hours of desferral in the post transfusion session.

I need to decide on this urgently and would be most grateful if you could advise me on this issue.
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I want to see a definitive cure of Thalassaemia in my lifetime. May God bless all of us.
Andy Battaglia
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« Reply #1 on: July 20, 2008, 09:51:02 AM »

Although there have been no studies on combination therapy using exjade and desferal, it is being used in combination by patients and also under the direction of Dr Vichinsky, who is one of the most knowledgeable thal specialists on earth. The patients I know who have used exjade and desferal together have had some good success with it and no side effects from the combination. I would suggest that you follow the hematologit's recommendation and see how it goes. If the ferritin increases, you may want to use more desferal. Please do give it some time, as it can take a few months to adjust to exjade and reach its maximum dosage. Has your daughter had any side effects from exjade such as the rash? Many patients have found that starting on a low dose and working up to the required dose minimizes side effects, as the body gets used to the new drug.
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Andy

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Writing on behalf of my daughter


« Reply #2 on: July 20, 2008, 10:07:24 AM »

She is 17 kg. So, the dosage turns out to be 15 ml per kg of body wieght (approx). This is lower than the usually recommended dose of 20 ml per kg of body weight. She has started taking it taken it for only 2 or 3 days. So, far there has not been any perceptable change or reaction. Let us see what happens after a few weeks. I will definitely get back to you for your advice.

Thanks very much for all your help over the years.

Warm Regards,

TK


Although there have been no studies on combination therapy using exjade and desferal, it is being used in combination by patients and also under the direction of Dr Vichinsky, who is one of the most knowledgeable thal specialists on earth. The patients I know who have used exjade and desferal together have had some good success with it and no side effects from the combination. I would suggest that you follow the hematologit's recommendation and see how it goes. If the ferritin increases, you may want to use more desferal. Please do give it some time, as it can take a few months to adjust to exjade and reach its maximum dosage. Has your daughter had any side effects from exjade such as the rash? Many patients have found that starting on a low dose and working up to the required dose minimizes side effects, as the body gets used to the new drug.
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I want to see a definitive cure of Thalassaemia in my lifetime. May God bless all of us.
Life is Beautiful ~
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« Reply #3 on: July 20, 2008, 10:21:33 AM »

Dear Andy,

The Doctor has also prescribed Vitamin E and Calcium. Are they be of any use?
Can they have any contraindication with Deferasirox?

Regards,

TK


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I want to see a definitive cure of Thalassaemia in my lifetime. May God bless all of us.
Andy Battaglia
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« Reply #4 on: July 20, 2008, 10:33:54 AM »

Vitamin E is essential for thalassemics, as the stresses of excess hemolysis and iron deplete the body of E. Please use a natural vitamin E product as synthetic E is of little use and in high doses can cause problems. Synthetic E will say dl-tocopherol, rather than d-tocopherols as found in the natural products. The best vitamin E preparations will be a complex of mixed tocopherols. Calcium is also very important for thals to maintain bone strength and development. Calcium should be taken with vitamin D to aid its absorption and magnesium, to keep the ratio in balance between calcium and magnesium. Magnesium also has benefits in maintaining the strength of the walls of red blood cells and also has been shown to help prevent gallstones, which many thals suffer from due to the breakdown of red cells and the excess amounts of bilirubin produced by this process. There are many products on the market that contain calcium, magnesium and vitamin D in the same product. This is recommended.
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Andy

All we are saying is give thals a chance.
Waleed
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« Reply #5 on: April 28, 2010, 01:56:56 PM »

Thread Revived ! 

I was on desferal/ferriprox combination therapy got reduced iron from 8000-2500 ng/ml in 2 months. I've now started exjade + desferal only because ferriprox is not available in riyadh while exjade is. I am on 24/7 pump-- 2vials spreaded over 8 hours and two 500mg a day each after 10 hours. Current bodyweight is around 50kg and ferritin around 2000, i will get exact result after 3 weeks.

i must say this! thanks to Saudi govt. that provides me complete medications totally free. Exjade 28 tablets 500mg is worth SAR 2,773  Shocked ... how many countries are there that provide such services for free? shall i make a new thread that details different countries' status on providing/costing medicines? or such discussion is banned?
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