Thalassemia Patients and Friends
Discussion Forums => Iron Chelation Corner => Topic started by: Lena on January 19, 2012, 08:22:49 AM
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To all,
when your ferritin is 142 and heart and liver, according to MRI results, totally clear, your Lic 1... then which is the chelation scheme you should care to enter? What do you think?
I am placing this question to all, not because I do not know, but in order to underline things regarding chelation...as I have, time and again, witnessed some very incorrect schemes suggested by doctors.
Lena
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Oh i wish Little Z will get there soon,but not yet.
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Hi Lena,
There is no right or wrong chelation scheme, it is a protocol your doctor is following. In Canada, the chelation stops completely after ferritin reaches below 300, starts again after 2-3 months. Again, it is not a question whether it is right or wrong. The objective of chelation is clearly to keep the ferrtin level at minimum target of 300, as long as it is done, there should be no concerns.
Some places may choose to continue even if the ferritin is below 300. That is the choice and will of parents, patients and doctors.
Hope this helps.
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I also think it also matters if the chelation is for a growing child or adult. In Boston, the doc always said it is a delicate balance between adquate chelation and making sure the important minerals do not get chelated to affect the growth of a growing child.
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To all,
when your ferritin is 142 and heart and liver, according to MRI results, totally clear, your Lic 1... then which is the chelation scheme you should care to enter? What do you think?
I am placing this question to all, not because I do not know, but in order to underline things regarding chelation...as I have, time and again, witnessed some very incorrect schemes suggested by doctors.
Lena
Lena,
My ferritin levels are also now around 100-125 and have remained at this level for sometime. I have continued a reduced dose of chelation, which I achieved through trial and error, to maintain this level. I was on 9x500mg per day of L1, reduced it to 3x500, found that to be too low as Ferritin went up, and now I am on 5x500, which seems to be my steady dosage.
From a math perspective, each unit of blood roughly adds about 200mg of iron to your body - each chelator excretes a diff quantity of iron per unit of dose - for eg, L1 removes around 3-7 mg of iron per 500mg dose in a half-life cycle of 12 hours. The range is not exact, it depends on your physiognomy, but it is fairly accurate IMO. So, once you are below 150 (normal, upper end limit for adults), you can work out the maintenance schedule you require based on your chelator, your transfusion schedule and your body.
Hope that helps.
Cheers
Poirot
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Thank you all guys for your replies,
I am not at a loss as to which chelation scheme to follow. I only forwarded this question just to let you know that chelation should not be stopped or postponed or reduced too much, when one is in my shoes. In fact, my doctor-for my case- suggested following chelation scheme:
13 ferriprox per day and 4 times X 6 desferal per week.
Poirot,
my transfusion programme is 1 unit every 15 days.
I am sure considering my ferritin and my being heart - and- liver- clear, one should regard this scheme as too much. But it is not. That's what I needed to underline to all of you. IT IS NOT, if you care to keep your ferritin and T2* low.
Lena
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Thank you for sharing Lena. I have a long way to go. I wanted to tell you that T2* is possible in the Netherlands, in my hospital now. [Although I won't undergo this test now. That's fine for me]
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Ideally, chelation should never stop because the breakdown of red blood cells and release of free iron never stops. If you are monitored regularly, this is practical. If not, once below 300, reduction in chelation should take place, but many doctors will cease altogether to make sure iron stores do not get wiped out completely. Developing a chelation program like Lena's and Poirot's is ideal. Never stop if possible but the level of chelation should be based on ferritin levels and annual scans. Each patient's treatment program should be based on that patient's need, and frankly, all transfusing patients need regular chelation. It has been my observation that patients who take chelation breaks are those most likely to suddenly have a bad T2* score.
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Totally agree with you, Andy and -according to my doctor- deterioration happens not only to heart and liver T2* but also to LIC score that tends to increase rapidly once above 1.
Lena
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Hi All,
Please advice me on my child's chelation. He is 2.9yrs and I am giving him 400mg Asunra daily 200mg afternoon and 200mg night. But his ferritin is increasing with 200 every 2 and half months when i check his ferritin. I consulted the doc yesterday and he said to give Desferal500mg through drip for 24hrs immediatly next day after transfusion.when i went for transfusion today few other patients advised me to stop taking asunra and start with Desirox.....I started with Asunra in the month of June 2011 with 100mg then 200mg then 300mg and recently from 2 mnths 400mg. Now he is 14.5 kg.
Is Asunra not working for him????????????His ferritin now is 2500.
I am not going for Desferal tom as I am confused and need ur valuable advice.
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Binita,
My suggestion is give it time. This same pattern is seen in patient after patient, and especially in younger patients where growth dictates a constantly changing dosage of Exjade (Asunra, Desirox). The drug is working but it takes some time to see the results in ferritin tests. Often, we don't see a downward trend in ferritin until a year or more has passed. Just make sure that the dose continues to increase as his weight rises. His current dose has only been used for two months, so realistically, you should not expect to see a lower ferritin level at this time. Many parents have made the mistake of panic and taken their children off the drug because they did not see quick results. Please have faith in the experiences of others and continue the drug, as long as there are no side effects that would prohibit continuing the drug.
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Thank you Andy for your valuable advice and I will continue the same medicine. His weight is 14.5 kg. Should I give him 500mg or stick to 400mg?
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Andy sorry for the repeated question but desferal 500mg along with drip has been asked to give only once after transfusion and then to continue with Asunra as usual. Should I add on to Desferal for my child's chelation or only Asunra should help. N Asunra should I give him 500mg as he is 14.5kg now.
Thank you.
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Hi Binita,
The desferal drip would help, but I don't consider it to be essential. 500 mg of Exjade would not be too high for now. He will soon be at the weight where that is recommended anyway, and it would help the ferritin to drop more quickly. 400 is probably a bit low considering the current ferritin status.
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when i went for transfusion today few other patients advised me to stop taking asunra and start with Desirox.....
Score one for the marketing machine of Novartis.
Binita, Asunra and Desirox are the exact same drug, chemically - except that Asunra is made by Novartis and costs a lot more compared with Desirox, which is made by Cipla. Obviously, Novartis also spends a "bit" more influencing the doctors about their "better" quality chemical.
Just thought that you should know and not waste money on branding.
Cheers
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Poirot,
what is the generic to Ferriprox? Maybe Kelfer? Is it still in use? and how much does it cost now? Do you still use it in India? does it have any considerable side effects? and if someone wants to order it from India how does one proceed?
Lots of questions - thanks in advance for your answers.
Lena
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Lena - Yes - Kelfer (also known as L1) is the generic for Ferriprox. It is still in use in India. Thousands of thal's lives were saved with the use of Kelfer (L1) until Asunra (Exjade) was launched in India. Similar to any drug, there are side effects to Kelfer and the trick is to start with a lower dose and work it to the required dose.
As far I know, without a doctor's prescription, Kelfer (L1) is not available.
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Thanks a lot, Narendra for your information.
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Poirot,
what is the generic to Ferriprox? Maybe Kelfer? Is it still in use? and how much does it cost now? Do you still use it in India? does it have any considerable side effects? and if someone wants to order it from India how does one proceed?
Lots of questions - thanks in advance for your answers.
Lena
Lena,
Kelfer, Ferriprox, L1 are all the same drug - the generic name is Deferiprone.
Kelfer + Desferal is the chelation drug mix of choice in India - this is primarily because Kelfer is extremely effective in taking out iron from hearts (usually the main cause of mortality in thals) and Desferal is better at taking out iron from the liver. This combo therapy or just Kelfer are/is very much the dominant chelation therapy in India.
Our experience with Exjade or Asunra/Desirox has been more mixed in terms of price vs performance - not many haematologists want to go with Exjade as their first line of chelation treatment, especially in thals with already high Ferritin levels/compromised livers.
Cost of Kelfer = Rs350($7) per 50 capsules of 500 mg each. Standard dosage = 60-75mg/kg of body weight per day - so, you can calculate the dosage cost per day/per month. It is available via doctor's prescription only and has to be ordered directly from key distributors (ie not available at pharmacies) - but, generally a friendly Thal in India can buy the drug for you and mail it out to you. The strict monitoring of usage ceased a long time ago, as the drug has now been in use for over 20 years.
The main side effect of Kelfer reported by nearly 30% of Thals is joint pains - knees, and in severe cases, elbows and ankles. However, practice has again shown us that the best way to beat this is to increase dosage over a period of time (4-6 months). This allows the body to adjust to the drug, and usually even if there are joint pains at the starting, they disappear over time, even as dosage is increased. Other than this, different Thals have reported initial comments of nausea, stomach upsets and dizziness - but generally, these side effects disappear within a month.
A severe side effect, reported in about 2% of Thals, is neutropenia - depletion of WBCs. On starting Kelfer, one should monitor WBCs monthly for any change, and one can gradually reduce this monitoring over time. However, given that pre-transfusion CBC is done at most centres, this is automatically monitored. Kelfer should be stopped if WBCs fall below 3,000. Then, restart with a significantly lower dose, and see if the condition persists. Roughly, this condition persists in about 40-50% of those Thals who initially report neutropenia.
Hope this is useful.
Cheers
Poirot
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Thanks, Poirot, your info was very valuable and enlightening.
Thanks a lot for your time,
Lena
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Hi...I know that Ferriprox is good for targeting the heart and Desfaral for the liver for excessive Iron...so which organ/s does the Exjade work better on?
Has anyone heard anything more on the new single does Ferriprox?
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Exjade does clear iron from the liver and heart over time, but not as quickly as the other chelators. It has its best success when the iron load is moderate to low. For high iron loads, combination therapy using desferal and deferiprone is still regarded as the best method, although small trials have shown good results when one of the combination is replaced by Exjade, but more trial is needed. Deferiprone is still unsurpassed for the heart, because in addition to removing the iron, it also has a cardioprotective effect, not shared by the other chelators. I have not yet seen any information that indicates that Exjade works better in one organ than another.
My opinion is that Exjade is a good chelator for lower iron loads, but is not necessarily the best method for attacking a high iron load. A compilation of results from Exjade users around the world does show Exjade to be a capable chelator, with similar long term results to the other chelators. I will also mention that a dose of 32.6 mg/kg was required for iron balance, so the 30 mg/kg may be slightly lower than required. Doses of 40 mg/kg are used when iron load is high. As with all chelators, full compliance is essential.
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I found your post very useful, Andy, as I believe I am in a turning point in my chelation now. The reason is desferal has become more or less toxic (my guess) to me as it makes my heartbeat rise to 90-100 while when on ferripox day my heartbeat is up to 70-80. My scheme is 13 ferriprox per day and 6 desferal four times a week (6X4). The last, unfortunately, leads to a problem, so I am contemplating now to turn into a ferriprox/exjade chelation scheme. Perhaps you remember I tried this for 1-2 months two years ago and voluntarily dropped the scheme by myself. You see, I am a little afraid as, back then, I had stomachburn and took a gastroprotective Nexium 20 pill every morning.
Forgot to mention my ferritin is 150 and last check might prove to be even lower (i will have the resutls in a week), so I am in the "lower iron loads" that you mentioned. Same thing, last MRI was clear for heart and liver and LIC - all within normal range.
During the last years, I have come to conclusion that lower ferritins must be closely monitored by doctors - I mean the chelation scheme, considering that chelators might be toxic when body is more or less clear from iron load.
Lena
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Thank you Andy.
We are waiting for the boys to have the MRI Scan for this year to decide which combi if at all to go ahead with as BB's liver showed moderate Iron level and perhaps to change LB's chelator from Ferriprox to Exjade. Both their ferritin level are good bordering at 500.
Lena I think you have managed all this for yourself brilliantly. Even with an intensive programme with chelation with your ferritin being low, your body has probably always signaled to you that this is right for you but now your body is starting to 'moan' a bit, you know you have to adjust your chelation programme. I feel you have a very strong mind because you know what works for you then you stick to that rather than do what some doctor say as what they say is guidlines and yes they do think about safety but you yourself know what is good for you (along with alot of backup research)....I hope I don't sound rude but I do admire you and hope InshaAllah, God Willing, my boys would manage things similarly.
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Emby,
thank you so much for your kind words. I hope your boys and every thal for that matter, will manage their thal and make the best out of it. I try hard, that is true and always "regulate" my doctor's orders to fit my personal case.
Now I have some great news which made me happy: my last ferritin came out and it has reached 45 now. My doctor proposed to stop desferal or bring it to once-a-week scheme and continue only with ferriprox. That because, as I wrote in another thread, it has become toxic on me, it drops my pressure to 6 and my heartbeat to 90-100, which are normal otherwise This is a sign that, as my ferritin has dropped to 45, I need to lower my chelation rate and of course, monitor things. In my Thal Unit, we check our ferritins every month and do all other check ups periodically, so it is easy to monitor and stay safe as for your ferritin levels.
Thanks again, Emby.
Lena
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Wow 45...that is an achievement! The normal range is between 23 and 540 I think. If our boys reach that point (or about 300) then their doctors would not give them anymore chelation med for sure...at that point the boys may consider taking a break completely or I prefer that they take even 1 tablet, or 1 of their 3 daily dose, every day or every other day for about 6-12 weeks just so that some chelation is still going on in their bodies for some of the 24 hours every day. Lena would you consider this? I dunno..I feel a bit insecure about stopping all together and I dont even take those meds...I'll be thinking 'what if..what if' but if they want to take a break then then I mustn't be 'iffy' about it, it's just for a few weeks then check ferritin level then decide again what to do. Would you consider this Lena? You have been chelating far longer than them and I think for you it would give your body a 'rest'. They also have more units of blood, 4, for transfusions every 4 weeks. You have always been a few steps ahead and you have managed brilliantly so it would work in your favour I think. I am not trying to tell you what to do I'm just asking for your advice because you have far more experience dear Lena.
Emby
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My dear Emby,
I wish the best for your boys and as long as you ask my advice I would reply this to you:
Never-ever- stop chelating. This is, according to my opinion and my doctor's too, a mistake. Lower your chelation dosage, yes - but never stop altogether. That is because, you see, you never stop transfusion and every blood bag brings the ferritin 200 up. No, I have been chelating since 1976 and have never stopped completely. Re-arrange the dosage every now and then, but have not stopped altogether. Do you stop any other medication like anti-oxidants, for example? No. Then why the chelators? Iron tends to pile up in the organs so quickly and before you know it, you will find yourself in the position to try to drop your ferritin level and perhaps with greater effort. Why not maintain it in a certain level with less effort before it starts going up again?
And another thing for your boys: why 4 bags in 4 weeks and not 2 bags every 2 weeks? I try to manage 1 bag every 2 weeks. What I mean, is that it is much easier for the body to maintain a steady Hb and not going so up and so down or take so much blood once a moth.
Of course, I may not know all your personal constraints and see it from my point of view.
Lena.
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Lena,
I may not completely agree with you. In some cases, stopping completely is useful, specially in children. What works for one may not work for others.
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Canadian family,
you may be right as to children, I do not know.
In adults' case however, which I was talking about, things go the way I mentioned. I know some doctors stop even with 500 or 300, but this is not right. Our doctor says not to judge by the ferritin level because deep down inside the organs may be overburdened with iron despite low ferritin and this, I have witnessed with many thals in our Unit.
I repeat that I am not aware if there are any special constraints regarding children (though in our hospital children do not have a break, too). Allow me though, to have witnessed a lot as I have been chelating and researching chelation for more than 30 years...
Lena
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Lena..I get what you are saying that is why I wouldn't want them to stop either...but I'm worried what my oldest sons Dr. might do because she said she would like him to stop in case of toxicity. Actually he told me that one person was told by the same Dr. to stop chelation and the reading for ferritin was up by 2000 after 6 months! You would think she realised this and would not advice this in future.
....But what if, with your heart and liver readings being normal and your ferritin at 45, which is quite excellent, you stopped for two weeks then after transfusion carry on with the same dosage with chelation that you are on (minus desferal or reduced because of it's affect on you), look at the ferritin level and when it drops as low as this then take another 2 weeks off. It's a bit 'yo-yoing' but could this be a safer method? Could this work or not?
Both the boys prefer 4 weekly because they don't want to spend more time than they have to at the hospital and their hb maintains quite well usually above 9.2 pre transfusion.
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Emby,
I understand what you are talking about with the "safer method" you propose. However, what I have noticed with ferritin at the level of 45 is that even in this low range and in the course of taking ferriprox, my urine comes out with a colour and one cannot avoid to wonder:
where does this iron come from with a level of 45?
What I am trying to say is that our body still pours out iron- and remember my MRI is totally clear with no sign of iron whatsoever. There are probably other organs like pancreas or bones or whatever else that spill out their iron and these organs are not measured by MRI.
I believe that is why you should never stop. You should, though, rearrange the dosage in order not to have a toxic reaction in low ferritin( as was my case).
Lena
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Lena,
Congratulations on your 45!!! Well done. Lowest I have managed so far is a high 95!
Emby,
I fully agree with Lena - you do not want to stop chelation ever, if you are transfusing. There are no "safe" levels of iron for a Thal major, for us to sit back and say, eh, now I shall not chelate. You just do not know which organ the iron is targeting - even with ferritin levels below 500, for all one knows the iron is going after the liver or pituitary or spleen or something else.
And, keep in mind that each 300 ml of packed RBC adds between 100-200mg of Iron to the body. So, chelation has to be adequate to ensure that this does not lead to a build up.
And, if you are well adjusted to an oral chelator, just vary the dosage - I just do not understand any doctor who would want to recommend stopping *all* chelation. I can understand the incentive with Desferal, but with oral chelators? And, that applies to a child, as well. Iron is toxic. If your ferritin is not below 100, do not stop. And, not even then.
Cheers
Poirot
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Poirot,
I couldn't have put it better! I totally agree with you. Ferritin should be kept around 100, and that's a fact.
You have also done very well, good for you!
Lena
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Red blood cells are constantly being destroyed in thalassemics. The result is free iron released into the body. Even when your organs are free of iron, there is still new iron released that needs to be chelated. Anytime there is a break, there is new iron build-up that needs to be removed. I am not a fan of the chelation holiday because I have seen so many compliant patients get into trouble once they do take a holiday. A reduction in chelation may be acceptable, but stopping altogether is counter-productive. However, I do understand that the approach does need some flexibility when it comes to children whose bodies are developing, as the chelators can have some negative impact on growth, and minimizing the chelation or taking a short chelation holiday may be appropriate. Organ scans should be utilized to assure that the treatment program is on the right track.
The experience of Lena and Poirot should be studied by others. A well managed chelation program can keep thals going strong, even when only one chelator is used. 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.
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great work!!
Dr. Vichinsky mentioned to us that if there is no free iron in the body chelators begin to chelate iron - which is necessary for the brain and other functions in the body. I am sure that most thal majors struggle to keep iron levels down so this problem has not arisen in the past - however with new chelators thal majors are achieving levels previously unheard of in the thal major population. Perhaps we should keep our ears open about what doctors observe about this phenomena in the future. This applies only to the group of people who have levels below 100. Some chelating agent to bind free iron is constantly necessary - but what that dose should be is what we need to determine.
Best of luck and keep up the great work!!
Sharmin
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An example of how chelation might be altered in low iron patients is Exjade taken at 10 mg/kg daily. This is a very low maintenance level. The whole key to managing low iron levels is regular monitoring of ferritin levels, and adjusting chelation accordingly. Patients who are not closely monitored should not strive for levels as low as 100.
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Who could think we would -someday- have this kind of conversation?
Things have begun to change to the better for thals, haven't they?
Andy is right about free iron circulating in the body, and this is a reason why we take the anti-oxidants as well.
I hope the number of thals approacing the ferritin level of 100 grows on and on. We have more weapons now, you see.
It only takes our good will and devotion to achieve our goal.
Lena
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9 years ago, when I became an assistant at Thalassemia Patients and Friends, I would never have expected to hear that controlling iron so well was even possible. The advancements in treatment in this short period are remarkable and a credit to all those involved in making life more livable for thals.
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... and a credit to people like you, Andy, who made it a life goal to help those in need. Thank you!
Lena
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Researchers and doctors have made great strides...but were it not for you we would not know what is available to us - how to utilize what is available to our advantage - lowering side effects and maximizing efficiency. Also, many would have given up without the support and information available here. So many people are going to live longer and healthier lives because of the information you have acquired and shared with your members. I don't know if there are words to describe what you have accomplished.
Our doctor told is that it blows his mind that a child has iron levels as low as little A - and far more mind blowing that he has autoimmune hemolytic anemia as well as thal major - at times he had 2 blood transfusions a week for months at a time. During these months - he was in the hospital almost daily - and he lost a lot of normalcy in his life due to constant anemia and all of the pokes - but because of the information and support we got here we survived those years as well. He was being treated with ritux, ivig - which were also iv infusions (and they caused headaches that made him scream so he was sedated much of the time) - I think he was in the hospital more than he was home during those times and all of the coping mechanisms he had acquired for transfusions and desferal were temporarily lost to him - maybe even to us. Work and education -everything was a great challenge. We've learned that if there is a physical problem you seek help for that - and when your child shuts down emotionally you seek ways to overcome that as well - helping them develop strength from the inside out. He is once again and a healthy and happy young boy.
Thanks to you little A is able to balance his antibody and his thalassemia - with his iron - his hockey team has made it to the finals and this afternoon he will be playing in the championship game.
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It's a silver medal for Little A this year :) :smiley
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Way to go A! :congrats
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Thank you very much...I really appreciate from all your experiences just how much you are able to help.
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Emby,
I'm glad we are all learning from each other :hugfriend
Sharmin
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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.
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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.
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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.
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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).
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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.
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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. :thankyou2 :thankyou :thankyou2
Dharmesh
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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. :thankyou2
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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
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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?
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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