Chelation question

Sharmin,
Great to hear about Little A's achievements. Congrats to Little A..Yayyyyyy

Andy,
we were also one of those many parents who were confused, scared to death about our child's well being when 1st diagnosed with Thal Major condition. It felt like a death sentence for the whole family. This forum and specially your reply gave us hope and numerous information to cope with the initial shock, anger and all the emotions we felt. Today our child is growing beautifully, enrolled in many sports and Thal is just a part of our life. We are so glad we found Thalpal and feel blessed to have Andy here.

Bostonian,

Thank you. When I see that my efforts help people through difficult times, I find a renewed inspiration. I never imagined that I would some day become a major figure in the world of thalassemia. I only hoped to help people find answers. But finding myself in a position of trust on an international scale, I realize that one person can make a real difference in the world when his or her intentions are pure. At times, I am simply amazed at the force that our thalpal has become.

I wish every new parent of a thalassemic child could somehow come to us, so that the fear and desperation can be put aside and the parents can get on with the task of raising a child. It must be the most heart-breaking thing to be told your child is thal and then go online and find some outdated information telling you that your child can never survive into adulthood and have a normal life. I want to remove that entirely from the minds of parents who have been confronted with this reality.

Andy Thanks a ton for all that u have done for thal and their family. And i am sure u know that we trust you more than the doctors....not blaming doc but at times they are too busy to listen..... to understand........ and at times they are not updated about the new studies  etc or they dont feel it to  be a necessity to inform us..............
But anyways no hard corner for them as they are the ones who saves so many lives and will cure my child too.............finger crossed.......

And Thank you poriton for letting me know that there is no difference btw the two medicines chemically ( Asunra n Desirox).

Ideally, chelation should never stop because the breakdown of red blood cells and release of free iron never stops.It has been my observation that patients who take chelation breaks are those most likely to suddenly have a bad T2* score.

Let me share my own bad experience. Recently i observed my own exp. In November 2005 i stopped the chelation with desferal(I was taking only desferal as Exjade was not launched and was having side effects of Defriprone) due to my examination and various other reasons.I had started also hormone therapy before six months. In Jan 31,2006 some other pro. was started till end of March 2006. In last week of March i was diagnosed with Diabetes.
So , now i believe that it was the real reason , the brake in chelation and hormone therapy at high s. ferritin cause diabetes.
Dharmesh.

Lena and Sharmin, you are welcome. One day 9 years ago, I read a post from an upset, frustrated young woman whose question had gone unanswered. I had two realizations that day. One was that someone needed to be answering these questions. The other was that thals and their families are kept so busy taking care of themselves and trying to stay alive that they often did not have the time or the energy to reply. I became determined to help and the rest is history.

We are thankful to you dear Andy bro.
Dharmesh

Andy,
I cannot thank you and this forum enough for all the information that I have been gaining ever since we discovered that our lil. princess was thal major.

Initially, it felt very bad and seemed that we did not have any help. But once I started following this forum I must say that it has renewed our hope to raise our child absolutely normally and provided much needed faith & believe to go on. Today, lil. princess is close to 2 yrs and coping well and hope for the best.

Really appreciate all your contribution and that of all the fellow members on this forum.

Poirot, correct me if I am wrong, but I believe your success is due solely to chelation with Kelfer. Basing the chelation regimen on iron stores is the key to success.

Apologies for the late reply, Andy.

Yes, you are correct - my iron levels have come down SOLELY due to Kelfer. I was part of the first group of patients worldwide that start chelating with Kelfer back in 1988. Average dosage for most of the past 24 years - 5.0-6.0 gms per day. Kelfer saved my life, and many thanks to Cipla for staying the course, despite the early adverse publicity.

Cheers

Yes, you are correct - my iron levels have come down SOLELY due to Kelfer. I was part of the first group of patients worldwide that start chelating with Kelfer back in 1988. Average dosage for most of the past 24 years - 5.0-6.0 gms per day. Kelfer saved my life, and many thanks to Cipla for staying the course, despite the early adverse publicity.

Cheers

Dear you said earlier that your ferritin was as low as 95 ... was that only with Kelfer or you used combiantion therapy . And if you say 5-6 gms per day, that means 10-12 500mg tablets per day, would you please shed more light on how you used to divide the doses? One of our friends here posted that on average desferal + kelfer removes 1200 ferritin per month (just an estimate), can you tell your estimation that on average how much this 5-6gms dose will remove iron from a body. So far combination therapy has been the best, but if one goes on Kelfer only and say he/she have high ferritin of 8000, how fast it will remove iron if dosages are increased and well tolerated?

Dear you said earlier that your ferritin was as low as 95 ... was that only with Kelfer or you used combiantion therapy . And if you say 5-6 gms per day, that means 10-12 500mg tablets per day, would you please shed more light on how you used to divide the doses? One of our friends here posted that on average desferal + kelfer removes 1200 ferritin per month (just an estimate), can you tell your estimation that on average how much this 5-6gms dose will remove iron from a body. So far combination therapy has been the best, but if one goes on Kelfer only and say he/she have high ferritin of 8000, how fast it will remove iron if dosages are increased and well tolerated?

Dear Waleed,

This is a very difficult question to answer: estimate how much iron is removed by Kelfer per month, thereby reducing Serum Ferritin levels, not least because Ferritin is only a partial proxy for the total iron in your body.

My experience: when I started with Kelfer in 1988, my Ferritin levels were c. 6,000. This dropped quickly to c. 2,500 levels over 3 years. Then it persisted at this level for nearly 5 years, before dropping to 1,500 levels over the next 3-4 years. It took another 3 odd years to bring it to the 1,000 level, and it has been below 500 level now for the past 5 years. So, as you can see it was not a straight line. During this period, I was on an average transfusion schedule of 24-26-30 units per year.

When I was on the peak dosage, most part of the past 24 years, I used to split the dosage into three - 8-hour cycles. However, recent research shows that it is even better to split the dosage into 6-hour cycles as iron-excretion from Kelfer peaks in the 1-hour immediately post ingestion, if fasting, and 2-hours, if fed, and then starts tailing off. However, the more important news is that recent research shows that you can go up to 100mg/kg/day of Kelfer safely, if you have had no side effects earlier.

Combination therapy - kelfer + desferal - this is the gold standard of chelation treatment today, backed by years of data. However, I just hated Desferal infusions and once Kelfer was available, dropped it completely. Not advisable, though, with Ferritin levels above 2,500. Maybe my iron curve would have been straighter if I had used desferal, in combination.

Now, how much iron does Kelfer remove? It varies based on your physiognomy and specific iron load, but, on average, you should expect a dosage of 75mg/kg/day to remove about 6-20mg per day. Remember that each blood unit of 300ml gives you 175-200mg of additional iron at each transfusion.

Research has shown that Kelfer works faster in a higher iron overload situation, compared to lower iron levels. But, if someone is at 8,000 ferritin levels - that is a fairly critical situation - and I would never ask such a person to go on to only Kelfer. A high dosage of Kelfer (120mg/kg) with nearly 24*7 infusion of Desferal (30-40mg/kg) may be the path to go here.

Hope that helps.

Cheers

Poirot