Thalassemia Patients and Friends
Discussion Forums => Iron Chelation Corner => Topic started by: §ãJ¡Ð ساجد on January 30, 2008, 08:56:11 AM
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Hi Everyone,
I was with the J.S.F Project Manager yesterday who told me about the upcoming generic Exjade for developing countries.
He said that they are ready to place a large stock order BUT the management have concerns making a big investment due to unreliability of (get ready for a shocker) "The original Exjade" so will it be worth it to invest in a cheaper (about 10 times) version that no one has tried yet!!
I denied their concerns and told him about it's success in the Exjade users on our site. He then showed me the regularly monitored blood tests including S.F results of the two patients who were on the "Original Exjade" bought from either Europe or U.S; which showed that one of them had a slight increase in S.F while the other's S.F hovered during the span of 10-12 months.
Now these patients are very well maintained and were very compliant with Desferal. But ever since they switched to Exjade, they are not very satisfied with it (After all it costs them a fortune) and it barely maintains the S.F levels with an increase trend after 10-12 months.
He offered me to try (I wonder what they are thinking :biggrin) Asurna and see if it does any better than the real thing before placing a large order and I said, "Hmmm...now that you put it in that way, I'll think about it."
I want you guys, my extended family to tell me what to do before signing up. However, life without the daily needles looks soooo worth it even with the 10X cheaper cost, but I need it to get my 9000 S.F down and not hover with a slight increase at the end of an year.
Let's see what happens. I sure hope they get it and it works too... :-\
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Hi All,
In fact I wanted to post this question of Exjade launch in India. Being new on the site to day could not figure out how to post a querry.
While, my daughter milan had BT on this Monday at Chandigarh(North India), I got the good news that Exjade is being scheduled to be launched In Mumbai (India) this March 2008 by Dr M.B.Aggarwal at Bombay Hospital. It will be in the doses of 100 and 400. Details are awaited, shall appreciate if some more light is put on this from folks from Mumbai on enquiry with Dr. MBA.
Best regards.
Amrit Sembhi
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Hi Amrit Sembhi and welcome to the site, i am sure you will gain alot if information here.
Sajid, i think you should work on lowering your ferritin first before trying anything new. I know that this will involes all the needles hassels,but please be in safe side first. Second option, you can combine the new brand with desferal instead of L1 as i know it isn't suitable for you right now.
Anyway, please do not stop the desferal for anything until we are in the safe side. Good luck, you can do it and keep it ''down'' :hugfriend
Manal
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Sajid,
This looks like a business decision by Novartis (if the news is true). Given the current cost of "Original" exjade it is possible that Novartis is planning a generic version because obviously not many people can afford it and they have to make money out of their investment.
How effective is this generic version?
Is it really been approved for trials?
What study is done prior to launch?
Sajid, don't go blindly on that, contact Novartis directly and whoever you deem see fit to contact. It is quiet possible Novartis is trying to get some people to try it for them before full launch, but they have to follow all the protocols of a trial. Obviously the easy target is the developing nations where rules are not strict and easier to find people who don't ask too many questions.
Your SF is really high and only you can decide if you want to try the new drug. Frankly, I wouldn't under the circumstances. I would first get my SF down to a level where it is safe to try anything new (just to play safe and after striking out the "what if" scenarios).
Let us know your decision and we will be with you always.
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Sajid,
I have heard from many Thal pateients that with Exjade, the ferritin first go up before it comes down. You already have very high Ferritin so, I will suggest use the standard protocol for lowering high ferritin - which is 24 hours desfereal for many days (as instructed by your doctor) plus L1. I hope you can use L1 pretty soon because at that high Ferritin, there is a real danger to your heart and L1 can effectively remove iron from the heart. Please work diligently to reduce your iron levels. I worry for your health.
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Hi Sajid
I think as other members said you should be concentrating in lowering you ferritin count as you number are quite high you should not take any risk in trying some thing new. We all know that Exjade is helpful in some cases but "How Generic Exjade effect on SF" we don’t know.
Take Care & Best Wishes.
Dimple
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Hi everyone!
Thanks a lot for your valuable opinions. It really has made me feel special :grouphug
I will get more info about it from them in a few days and share it with you.
Meanwhile can the current Exjade users tell me how Exjade is doing with them and what dose in mg/kg they are taking which had made their S.F gone down?
I think the patients I mentioned are taking it too low; they are at the initial 20mg/kg dose.
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Hi Sajid
My, My, I must say this is a nice chocolate cake!!!!!!!!!! you are the best pastry cook.
I'm droolling :biggrin :biggrin :biggrin.
I can eat all my virtual cakes no calories :rotfl :rotfl :rotfl :rotfl :rotfl
nice one ,
Kathy
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Thanks Kathy!
:biggrin I wish I could just reach out and grab them like in the movie "Charlie and the Chocolate Factory"
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Hi Sajid,
I must tell you that my SF readings were at normal ranges for Thals in my country (1700-1900) and I was totally shocked to get the results of my T2* reading when I finally got it checked (wasn't available in my country).
I had to move countries but I was put on the combination therapy (L1 and desferal) which has worked towards getting my levels down both in my liver and heart (both were overloaded).
I must say that I am grateful for this and I will NOT think of changing this program for anything especially since there is no solid proof that ay other chelator can touch the iron in the heart.
I know that you will do what is best for you but make sure and do proper research as we need you around as well. :grin
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Hi,
Thanks for your advice. Today I went to meet our project manager about the dose of Exjade for the above mentioned patients but he was too busy. I waited till my blood was ready for my transfusion. Oh well :dunno Maybe some other day. I'm not keen on starting Asurna myself too after reading all the messages above :grin
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Sajid,
When a patient switches to exjade the starting dose is not normally the maximum dose. It take some time to adjust to the new drug before the dose can be raised high enough to make an impact on lowering ferritin. It has been shown that the dosage of exjade needed to lower ferritin is 30-40 mg per kg of body weight. The starting dose is usually no more than 20 mg/kg. If your ferritin is already high you can expect it to jump initially when starting exjade. Because of this, it is preferable to get your ferritin lower with aggressive desferal therapy before beginning on exjade. It is very important to be taking desferal for 6-7 nights per week right now. IV desferal during transfusions can also be considered as a supplement to your subq desferal. I would also suggest that if you can get your white cells high enough, to ask the doctor if you can start on a low daily dose of L1, so that you can be using combination therapy. As you get older, iron overload in the heart must be taken into account and dealt with. Even a low dose of L1 will have some positive effect on your heart. If at all possible, this should be considered.
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Andy,
Today we started the exjade for my dayghter, its 250mg in 1/3 glass of apple juice 7 days a week. Reading your post I quickly did the calculation and it looks like approx 20mg/kg. She is 15 kg and needs 300mg as starting dose but the tablets come in 250, 500 and 1000 mg dosage.
We are advised to give her prunes and high fibre food to regulate her bowl movement. We hope exjade will eliminate toxicity problems in her due to desferal. We have been advised to watch for rashes and stomach problems common for exjade starters.
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I would suggest starting with the 250 mg tab daily and see how well she tolerates it. I don't know if you should add much more fiber at first as one complaint many thals had on starting exjade was that it made them very loose as far as bowel movements. This seemed to be a temporary condition for most who experienced it. This is a question where the experience of other users will be very helpful.
Should exjade users add more fiber to their diets?
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Hi canadian family,
Good luck to your daughter...Hope she does well on this chelator. Since my daughter will start exjade pretty soon, please keep us posted how well your daughter is doing on exjade. Also, is she drinking the juice within 10 minutes? and please make sure to use only plastic spoon to stir the juice after adding exjade to it. I am really worried, if my daughter will refuse to drink the juice. anyway, i do not want to worry about it from now. i want to learn from parents like you to know what worked and what didnot.
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Hello,
Day 3
She is okay taking the juice first thing in the morning but we are finding it very hard to convince her to drink extra water.
She is having anxiety attack since last night, she could not sleep and was crying all day. (Exjade can cause anxiety as a side effect).
No rash so far.
She did complaint about stomach problem briefly on the first day.
We are keeping an eye on her.
Thanks
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The anxiety is getting worse but we are advised to cope for it for few more days. The major reason for anxiety is not sufficient water intake. As far the high fibre diet recommendation is concerned, we are told it is due to chronic constipation problem in my daughter. The major source of iron excretion while taking exjade is through bowl movements and one should be regular as we are told.
Will keep you guys updated.
Thanks
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Wishing you lots of luck with Exjade!
Lots of hugs and kisses for your daughter, she is in my prayers.I hope one day Exjade would be available to my daughter too.
ZAINI.
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The anxiety is getting worse but we are advised to cope for it for few more days. The major reason for anxiety is not sufficient water intake. As far the high fibre diet recommendation is concerned, we are told it is due to chronic constipation problem in my daughter. The major source of iron excretion while taking exjade is through bowl movements and one should be regular as we are told.
Will keep you guys updated.
Thanks
Hello Canadian_Family,
Can you try giving her liquids she likes. Like Vitamin Water (which are colored). That way she drinks the water and she would NOT hate it either. Not sure if Pedialyte would work or any other electrolyte, which makes their interest in drinking the water. Just an idea, but you should make sure with doctor's before you try
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Thanks for your advice Narendra. We will certainly look into liquids that are free of sugar, sodium and artificial flavors.
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Narendra,
Thats a good advice but I think pedialyte should not be taken if there is no diarreha (spelling?) as it will unnecesarily burden the kidney with all the minerals added to the pedialyte.
Canadian family,
Does she like stickers or stars or somethign similar...May be she will get two 2 stars, if she finishes the drink within 10 minutes or, may be she gets to choose the next movie to watch if she finishes the drink...will these work? My days are coming near to be in the same situation...so, wishing you all luck and please, please keep sharing what methods are working and which ones are not. Best of luck...
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Dear All,
My son parin is on Asunra from may 2008 more than a year and now he is 3.5 years. one of the observation we found about the diet that it decreases. This might or might not be due a Asunra but just asking if any one come accross this situation.
Thanks a lot
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Hi Parin,
Because Exjade (Asunra) can cause some nausea, this is not uncommon. Some people find better results by taking it later in the day. Again, it should be taken on an empty stomach.
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I am looking for exjade 500mg in India. Im from the philippines. I heard it's cheaper in India. I need to purchase as soon as possible. please email me senses_salon@yahoo.com.