Best Iron Chelation Option - Thalforum

Vik · January 29th, 2005, 02:58 PM

Hi guys,
there is lot of talk on L1 and Desferal. The politics of the issue has exceeded the purpose of debates. Here is US/Canada the drug is not approved and patients are not allowed to take it.....(officially). But L1 and Kelfer is being used elsewhere - from UK - India - Sri Lanka - Australia.

However many doctors still stand by Desferal, indicating that it is still the most EFFECTIVE iron chelation threapy but give credit to L1 for beiing more patient compliant.

ICL maybe on it way but it is gonna be another year or more before its available all across the board.

So, what you personally think is the best IRON-CHELATION threapy? Please justify your reason, has it worked for you, or someone you know?

Vik

vamanjani · January 29th, 2005, 07:17 PM

Dear Vik and all members,
Over the past 30 years it has been clearly established that effective iron chelation therapy with desferal can correct and prevent the consequences of iron overload in patients with thalassaemia, improving their survival. However, inspite of the proven efficacy of desferal, it is difficult to obtain an effective trretment in all patients because the use of desferal is cumbersome and unpleasant, resulting in low compliance.In some countries the high cost of the drug and of supplies for its administration are significant obstacle for effective treatment.Great reasearch efforts have been devoted in developing oral iron chelator in Kelfer.
Deferiprone - Kelfer is the only iron chelator available at present for clinical use. Synthesized in 1982, and after several controversies, licencsed in India in 1995 and subsequently in Europe in 1999 and finally authorised marketing in April, 2004.
Dr. Piga, during the internationlal conference on thalassaemia held in New Delhi suggested that slow infusion of desferal subcutaneously lasting twelve hours chelates iron efficiently. He also emphasised maintainance of safe tissue iron level 1000gm/dl and advised to use good quality needle. If you have fever, do not chelate.Check plasma level and take vitamin C under doctors advise.
Problems of arthropathy occurs in using L-1 in 1st year of tretment and it is often trancient. Many need discontinuation also. Liver fibrosis is more common in thal major patients. Monitor closely for WBC count.
Due to unaffordable price of Desferal, people have found L-1 as cheaper option of chelation.
A versatile approach , therefore, sould be to use Desferal twice a week and Kelfer seven days a week.
I am sure, our other thalforum members may have their own experience of implementing combination therapy and I request them to come out with their opinion/suggestions. Thanks.
Vaman Jani

vamanjani · January 29th, 2005, 07:24 PM

Dear all,
further to my thread on the poll, I suggest all thalforum members to go through - especially thal major patients - the article on iron overload and iron chelation which will give you indepth understanding .
Bye for now.
Vaman Jani

Vik · January 30th, 2005, 12:44 AM

I voted Desferal because I do not know abt L1..never used it!

What about Liver Fibrosis and L1? Is it true that L1 affects the liver adversaly, causing permanent damage?

vamanjani · January 30th, 2005, 06:53 AM

Dear Vik,
he most serious unwanted effect of L1 is a reduction of the number of white blood cells, particularly neutrohils, which play an important role in protecting the body against infection.
It is, therefore, essential that any patient using L1 is assessed for total white cell count aleast every two or three weekSs. Patients having any sign of fever, sore throat or infection should immediately stop usage of deferiprone. It is not advisable to restart treatment with L1 ntl the total white cell count is equal to or greater than 3000/mm3
Patients using L1 experience pain in joints as well as stiffness and difficulties in movement.This may, perhaps, be the result of inflamation that may be caused by the iron transferred by L1. Areduction in dose may reverse this effect. The drug has to be administed under doctors advise.
Other problems like nausea, dizzyness, vomiting, diarrhoea and pain in abdomen occur in some patients using L1.
Zince deficiency may also develop in patient using L1 and finally
Liver toxicity.
ALT (INCREASED LEVEL OF LIVER FUNCTION TESTS) REPORTED IN MULTICENTRIC STUDY WHERE GENERALL TRANSIENT AND OCCURRED MORE COMMONLY IN PATIENTS WITH hEPATITIS C.Fluctuating live function tests have reuired a small proportion of patients to stop suing L1.One paper suggest that live fibrosis may progress more rapidly in patients using L1 that those using DFO.
Three independant pathologists carried out studies on serial liver biopsies from 56 patients with thalassaemia particularly in multicentric study in Italy, have so far failed to report progression of fibrosis. However, prospective trials should be undertaken to resolve this issue.
Where people have got used to Desferal, should continue with the treatment and elsewhere people who can afford, or otherwise as a last alternative, combine Desferal and usage of oral chelator in L1 UNDER EXPERTS ADVISE.
hOPE, THIS WILL EDUCATE OUR MEMBERS TO A GREATER EXTENT.
vAMAN JANI

mohak_arora · January 31st, 2005, 12:14 PM

hi all,
i voted for desferal as i have used desferal and kelfer both and i think desferal is the most effective and safe iron chelator.as i hav not used L1. and i dont know about it
mohak

thalBabe21 · February 5th, 2005, 02:08 PM

Hello...
Well i personally think the the desferal is the better iron chelator, there are less risks involved with it.. And the only reson countrys like sirlanka are using them is because it is cheeper for them, as desferal is much to expensive . But here in canada and the states we have health care and ways to get the deferal. I mean as a last resort specially there in india and sir lanka its fine to use the l1 to prolong life expectances but here in canada and the states it has not been approved for very founded reasons. There is always a positive and a negitive to every drug, but L1 has to many negitives that must be considered before it can be safe.. This is my personal opinion and i hope it dosnt sound to pushy..

Anyways I hope all of you are stayin healthy and save .. And doing all your meds..
Take care
N.

jayendra · February 14th, 2005, 12:15 PM

I have voted for Desferal since I feel that thalassaemics who are well chelated and comply well with Desferal should avoid using Kelfer or combination therapy due to its side effects. From whatever reading I have done I feel that combination therapy is suggested for those who are complying poorly with desferal and their Ferritin is at a higher level and hence the this therapy if used for a shorter period could excrete more iron.

Vik · March 8th, 2005, 06:08 AM

Quote:

Originally Posted by jayendra

I have voted for Desferal since I feel that thalassaemics who are well chelated and comply well with Desferal should avoid using Kelfer or combination therapy due to its side effects. From whatever reading I have done I feel that combination therapy is suggested for those who are complying poorly with desferal and their Ferritin is at a higher level and hence the this therapy if used for a shorter period could excrete more iron.

thats about right, pretty much what thalbabe wrote as well. I have too read about the long term side damaging effects of Khelfer/L1 on the liver but havent come across a comphrensive artcile explaining it in greater detail. If you folks come across one, do let me know.

Thanks

Woplip · March 13th, 2005, 04:07 PM

I'm a very good cholator and about 4 years ago i started taking feriprox (clinical trial neame for deprifone). after twetny years of needles, two years ago i went on deferiprone only (i do still have desferal with my blood though). Since I stopped desferal my ferritin has increased a little. I did some research and spoke to some doctors who have been looking after thal patients for many years. I was told that, for the majority of people a combination therapy is the best and that desferal is much better at displacing iron from major organs, i.e. heart, liver etc. So when i was using both i worked heard to make sure my organs had little or no iron in them and the feriprox seems to be keeping that way. I would say it is imprtant to take the tablets at regular intervals. I went from twice a day to three times and saw my feritin improve.

Vik · March 27th, 2005, 11:07 AM

I think few years down the road, we might see ferriprox finally being registered with FDA (food and drug administration) in US/Canada but for now patients in North America here have no choice but to use desferal.

Vik · April 23rd, 2005, 12:29 PM

Although 20 votes is not a huge number.. but majority people here support a combination chelation threapy.

I wonder what the doctors have to say about this....especially in North America and Other continents where L1 is approved.

azeemda · April 23rd, 2005, 04:38 PM

I am using Desferal (by pump)for my children for the last 24 years.. and so far not any side effects..and their ferratin level is between 500-600.Alhamdulillah.
Azeem

sahil · July 7th, 2005, 10:24 AM

Quote:

Originally Posted by Vik

Although 20 votes is not a huge number.. but majority people here support a combination chelation threapy.

I wonder what the doctors have to say about this....especially in North America and Other continents where L1 is approved.

hey vik how r u doin...???? i am from india in mumbai city . the best haematologists over here has adviced me to take kelfer(250mg) n desferal (500mg) 2 vials every day.this is coz my ferritin is 9000. coz i had my spleenctomy done in march 2005 it was 2500 bfore it n went to 9000 after it. dr has told that there r no side effects of the combination.well he God for all the thalassemics here in india.reply. God Bless Everyone!!!!

avneet · July 7th, 2005, 03:11 PM

hie guys,
i started my desferal when i was 20yrs old.
before that my ferritin report was between 1500-2000. when an increased was noticed (2700). doctor suggested me kelfer but it didnt suit me at all,
so i am on desferal alone
frankly speaking i hate taking them and hoped that kelfer would have suited me
well the truth is i have to take desferal and i try my level best to keep regular on taking it

avneet