Thalassemia Patients and Friends
Discussion Forums => The Spotlight => Topic started by: shaziya on January 22, 2011, 04:11:50 PM
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hi everyone....i am a thal major in Sri Lanka. I have been following this site regularly. i am on monthly transfuions. i need ur advice. my ferritin is really high. i am on asunra.i am allergic to desferal. asunra is not showing much response. i would like to know if it is possibl to combine asunra and deferiprone? i would appreciate ur advice.
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Hi Shaziya,
What is your ferritin level? What is your weight and what dose of Asunra are you taking and for how long have you been taking it?
A couple members have tried the combination of Exjade and deferiprone, but there have been only limited trials. I would like to see your answers before advising.
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hi Andy. thank you for ur reply... i am 27 years old. my weight is 40kg. and my ferritin as per november is 5186. i hav done another ferritin yesterday, am waiting for the report. i hav been taking asunra for the past 2.5 years. i am taking 1500mg of asunra at present. i would like 2 share some of my history with u. i was on desferal and deferipron for a very long time. suddenly i developd an allergy to desferal 5 years ago. then i was only on deferiprone. but it was not res pondin. so my dr adviced me to take asunra wen it was released in sri lanka. but still my ferritin is not reducin. ya and it is not increasing too, that is the only bright side to it. last month we tried to take desferal in pump again under the cover of steroids. after a few times again i developed an allergy. so that is y i thought i will ask u all ur views on combinig asunra with deferiprone. or is there any other option that i can try. i would really appreciate ur advice....
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Shaziya,
Have you ever tried IV desferal? If you don't have the same allergic reaction, it might help to try it that way, along with Asunra.
If this isn't possible, talk to your doctor about trying combination of Asunra and deferiprone, keeping the Asunra dose the same and taking it in the morning, and then taking one dose of deferiprone late in the day. Close monitoring of your liver and kidney levels will be needed for this to be safe. I would take it cautiously. Has your ferritin been higher than this in the past?
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yes. we tried in I.V as well. But i got the same reaction. yes my ferritin has always been high. my ferritin was at 10000 in 2004. then we got really scared and took desferal everyday and brought it down to 4000 odd. then i dont know y but i became allergic to desferal. since then we hav tried several times on and off. but to no avail.... for the kidney and liver levels i hav to do SGPT,SGOT, and creatinine right? are there any other reports that i should do?
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If you take deferiprone, you have to have your white cells checked regularly too.
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ok. tks. how do i check my white cells?
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hav the others who hav tried this combination of asunra and deferipron been able to reduce their ferritin? hav they had any problems with this combination? has anybody out there been succesful? i just dont know wut to do?
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Your doctor can arrange all the tests. White cells always have to be regularly monitored when taking deferiprone.
See what your latest ferritin reading is before making any changes. Your current dose of Asunra should be enough to lower your ferritin. For how long have you been taking that dose?
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hi Andy.
i have been on this dose for the last 7 months. bfor that i was on 1400mg.
yes as you said i will see what my latest ferritin is and speak to my dr and then take some action.
thanks for ur advice. i will let u know what happens........
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OK. At your weight, you can go as high as 40 mg/kg or 1600 mg daily. This dose is used when ferritin is being stubborn and a more aggressive approach is needed. Hopefully, your current dose will soon show some positive trend.
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hi Andy.
hope u r fine. i got my report. my ferritin has reduced by 500. i dont know if it is due to the few doses of desferal that i was able to take last month bfor my allergy or if it is due to asunra.
i met my dr. and we decided to increase the dosage of asunra to 1600 n see. thank u so much for ur advice. hope it reduces with this dosage. hope and pray for the best...
thank u.
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Shaziya,
I think the Asunra is probably finally showing some progress in your ferritin level. This is good and I expect you will now see continued lowered ferritin. When the iron load is high, progress will be seen removing iron from the organs before it's seen in lower ferritin levels, so once you see the ferritin dropping, it usually means your organs have a much lower iron load.
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i hope and pray that it is so. bcoz i badly want to reduce my ferritin. i am so worried. i wonder where all this excess iron must be?
thank u once again.......
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Hello Shaziya,
The ferritin level usually goes up when you start the asunra. The reason is the chelated iron from the organs goes into the blood stream which ultimately shows higher ferritin levels. With time your ferritn goes down to normal levels as organs have less iron to be chelated. That may be one reason your ferritin went up when you started the asunra. Glad to hear your ferritin is going down now. Keep up the 1600mg dose and you should see some good results. Even if there is a slight increase in ferritin for time being don't get scared, it will eventually come down.
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hi Canadian Family.
thank u. it is indeed reassuring to hear that the iron must be going down from the organs. i only hope that is what is happening.
i never took thal seriously. bcoz i never knew how dangerous it is to hav an overload of iron. only 2 years ago did i get to know about the danger of having an iron overload. then i started to find out all i could about thal. when one day wen i came upon this site i relized that i had taken thal too lightly. and that i must do something about my iron. since then i hav become obsessed about reducing my iron. i really thank God for opening my eyes and giving me this chance to do something about it. i only hope i can reduce my iron bfor.......
this is indeed a great forum. thank u guys for sharing ur experiences and all ur advice. we really get to learn a lot from this site. thanks to Andy and everyone else.
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Hi Shaziya,
What Canadian Family has told you is correct. Now that I have a better picture of your history, it makes perfect sense. When your chelation was less than needed, your iron built up in organs and tissue. Asunra (Exjade) will remove that excess iron first before you see any decrease in ferritin. Now that you are finally seeing a decrease in ferritin, it shows your chelation program is working. I am very happy that this group has made a difference in your life. :biggrin
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HI ANDY
Thanks. i will let u all know wut happens...
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hi andy
hope u r fine and that ur elbow is better now. i hav seen several references to T2 MRI and ferriscan in this forum.. they are not availabl to us, so i hav never done it.
we r planning a visit to india and do u think i should get it done there? please advice.
i am sorry to trouble u.
thanks
shazi
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Yes, if you have the opportunity, do get a T2* done. Ferriscan would also be beneficial, but if you have to choose just one, the T2* would tell you the most important information concerning the iron load in the heart. It is available in Mumbai and most likely Delhi, but I am not certain where else.
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hi Andy
ok.thank u so much. we will try to get a T2* done there. can u or anybody else recommend me a good haemotologist in mumbai?
i would really appreciate it.
thanks once again.
shazi
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Contact info below for T2* scans.
Piramal Diagnostic Services Private Limited
Ganpatrao Kadam Marg,
Near A to Z Industrial Estate,
Off Worli Naka,
Lower Parel(W)
Mumbai - 400 013
Tel: +91 22 6660 6133 - 37 (5 lines)
Fax: +91 22 2494 0064
Email: info@pds.piramal.com
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thank u andy. thank u so much for the address. u do not know how much i appreciate it. i will contact them and make an appointment...
shazi