Need complete suggestion for my condition

Hi everyone, I've posted my thalassemia case in the thalassemia major thread, I need some more refrence, information, and suggestion to lower my iron level.

I'll post later on my latest result (i'm not with the result right now) i've done some mri liver scan and blood feritin test.

the thing is my iron level wont get down below 4000...

I want to know the best thing to avoid, the best to consumed and what to do.

At the momment I'm kind of addicted to coffee, but not too much... the most i would drink 5 cups a day, and for tea i think it will be 3 cups a day. (note : coffee is always wilk milk :P)

For meat, my fav is pork, fish, and chicken else i dont eat at all (maybe beef once in a while).

for veg i dont really ate veg that much because i know the green one have higher iron level, and white one is countable,

fruits i ate almost everything but not too much / often either.

And for now my doze of desferal injection is 2000mg doze (4 bottles of 500mg) and i do it for 6 days a week.

Can you please suggest me the best diet menu or method, the best thing to do with desferal injection, maybe the doze or the method for hours injection (is related with the result if we do it on 12h / 2000mg desferal with 10h /2000mg desferal? if it is, wich one better? and is it best to take on night at sleep or at morning when we do our activities?)

If I should take combination desferal injection and oral medicine like ferriprox and exjade, what is the doze? and any idea where can i get one?? (hope it's cheaper than in singapore).

I really wanted to get this iron level lower as possible, kind of burden me for a while..

Thank you all,

May God Bless Us.

Hi Jlyarta,

I'll try to answer your questions as much as i can.

To lower iron ,the best thing to avoid in diet is red meat,and pork comes in red meat,doesn't it?
Iron in red meat is different from iron in vegetables,iron in red meat is called heme iron which is easily absorbed in the body,while iron in vegetables is called non-heme iron,which is not very easily absorbed.Having tea after meals can reduce iron absorption in the body,which is good.
Fruits are good,as they contain other essential minerals.

For desferal dosage,from http://www.novartis.com.au/PI_PDF/dsf.pdf

In most patients average daily doses of 20 to 60 mg/kg body weight are adequate. Patients with a serum ferritin level of less than 2000 microgram/L require about 25 mg/kg/day. Patients with a serum ferritin level between 2000 and 3000 microgram/L require about 35 mg/kg/day. Patients with higher serum ferritin levels may require up to 55 mg/kg/day. It is inadvisable to regularly exceed an average daily dose of 50 mg/kg/day except when very intensive chelation is needed in patients who are no longer growing. If ferritin values fall below 1000 microgram/L, the risk of Desferal toxicity increases. Therefore, it is important to monitor these patients particularly carefully and to consider lowering the total weekly dose.

Calculate your dose according to your weight.For how much time are you taking desferal,12 hours is good,but can you do it round the clock,for a few days,or i remember one of our members said that he gave his daughter 60 hours straight desferal after transfusion,to bring ferritin down.
One more thing you can do is to take 250 mg of vitamin C after half an hour of starting your pump,vitamin C helps in releasing more iron in the blood stream,so desferal can remove more and more iron.
Combination of desferal and ferriprox has proven to be very very effective,dose of ferriprox is 75mg/kg  of body weight,so again calculate the dose according to your weight.
The distributors of ferriprox in Indonesia are

Ferriprox® Distributor:
PT United Dico Citas
Jl. Johar No. 5
Jakarta 10350
Indonesia
Telephone: +62 21 314 9338

And distributors of ferriprox in Singapore are

Ferriprox® Distributor:
Pharmaforte Singapore PTE Ltd.,
6 Tagore Drive,
#03-11 Tagore Industrial Building
Singapore 787623
Telephone: 6452 8488
Fax: 6452 7787
Contact: Kwan Yew Haut
Email: enquiry@pharmaforte.com.sg
Website: www.pharmaforte.com.sg

I am sorry i don't know about the price of ferriprox in these countries but in my country it costs Rupees 3400 for 100 tabs of 500 mg,and 3400 Pakistani rupees equal 62.5 Singapore dollars.

May be our member Puja who lives in Singapore can help you find about the pricing,or you can just call the distributors.

Combination of Exjade and desferal is not approved by Novartis (the manufacturers) but we have a few members who are using the combination.But you should be monitored very closely by your hemo to use this combination,don't start it with out your doctor's approval.

I hope i covered everything,other members will fill in the spaces i left,Good luck with your chelation and keep updating.

Zaini.

thank you Zaini, I'm so grateful to find this website.

about Pork, how much pork can effect my ferritin level? how about less taking? if beef and the others red meat i can be sure not to take at all. but pork.. i'm afraid i cant. but i'll try to reduce my consumed pork, by having more tea of course.

Fruits can have some iron or not? So what fruits can i consume safely?

How to do the combination? and for first time use can you suggest me some method about ferriprox? I heard Ferriprox may have some issues agranulocytosis or white blood cells, i wonder what kind of side effect it might have..


as for diet and optimize my desferal i've drinking more tea these 3 days.

and i've heard from another topic that Vit C can help me reduce iron with some method within desferal time, can you explain more to me about this?


I've been wondering what make the diffrence with 2000 mg desferal a day with 10 hours injection time and 2000mg desferal a day with 12 / more hours injection time?

if i decided to give my desferal about 24 hour a day, how many mg in total per day should i take?

There's so many things that i still dont understand perhaps, after living for so many years (shy)..

thank you very much for the information and else... i really appreciate that.


note : sorry for my english, not very good

this is my result last week..


12dec08

Test           Result    Refrence
Haemoglobin    12.8      ( 13.5 - 18.0 g/dL)
RBC            4.59      ( 4.50 - 6.30 mil/uL)
Haematrocrit   35.9      ( 38.0 - 52.0 %)
MCV            78.2      ( 76.0 - 97.0 fL)
MCH            27.8      ( 26.0 - 32.0 pg)
MCHC           35.5      ( 31.0 - 36.0 g/dl)
RDW            13.7      ( 11.0 - 15.6 %)
Platelet       263       ( 140 - 460 ths/ul)
WBC            7.38      ( 4.00 - 11.00 ths/ul)

ferritin      9970 ( 22 - 322 ug/L )

and i dont know what this mean but i'll write it, this is from my mri liver scan.
TR/TE/PA°                     liver(1)   liver(2)    liver(3)   muscle(1)    muscle(2)
T1 : GRE 120 / 4 / 90°         93,       90,         120,        571,        461
PD : GRE 120 / 4 / 20°         91,       89,         119,        575,        500
T2 : GRE 120 /9 / 20°          45,       42,          41,        435,        439
T2+ : GRE 120 /14 / 20°        38,       36,         40,         315,        338
T2++ : GRE 120 /21 / 20°       41,       38,         33,         253,        262

maybe Andy or someone more expert can explain to me what this supposed to mean?

thank you..

Using the calculation tool found at http://www.radio.univ-rennes1.fr/Sources/EN/Hemo.html the following results are found.

Results:

LIC calculated using T1 sequence: 330 µmol/g
LIC calculated using PD sequence: 310 µmol/g
LIC calculated using T2 sequence: 170 µmol/g (saturation with probably underestimation)
LIC calculated using T2+ sequence: 120 µmol/g (saturation with probably underestimation)
LIC calculated using T2++ sequence: 90 µmol/g (saturation with probably underestimation)
LIC estimated using T1 sequence: 330 (±50) µmol/g (N < 36 µmol/g)

(Major overload  (LIC=350µmol/g, Signa 1.5T))

You are in a condition of serious iron overload and only a commitment to aggressively chelating can help. This is blunt but if you are to fight this, it will take a serious commitment. Forget Exjade for now. It does not work fast enough to be worthwhile in such a case, unless you can take 40 mg/kg daily and that is an expensive prospect. The best would be if you could take a combination of L1 (Ferriprox, kelfer) and desferal. If you cannot take L1, you are going to have to chelate 7 days a week using desferal for a minimum of 12 hours at a time and preferably 18-20 hours at a time. 24 hours a day would be wonderful if it can be managed.

Many people have asked why I plead for them to send me desferal. This is exactly why. Patients cannot afford adequate amounts of desferal. I do everything I can to encourage people to send me extra desferal but most of the time, my pleas fall on deaf ears. Well, people need it and when others say, yeah I have some I'll send you, I have no more than a 50% rate of that actually happening because people are too busy in their private lives to be bothered to help others. Considering that there is no reason at all for me to even be helping, it kinda sucks when people can't be bothered to help when thal is something they know first hand in their lives. I am tired of begging, so everyone out there, please tell me the answer. Should we just ignore people like jlayarta  or are there people willing to help? This group could do so much more if people would be more willing to take the time to help others. jlayarta  needs more desferal than what is affordable. Please help.

Thank you Andy, I have no idea how serious my MRI result would be.

I still not really getting where you're telling me about desferal  minimum 12 hours at a time or 18-20 hours, even you said 24 hours. what does that mean? Is it using the same doze as now? (starting yesterday i'm using 5 vials with 10 hours).
And what about the combination of ferriprox and desferal? how to start? I have never consumed ferriprox before, should i test my body response first? or just go with the combination instead? If so, how is it ?

What about the Vit C trick Andy? Would you explain it a bit to me?



Thank you Andy

Desferal only works while you are taking it, so the longer period of time you are using it, the more iron that is chelated, even if you are spreading the same dose over a longer period by diluting the desferal more. 5 vials will do much more if you take them over a longer period of time than 10 hours. This is a proven fact. With desferal, the length of time taken is just as important as the dose. 24/7, which means 24 hours a day, 7 days a week is often recommended, as the effect is dramatic in ferritin reduction. What you need to strive for is extending the period you are taking. You can dilute the desferal more to make it last longer and it still has a good effect but for more time.

L1 (Ferriprox) has to be taken under a doctor's supervision, as white blood cell counts have to be regularly monitored. Together with desferal, it provides the best chelation known, as L1 is very effective at removing iron from the heart. It is very cheap in India where it is known as kelfer.

A small dose of vitamin C (250 mg maximum) should be taken within 30 minutes of starting desferal as this releases more free iron which can then be removed by the desferal. Do not exceed 250 mg of C daily when iron overloaded.

Is there a local thalassemia association where you are located? It may be possible to set up imports of the Iranian version of Exjade, which is much cheaper than Exjade, so an association might be helpful in making this happen. I have direct contact with the representative from that company in Iran, and we can try to make this accessible to Indonesian patients if there is an organized effort. Currently there are some small trials taking place, combining Exjade and desferal and early results are encouraging so this may also soon become an option.

I see, i tought it will be the same if the doze was same, I'll try 12 hours first, isnt it risky to get irritation on skin when we take it too long? i tought 24h/day means we inject it twice with 12h. but if 5 vials and 12/24h a day may be good if it quite safe, and the chrono one is so small that might be good to have it walk around when we're work as well.

If i'm wearing it 24h/day, any tips how to pass security check in the building? tought it will sound beep beep beep :p.

--

As for Ferriprox I think it's available in Indonesia with quite reasonable price (thanks to Zaini for the info) I've not yet checked the "selling" price here, but i think it will be good.

Vitamin C 250mg ya? let me search later, if i'm not forgotten yet.. i think i've seen some article about vitamin c can make desferal un effective.. but i'm no idea where i read that now, thats why i'm little confused before.


Thalassemia Association are available here in Indonesia, but unfortunately they're having huge numbers of patients and less resources.

I'm really embarrassed about the situation in Indonesia, here.. the thal association are quite picky.. they're giving the desferal to poor people and also it is only one or two vial even the patients weight is over than 40kg. So I'm not the poor but not the rich couldnt afford to buy their suggested price (usually even more expensive than bought from Singapore). But after Indonesia Rupiah drop in the market, i think it's expensive in every ways.

About the Iranian Exjade how much does that cost? and the shipping usually use what? is it ok to ship desferal? if you want the association address i'll look up into it later.


Thank you

Hi jlayarta  ,

i tought 24h/day means we inject it twice with 12h. but if 5 vials and 12/24h a day may be good if it quite safe

its mean  that , if your are taking 4 vials 500mg in 12 hours you may increase the time but not the vials/dose of desferal , okiey , if you are taking 4 vials in 12 hour you cant exceed to the your desferal dose of day but you may increase the time more than 12 hours and no# of desferal vials will remain same ( 4 ) . you cant take more than 4 vials in a day/24hour ... it will b good if you can manage to increase the duration of chelation with desferal more than 18 hours .. i  do take desferal in 21hours a day 3 vials ( according to my bod weight ) ....
about security check : you may show them that you need to have this device with you soo let you pass through  the security check with your pump device , i dont think that they will argue to you abt ur pup ....

along  with desferal i m using Ferriprox as well ...

Ferriprox : i m also taking ferriprox 500mg 9 tablets a day , its helps to remove iron from heart ,  in some patients experienced a side-efffect of this mediicne that is decrease of white blood cells , but Thax GOD i dont experienced any side-effect of this medicine , i m using this medicine since last two years and still using it ,,, while you are going to start treatment with this medicine , all you have to do to keep a complete check/record of your Platelets count, WBC ( white blood cell ) ...
i use to have CBC ( Complete Blood Count ) test done on every 10-14 days to keep the check on my WBC levels ... its safe to take if once it's suit's to you .... dosage should be settled y your doctor and keep consulting to the doctor abt the effects and treatment with this medicines....

Vit-C :

Patients with iron over load usualy become  Vit-C deffifient , probably because of iron oxidises th vitamin. [bgcolor=#ffff00]As aa adjuvant to chelation therapy, vitamin-c in doses upto 200mg daily may be given in divided [/bgcolor] doses, starting after an intial month of regular treatment with desferal ( see special warning and precautions for use ). Vitamin-c increases the availbility of iron for chelation. [bgcolor=#ffff00]In general 50mg suffices for children  under 10 years of age and 100mg for older children.Larger doses of vitamin-c fail to produce any additional increase in excretion of the iron complex [/bgcolor] .

International  Package Leaflet
Information issued: September 2005

® = Registered Trademark

Novartis Pharma AG, Basel, Switzerland

i quoted this piece of information to that Desferal's Leaflet that is issued by the compay ( Novartis ) for the product Desferal  ..

i hope i covered all the main isseus , if i missed something then please let me know i will try my best to answer that  .....

Best Regards
Take Care
Umair

Hi Jlyarta,

Your ferritin is quite high,but believe it that you can lower it down,combination therapy of ferriprox and desferal is the best,please start taking the same dose of desferal for longer hours,24/7 would be really good.
When you start ferriprox your doctor will advise you to test your WBC levels fortnightly ,because it is a possible side effect of ferriprox that it can lower your WBC,but we have so many members who are taking ferriprox and have no issues,you can try it.My own daughter is on combination of ferriprox and desferal and her last ferritin reading was 1259.

Good luck with the chelation.

Zaini.

Hi jlayarta  ,
here r some links, these links will help you to understand how Exjade , Desferal and ferriprox works . it will help you to understand your treatment plan and to make your own suitable treatment plan for chelation ....
-------------------------------------------------------------------
1) Thread's Subject : Comparison between the three iron chelators ( by Prof. Cappillini, Cairo 2007)
Link for this thread : http://www.thalassemiapatientsandfriends.com/index.php?topic=1071.0

in this thread there is a file  , download that file , that is a power point presentation , check that presentatio that will teach the way how those 3 chelators ( Exjade, Ferriprox, Desferal ) works and how you can take most of the benefits to those chelators ....

Here is a direct link to download that file : http://www.thalassemiapatientsandfriends.com/index.php?action=dlattach;topic=1071.0;attach=582
----------------------------------------------------------------------------

2) Thread's Subject : especialy to Andy question abt chelation 
Link for this Thread : http://www.thalassemiapatientsandfriends.com/index.php?topic=1689.0;topicseen

its my thread , in this i shared my experience of chelatio when and how my ferritin dropped from 9650ng/ml to 3582ng/ml in just 2 months (normal range is 350ng/ml) , i hope reading this whole thread will help you to plan or review your chelation plan ... in this thread there is my complete treatment plan that i was on when my ferritin dropp'd that much in very short time .....i hope you will find this thread very helpful . dont forget to feed back about that thread hahhahaha .... and please read that thread carefuly and completely ... BEst of luck for your treatment and chelation .... i hope your ferritin will also dropp that much quickly as mine dropped ......
-------------------------------------------------

Best Regards & wish you all the best of luck  for you health
Take Care
Umair

Hi jlayarta,

One benefit of diluting desferal more is that it causes less irritation when it isn't so concentrated. I agree with what Umair said. Just talk to security about your pump. Pumps are more common than you may realize as many diabetics also use pumps for insulin. It should cause no problem if security knows about this. You don't have to explain thal. Just let them know it administers a necessary medication.

Osveral (Iranian Exjade) would have to be registered in Indonesia if it isn't already. This is why I asked about thal associations. They could be useful in helping to make this happen. Price varies according to licensing fees and government duties. If the thal association works with the government health agency to bring Osveral into Indonesia, perhaps duties can be minimized.

Umair also had very high ferritin and he has turned this around and is headed in the right direction. A stubborn commitment to chelation and winning this battle is what it takes. We are here to give any support and info we can.

Umair, Zaini, Andy, thank you all..


yesterday I used 5 vial desferal of 500mg, and use it in 12h.

The fact is My urine are not so reddish / yellow as usuall.. is the method working? When i'm using it for 10 H my urine is so red!! i tought the more red is better ? CMIIW


Andy : Indonesia dont have any kind of Exjade i think, Thanks to Zaini I only found Ferriprox as my friends search for Ex Jade i think its a bit hard and expendsive. Also when it comes to Indonesian Costums and lisensing also gov duties / tax it will end up unaffordable.
From my Own EXP, Indonesian Thalassemia Associations does not really help at all, thats why my mothers forgot where she put the contact and address..

Thank you once again..

Jlayarta,

Why don't you try to increase the vials to 6 for 12 hours? It is only one vial more, no big difference and see what comes out. Together with vit C, of course.
Furthermore ask your doctor whether you should go for intravein desferal and stay in hospital for 3-4 days and have 24h desferal.I do not know if you do it in your country, this is an aggressive scheme with good results though.
It is good you are serious about it and try new schemes.I think you'll be successful if you keep up.

Jlayarta,

My hematologist always recommend IV desferal whenever the ferritn is so high and it always work and get rid of it very quickly,  as Lena said ask your doctor aout this possibility

manal