Thalassemia Patients and Friends
Discussion Forums => Iron Chelation Corner => Topic started by: §ãJ¡Ð ساجد on June 04, 2008, 09:58:00 AM
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I was wondering if the dose of Exjade and Desferal are as effective as each other in terms of mg/kg.
For example I take about 54mg/kg Desferal for 5 days a week (yep shortage issues) and I want to either switch completely to Exjade or Combine it like 5 days Desferal and 2 days exjade. Then would I need to take the same dose? I'm asking this because JSF starts Exjade/Asunra @ 20mg/kg, so would I be slacking during my Exjade days @ 20mg/kg or is it as good as Desferal in high dose like mine?
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Sajid,
First of all, I am not aware of any combination therapy trials with regards to Desferal and Exjade. Are you sure its a good idea to start the combination therapy.
20mg/kg of exjade seems a little low for your age, my daughter who is only five takes 20mg/kg. It is best to start with a lower dose but eventually you might require upto 50mg/kg for seven days. However, I suggest talk to your doctor about the combination therapy.
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Hi C.F ,
i want to ask wat dosage will be for me .. as i m 21 years old and my weight is 45 kg ...
i have not started exjade yet but my doc want to start soon .... thats why i m asking about the dosage details for me .....
Take Care
Umair
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Umair,
I will see if I can get an answer for you.
sharmin
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Umair,
The eventual dosage for your body weight would be 1350 mg per day. The formula is 30 mg per kg body weight. However, when first starting, it is easier to avoid side effects if you start with a lower dose for 1-2 weeks. Perhaps 1000 mg daily. If you do switch to exjad soon, you might want to go as high as 1500 mg per day until your ferritin gets below 1000.
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Hi Andy ,
Thanx for the sparing time to reply from the busy life in conference and for the informative reply .... its helped me alot to understand about my dose of Exjade ....
If you do switch to exjad soon, you might want to go as high as 1500 mg per day until your ferritin gets below 1000
i think that's why my doctor want my ferritin below 1000 to start and maintain low dose of Exjade ....
1) could anybuddy gues that how much Iron we get with one unit of blood ??
2) could you tell how much iron exjade removes with one proper dose ??...
on my last transfusion ( date 27-09-08 ) my pre trasfusion Hg was 7.7 ( 77 ) , after the stomach pain and course of anti-biotics , i think my pre-Tx Hg will b very low this time again , i want few Txs in a short time thats why i m asking about , how much iron would i get with three transfusions in a week ?? .. ( if i can manage to get blood ,, hopefully, i will )....
and it will b safe to take Hg to that much low to take 11 Hg ?? ...
Best Regards
Take care
umair
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Umair
I am not sure about chelation but I have seen in the conference myself that the combination therapy is really working. So please do use Desferal and L1. Andy correct me if i am wrong, Desferal takes out iron from the liver and other organs and L1 is good on heart.
Shilpa is on combination and there is another person Lilianof Malaysia and they are keeping the iron well under control.
So Umair buck up and please donot take this lightly. I am going to be asking you again and again wether you are complying or not.
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Umair
I wil chk tomm with some doctors as to how much iron we can get with one pkt of blood. Lets see what they say.
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Hi Puja ,
Thanx for the info you posted .. its realy usefull ...
i m on combination therapy and you can see the results in my post
http://www.thalassemiapatientsandfriends.com/index.php?topic=1689.0;highlight=especialy+to+andy
i m still on combination therapy .. and complying on plan that my doctor gave me ..
i will reply you in details very soon this time i got a go ...
Take Care
Umair
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Hi Umair,
A doctor from Novartis,while giving us an introduction to Asunra,told us that a unit of blood (approx 300 ml) contains 250 mg of iron.
Zaini.
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Hi Umair,
I apologize for the late reply. With the economy turmoil in North America and the worry in financial markets, the real heat is on federal regulators, we have been working round the clock and busy in real time. Anyhow, Zaini is rigth, one unit of blood contains approx 250mg of iron. The average dose of desferal infusion for 6-8 hours removes approx 6-10mg of iron. The iron accumulation ofcourse depends on the frequency of blood transfusion and number of days of desferal infusions.
Exjade on a head to head trail with desferal shows as effective as desferal (if given in high doses of 40mg/kg) so an anology can be made that daily exjade dose will remove about the same iron as desferal.
Andy is right, start with a lower dose of 1350mg and climb to 1800mg with time.
Regards.
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Thank you Zain & C.F ,
do you have any idea about the efficiancy of Combination therapy and alone Ferriprox , how effecient these are .. are these more efficiant than the Exjade ... can you tell me about theese ??..
i want to know that after having a Tx how much Desferals , Exjade or Ferriprox i need ...
Thank you again for the replies ...
Best Regards
Take Care
Umair
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I apologize for the late reply. With the economy turmoil in North America and the worry in financial markets, the real heat is on federal regulators, we have been working round the clock and busy in real time. Anyhow, Zaini is rigth, one unit of blood contains approx 250mg of iron. The average dose of desferal infusion for 6-8 hours removes approx 6-10mg of iron.
Only 6-10 mg of iron ???
Umair,
I think ferriprox alone won't be enough unless your ferritin is really really low,Once when we were moving and i was in a bit hectic situation ,i was unable to do desferal and in my mind i was a bit satisfied that she is taking ferriprox,so it's not like she is not chelating at all,but in those days when her ferritin was tested it came back 2300 something,which definitely was a hit in my face and i immediately started desferal,that was the highest level she ever reached.One of our members Smurfette was on ferriprox alone but her ferritin was like 300 or something,so i guess combination therapy is best for you,at least for right now.
Zaini.
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Yeah Zaini ,
thinking the same .. 250 mg per Tx and then minus only 6- 10 mg per desferal therapy .. its mean i have to be on desferal on daily basis after a Tx , no rest between to Tx , if i use Desferal alone 25 times then it will remove the iiron equel to one Tx .. and i m unable to have 25 desferal therrapies in 15 day :grin ( between two transfussions ) ... combination therapy is the only choice ...
Once when we were moving and i was in a bit hectic situation ,i was unable to do desferal and in my mind i was a bit satisfied that she is taking ferriprox,so it's not like she is not chelating at all,but in those days when her ferritin was tested it came back 2300 something
for this i want mention here my exp ...
i m using ferriprox from Jan-2007 , when was a little above 13000 ... To jan-2007 to March-208 i used ferriprox alone ( a few desferal therpies in home ) my SF came to 9500.. then i added pump and desferal to my chelation process . and now my SF is below 3000 .. you can see the difference .. its mean desferal makes big difference ......
in Smurfette's case , i think she need's less Tx's or Iron is stored in somewhere else in er body ... as i heard that one of the forum member's SF were normal but when she had an SQUID test iron found in her heart, in a high Levels ...
Take Care
umair
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Smurfette reached her low ferritin level through hard work. Now that it is low, it is much easier to maintain. Her levels are for real and she keeps them low. I've been very proud of her effort.
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Andy thank you so much for the appraisal..
Umair, I have had a MRI T2 scan and guess what!!! YOUR WRONG ABOUT ME HAVING PROBLEMS WITH MY HEART AND LIVER....
I DONT HAVE ANY IRON STORED ANYWHERE IN MY BODY!!! MY T2 SCAN SHOWS I HAVE A HEALTHY AND NORMAL HEART NO PROBLEMS WHAT SO EVER AND JUST BECAUSE I HAVE HEP C DOESNT MEAN I HAVE I HIGH LIVER IRON... ITS ALL NORMAL ....
I AM ALITTLE ANNOYED NOW!!!
NOT HAPPY, MY TRANSFUSION REGIME IS FINE THE WAY IT IS... I DONT NEED ANY LESS OR ANY MORE BLOOD..
I WAS ON DEFERIPRONE BUT DUE TO NEUTROPENIA FROM IT, I HAD TO GO ON EXJADE NOW. I AM DOING FINE WITH IT..NO MAJOR SIDE EFFECTS EITHER...
PRIOR TO L1 AND EXJADE I WAS DOING DESFERAL FOR 30YRS NON STOP THANKS TO MY MOTHER!!!
SO NO ONE IN HERE CAN EVEN SUGGEST OR THINK THAT I HAVE HIGH IRON STORES IN MY BODY..
I AM ALITTLE DISSAPOINTED IN UMAIR IN EVEN THINKING LIKE THAT...
SORRY IF I OFFEND ANYONE BUT I AM UPSET NOW AND MAD
:mad
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Hi Smurfette,
Your mom has done a great job with your desferal, your iron levels are amazing! I am glad that the Exjade is working well, my son is doing well with it too (so far so good..). I wish you continued success with your chelation - you are a role model for other thals :thumbsup I didn't even know that a ferritin level of 300 was achievable for a regularly transfused thal until I read one of your posts a few years ago. I hope that I can do as amazing of a job as your mom has done.
I think Umair confused your case with someone else's, in which the ferritin levels and SQUID, T2* levels didn't correlate earlier this summer.
Smurfette, would you kindly share how many days a week and how many hours a night you used desferal while you were growing up? Many people can learn from you as keeping the heart and liver healthy is the key in thalassemia.
Thanks :hugfriend
Sharmin
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Sharmin :hugfriend
Thank you!!!!
I used to wear my pump for 7 nights a week when I was younger, and when my ferritin down, we reduced the the days to 5 days a week non stop, I even used to wear my pump out too..
Having a ferritin of 300 is good and even lower is better.. I did get it down to 152 at one time :biggrin
To be frank with you, I have never had any heart problems in my life regarding thal!! As I said before my liver iron is good apart from having Hep C.
I am sure that you will do a great job in doing what ever you can for your son... See my mum was determined to give me a normal life as possible..
With determination and faith you can do anything and achieve anything...
Just dont give up or say i cant do this...
Take care
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Smurfette,
Thank you for the inspiration and encouragement and the opportunity to learn from you. After meeting people like you I do believe that anything is possible :hugfriend :hugfriend
Wishing you the best of everything, always,
Sharmin
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oh Smurfette ,
i wasn't talking about your hear ... i mean to say that ....
in Smurfette's case , i think she need's less Tx's or Iron is stored in somewhere else in er body ...
only this was for you ,,, and i want to mention that , we can't expect that only ferriprox will bring SF down .. we need to have desferal as well to take SF to normal levels ....
then if i m not forgetting then i think i red it somewhere about someone else ( not you )
as i heard that one of the forum member's SF were normal but when she had an SQUID test iron found in her heart, in a high Levels
if anything offend's you then please ignore that i mean't anything like that , you are talking about ..
Take Care
Umair
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Hi smurfette ,
How r u doing ???.... i just read your full post ( first one in which you are a little rude ) ..
.. hahahhaa. sorry i didn't say that in my first post bcoze i hadn't read your full post before replying first time ... i just red first 8 lines of your post and then sent first post in reply ...
you are looking rude... i feel that its realy funy hhahahaa ... wow ...
SORRY IF I OFFEND ANYONE BUT I AM UPSET NOW AND MAD
ther is nothing that offend anyone and for me , nobody can offend me ...
hey if you read your post with emotional rude effect you will have fun .. i realy enjoyed it ...
NOT HAPPY, MY TRANSFUSION REGIME IS FINE THE WAY IT IS... I DONT NEED ANY LESS OR ANY MORE BLOOD..
i dont think that i said your Tx regime isn't working fine ... well leave it all ...
it is too long since i have faced something new .. soo its a good change for me .. you make y face smiiley after a long time .. thanx smurfette ... happening something new give's the intiative that we are alive ...
soo wats up ???? .. are you doing well na ?? :thumbsup ...
Take Care
Umair
Hehehehhehee who is A little naughty an quick and react's realy fast ... Dont mind ...
:happydance :rotfl :happydance :rotfl :happydance :rotfl :happydance :rotfl :happydance
Edited : hey you said to me in a chat session on this siite that , Nobody can Offend you .. i did it , hurray i make the impossible to possible ....
:happydance :rotfl :happydance :rotfl :happydance :rotfl :happydance :rotfl :happydance
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Andy,
During the trip my son's dose was increased from 500mg to 625mg.
And Umair, just like Andy said, we were also told that the adequate dose of exjade is 30mg per kg of body weight, so my son is now receiving that dose because he seems to have tolerated the lower dose well.
Sharmin
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hi Sharmin ,
i will keep it remember when i will start Exjade . its realy usefull info for me ...
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I started off with Exjade with the dose of 20mg/kg.1000mg/day was what I would take. But, I'm off it now due to low ferritin levels.
\peace/
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That is awesome Sahil! I am hoping that with the new dose of Exjade my son's ferritin levels will be low enough to get him off of desferal soon.
I hope that your ferritin levels stay low - way to go :thumbsup
Sharmin
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bad news for me
I had my ferritin checked and it came out 9000 :s. last time (about 8 months ago) it was 7500. I am on combined therapy. I take 12 vials of desferals a week and 4 capsules of Kelfer daily. Oh and i have 2 pints of blood every 14-18 days. one thing that i am noticing for 2 years now that my urine usually doesn't change colour when i take chelators, does this mean chelators have stopped been effective on me? or does i need to increase my dose of desferal? someone plz guide me through this.
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Dear Tariq,
I am sorry to hear that your ferritin levels are going up. This should not be happening with combination chelation therapy. Chelation therapy is usually determined based on your body weight and transfusion volume (cc of blood per kg of body weight). I am more familiar with Exjade doses than Kelfer. How many days a week and how many hours a day are you using desferal? I don't think that chelators have lost their effectiveness on you. Do you take vitamin C 1/2 hour after beginning desferal treatment? You will notice the color of urine to be more red the next day if you take vitamin C with chelation.
Because you are transfusing quite frequently, your chelation dosages may have to be adjusted accordingly. If your ferritin levels are in fact an indicator of your actual iron levels then you may need more aggressive chelation therapy - chelating for longer durations is best - 7 days a week 12 hours a day - until the ferritin levels decrease. Of course your physician needs to determine this for sure. This is the advice we received when my son's iron levels were 2880 - and following this advice we were able to bring it down to 1320 within 6 weeks.
Most importantly, as ferritin levels over time may be a good indicator of liver iron concentration - they are not a perfect correlation and can be misleading. Therefore, if you have access to SQUID or ferriscan you will have a better idea of your liver iron. If your liver iron levels are high then you should be on an aggressive treatment plan - and then re-evaluated every six months until your liver iron levels are within an acceptable range. You should also consider having a T2* done to see if there is iron in your heart and if it has any effect on your heart function. Don't worry, because chelation can reverse this effect.
Please begin getting answers and chelating aggressively immediately, the free iron in your body is not good for your organs. You should also be on antioxidants such as IP6 to offer some protection against free iron, also never go more than 24 - 48 hours between desferal as desferal will bind some of the iron and protect you from organ damage.
You can also see the list of supplements which Andy has listed such as vitamin E to protect against oxidative stress. With the increased chelation you will also need zinc and calcium/magnesium.
Also note that if your iron levels are above 2000 any fever in the body needs to be treated as high iron levels can lead to infection. This point was stressed to us while we were in Oakland.
Best of luck getting those ferritin levels down Tariq,
Sharmin
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Sharmin,
thanks for your quick response.
I take desferal in 8 hour infusions with 3 vials at a time. and no i am not taking vitamin c for sometime now because i can't find any good brand of vitamin c tablets here and i dont trust the one that are available. i think i will look for imported brands or may be Zaini can guide me what tablet is she giving to her daugher. Regarding Vitamin E, as soon as i heard from Andy from his Singapore feedback, i have order the tablets and will start using them from this week.
Regarding SQUID and T2, i will discuss with my physician about them and lets see if i have access to these tests.
One more thing, i was thinking that since havent had my spleen taken out yet, is this the right time to have spleenectomy to reduce my transfusions and hence slow down the accelerating ferritin levels?
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Tariq,
In thal major it is not always beneficial to remove your spleen. Is your spleen enlarged? It is important to determine why your tx requirement is high. If you are having hemolysis due to antibodies etc. then there are other lines of treatment that should be considered first.
I think that the most important thing to do is to increase your chelation, it is a good thing that you are on L1 that will help to protect your heart. Maybe Andy can guide you regarding the L1 dose. I do think that it is a good idea for your doctor to increase the duration of your desferal infusions - because the duration is even more important than the actual dosage. In some cases here patients are admitted and given 24 hour IV desferal if their levels are too high. In your case I think that you should be on at least 12 hour infusions 7 days a week for a while because the chelating agents have two tasks to manage in your body: 1) Remove the stored iron from your body 2) Deal with the somewhat large/frequent iron coming into your body with your transfusions.
Perhaps once the iron stores in your body have decreased, less chelation will be required to deal with iron coming 'in' form the transfusions.
At the same time, try to find out why you are needing more blood - are you having increased hemolysis? could the blood be better matched? do you have allo or autoantibodies? You should ask your doctor these questions and your doctor should speak with the blood bank. Receiving fresh, well matched blood should make a difference. In the case that you have antibodies, first you need a good cross match, then your doctor can try prednisone - if that does not make a difference then IVIG or rituximab can be considered (but this only applies if you have antibodies). All of this should be considered before discussing the removal of your spleen.
Sharmin
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Tariq,
Your dosage of both desferal and L1 are too low. You should be getting at least 20 gm desferal in one week and your time is too low also. One thing that was verified for me at this conference is that it is better to spread that same amount of desferal over more hours because even though you take the same amount, by taking it for a longer period of time each time, it increases its effectiveness. Desferal only chelates iron while you are using it, so 8 hours is far too short. Minimum right now should be 12 hours/day, 5 days a week. Even better is if there are some days in which you can pump for 18-20 hours, because you are going to need to work hard to get your ferritin down. Believe me, if you get serious and work hard, you will reverse this high number. If you don't, well...we all know the answer to that. By the way, the reason I say this information was verified is because Shilpa has used this method for a long time with good results. She routinely takes desferal for 18-20 hours at a time, along with low dose L1. Anyone who saw her at Singapore will agree that she looks in very good health.
Also, why is your L1 dose so low? Do you have any problem with joint pain or low white cells?
Tariq, you need to work hard and we are here to give support. Let's work together to bring you out of this dangerous situation. We have seen what Umair has done and you can do this too.
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one more thing to add, i continuously have that feeling that chelators are not being effective on me (as indicated by urine colour). most of the time i dont get any colour at all even after 3 vials infusion and kelfer dose, why is that?
Is their anything like body resisting against chelators? if kelfer is not working, should i shift to Asunra or something?
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Tariq,
Take vitamin C (100-250 mg) during the first hour when you start your desferal. If you can't find C, eat some C rich food like oranges or orange juice as a substitute. Even if you don't increase the amount of desferal you take, by taking it for more hours, you will chelate more iron with the same dose. Desferal should darken the urine, so see if there is any difference when you take it for a longer period. Not all of the L1 is seen in urine so that may not be a good measure. Also, take L1 every 6 hours for most effectiveness. So, if you take four tabs daily, take one every 6 hours. If that isn't possible, take it at least 3 times daily. The dosage should be 75mg/perkg body weight daily. Your dose might be a bit low.
Desferal is probably the safest of the three chelation drugs. Your doctor needs to learn more about this subject. It is well accepted by most top thal doctors that combination therapy using desferal and L1 is the most effective chelation, and depriving patients of desferal is a mistake.
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Tariq,
Plz take care brother,start immediately with aggressive chelation,combination therapy is the BEST,so there might be something wrong with your dosage,calculate your dosage according to what Andy told you,try taking desferal at least 5 days a week and for once don't listen to your doctor,Take ABOCAL (half tab) after starting desferal,it contains,Vitamin C,Vitamin D along with calcium.
Start immediately and fiercely,we are here to support you and cheer you up.
Zaini.
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Tariq,
Like Andy said, desferal is the safest and best documented drug of the three chelators - it has been used for 40 years now.
Increasing the duration of your desferal is absolutely key. Maybe your desferal is not on long enough for there to be significant iron removal in the urine. Desferal needs to be in the body for at least 8 - 10 hours before it removes iron. When my son was on his lowest dose of desferal it was 10hrs/day 3 times a week. If you have your desferal on for 10 - 12 hours (taking vitamin C in the first 1/2 hour) - you will definitely see red in the urine.
Best of luck,
Sharmin
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Thank you Andy, Zaini and Sharmin,
Your words mean a lot to me. I sure will follow your guidelines. Here is what i will do immediately.
Starting Vitamin E 600 I.U daily
Desferal 12 hours 4 vials 5 days a week
Kelfer 4*500 mg daily
Vitamin C 100mg 1/2 hour after starting desferal infusion
Then I will consult doctors here regarding ferriscan and SQUID, lets c if i can had it done, to get the better idea.
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Your welcome Tariq,
Perhaps it would be best to do T2* and one of either the SQUID or Ferriscan.
We are all here to help you get your iron levels down - lets get this started immediately - the more hours you have the desferal on the better results you will see. I think that you will see a significant change within a few months if you get aggressive with the desferal :catfight
Sharmin
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Tariq,
Unfortunately,Ferriscan or SQUID are not available in Pakistan,if you can manage to travel abroad,then it might be an option for you,you can go to India for Ferriscan.
Zaini.
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Dear Tariq,
Yes, ferritin isn't always a reliable measure - however consistently and over time it is an indicator of what your LIC most likely is. Because you are consistently getting values of 8500 - 9000 - chances are that your LIC is also quite high at this time. Another indicator is that based on your transfusion volumes - your chelation dosages are much too low. If you don't use desferal for at least 10-12 hours a night it will not benefit you.
It can be very difficult when your doctor is telling you one thing but your own research is telling you another. However, even with the best of intentions your doctor can be very wrong in this case. Andy has met with the best doctors on earth - and the advise he gives you will be much more accurate. Andy has connected me to the most prominent thalassemia center and doctor on earth - and the advise I am giving you is based on his research and experience.
Managing thalassemia is a balancing act - balancing the risks and benefits of various treatments. We need to balance transfusions for optimal health by weighing the benefits of good hg vs maintaining the lowest possible iron. We need to weigh chelation the risks of iron overload vs. the side effects of the chelating agents. etc etc.
In the case of iron overload - the damaging effects of iron are much worse than the side effects of drugs such as desferal. Once your iron levels are down - then the side effects of excessive desferal will outweigh the effects of the lower iron levels in your body - thus the chelating drugs will be reduced. At this time the risk from iron overload far far outweighs the side effects of desferal or other chelating drugs. This is my view of thalassemia - I know you will get many great opinions:)
Sharmin
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Hi Tariq ,
Sorry for being late to reply buddy ,
Minimum right now should be 12 hours/day, 5 days a week. Even better is if there are some days in which you can pump for 18-20 hours, because you are going to need to work hard to get your ferritin down
absolutely right ... here i want to say that i found that you are taking less dose than your requirements ... i m 21 years old 43kg is my wiehgt ,my desferal has been reduced but i m still on old one doses , my doctor ( Dr.joveria manan ) prescripted me for the first time ,
desferal 3 vials 15 -20 hours
Ferriprox 9 tablets a day ...
vitamin E 1 tablet
zincat syrup 1 half tablespoon
De-Calc ( vit-d) 6 tabs a day
you are elder than me and hope that your weight will b also a bit more than me ... soo to this point of view you are taking extremely less doses than your requirements ..
ask your doctor to consult to my doctor , i gues your doctor is practicing ( on training freshly graduated ) soo she need help of a highly well known doctor ... pllease PM me or meet me on msn i will give you contact details of dr joveria manan may b she could help your doctor to stop making wrong decissions ... secondly i want to say that reason of colour-less urine should be low dose as well .. when-ever i tried a low dose it results the same you mentioned ...
Zaini is right SQUID & Ferriscan is not available in our Country .....
i think we had talked about the duration as well , when i told you that i m on desferal therapy and i use to take 3 vials of desferals in 20-23 hours .... well buddy i think you need to have a look again on your plan , and make some changes ... go to Aga Khan Hospital bcoze that is the best place for thals not for only people living in karachi but the whole country... i know that several time Aga Khan labs collection center told me that they will send my sample to aga khan karachi for this test .... so please do care of your self buddy ... and have a visit of Aga Khan Hospital ....
if i missed something to answer so please let meknow i will try to answer ....
Best Regards
Take Care
Peace
Umair
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It took me 3 years to get my S.Ferrtin down from 9200 ng/ml to 317 ng/ml. With 279 ng/ml being my lowest. I was on optimum chelation and very regular with it. 3 vials of desferal 5 times a week and 6 capsules of kelfer a day.
Tariq once your S.Ferritin comes to 6000 ng/ml, you can start with Exjade. Many in my hospital who started off with Exjade have reduced their S.Ferritin levels upto 2000 ng/ml in one month.
Don't worry buddy, everything will be fine. You're a tough guy man!!
\peace/
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@Umair
Thanks buddy for your suggestions
@Sahil
Don't worry buddy, everything will be fine. You're a tough guy man!!
Well you are right about that. and BTW tough guyz don't worry for anything, they just face it....
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Well you are right about that. and BTW tough guyz don't worry for anything, they just face it....
Exactly man!! Thats the spirit! And I appreciate it!!
\peace/
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Everyone
I do have one question, what is the recommended water for dissolving desferal, distilled water or Sodium Chloride water. can it change the effectiveness of desferal infusion?
bcoz i currently am using Sodium Chloride water 0.9% solution as recommended by our thal center here.
waiting for responses...
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Tariq,
Depends how many deferals you use and what syringe you use. I would use 3 vials and 9.5 ml of distilled water in a 10ml syringe. 10-12 hours was my duration.
\peace/
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1) could anybuddy gues that how much Iron we get with one unit of blood ??
umair
An average unit of blood contains about 250ml of packed red cells ie 250 x 1.16 or 290 mg of iron. For example, a patient weighing 40 kg receiving 3 units a month will receive 3 x 12 x 290 = 10440mg/year = 28 mg/day of iron a day through blood transfusions.
Each molecule of DFO (Desferal) binds one atom of iron, forming a very stable complex. Theoretically, 1g of DFO can bind almost 93mg of iron. In reality, only 10% of the drug binds iron before excretion.
Taken from http://medicine.nus.edu.sg/paed/academic/HO_iron_chelation.htm
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Depends how many deferals you use and what syringe you use. I would use 3 vials and 9.5 ml of distilled water in a 10ml syringe.
Actually thats what not i wanted to know. let me repeat the question
"what is the recommended water for dissolving desferal, distilled water or Sodium Chloride water. can it change the effectiveness of desferal infusion?"
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Tariq,
Am sorry for getting your question wrong. Well, I've always used distilled water. So, I don't know about sodium chloride.
\peace/
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It seems to be a matter of choice. It makes no difference in the effectiveness of desferal. I know people use both. Some instructions specify saline but Northern California Comprehensive Thalassemia Center says
From http://www.thalassemia.com/desferal_toxicity.html
Using more normal saline or sterile water to mix the Desferal makes it much less irritating.
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Also, if you are taking 2 gm desferal subcutaneously, use 20 ml water (5 ml per 500 mg), or more water if you intend to dilute it so it lasts more than 12 hours. You may not find this in the prescribing information, but the doctors at the conference stated that it is actually more effective to spread the same dosage out over a longer period of time. This method has long been used by Shilpa to make her desferal last longer. When I heard the doctors recommend this at Singapore, I wrote this in my notes. Shilpa is a genius! It has worked well for her.
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Thanks Andy, i was eagerly waiting for your opinion on this one
It seems to be a matter of choice. It makes no difference in the effectiveness of desferal.
phew thats a relief.
Actually yes, saline does cause less irritation, and the reason i shifted from distilled water to saline about 2 years ago was that distilled water was given me pain and irritation.
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Hi Tariq ,
i forgot to mention one thing , when i asked to my doctor that may i use 9.5 ml water for 3 vials or 12 ml for 3 vial of desferal .. she told me that it would be good to use 15 ml for 3 ( 5ml per desferal vial ) . she told me that this will make the solution light and there will be less chances of swelling over the site of desferal and it will be easy to mix in your boddy ... reducing the water could make the solution hard and it could create swelling and pain ..... i hope it will help you ...
Take Care
Umair
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Everyone, do not assume your liver is healthy just because your ferritin levels are low. Iron overload in organs does not necessarily reflect in ferritin tests, as Kats found out this year. She has always had top notch care and low ferritin but it was discovered through a heart scan that she was suffering from iron overload. As a result, she was taken off Exjade and put on combination treatment using desferal and L1.
Hi Smurfette ,
i was talking about this one member ... i mixed up you and Kat togather ....