L1/Kelfer - an update

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Offline Poirot

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L1/Kelfer - an update
« on: June 27, 2008, 02:19:55 PM »
For all those on L1/Kelfer, here is a message from me - stick to it, and ensure that you are taking the proper dosage by weight. It works. In my opinion, better than desferal.

I recently found out that my ferritin level is now below 150 ..... and, this is verified by multiple tests at different centres. Equally importantly, there is one more guy at my transfusion centre whose ferritin level has also now dropped below 250.

I have been on Kelfer for more than 20 years now.

Thank you, Dr Hamid and Cipla ..... you made a difference.

Poirot

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Offline Andy Battaglia

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Re: L1/Kelfer - an update
« Reply #1 on: June 27, 2008, 02:25:21 PM »
Poirot,

It's very good to hear from you and great news about your ferritin. If you have any advice on how to deal with the joint pain some patients experience, please let us know. Also, I had a patient tell me this week that he had to cut his kelfer dosage to less than half because of a constant "vomity" feeling. Any suggestions on how to deal with this?

I will be messaging you about another matter concerning a patient in India.
Andy

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Offline Poirot

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Re: L1/Kelfer - an update
« Reply #2 on: June 27, 2008, 04:45:32 PM »
Thanks, Andy.

RE: Pain in knees - Based upon my experience, there are two things that you can do. Apparently kelfer causes fluid to collect in the knee joint in some cases. The first thing to do is to reduce the dosage. Drop the dosage from the normal 50-75mg/kg of body weight to 10-25mg/kg. If this takes care of the problem, great. Slowly increase the dosage, as the body gets used to kelfer. In my case, we had taken one additional step - I had gone to an orthopaedic specialist who inserted a tube into the knees and drained off the fluid that had collected there. Once the original fluid was gone, and the dosage had been reduced, the pain went away. It did not come back after that even as I increased the dosage.

RE: Nausea - try reducing the dosage, as above, and see if the nausea goes away. If it does, then start increasing the dosage over a period of time. Also experiment with taking it at different times - before meals, after meals, with a gap, at the morning and before going to sleep, etc

Hope that helps. Pls feel free to ask more questions.

Poirot

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Offline nice friend

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Re: L1/Kelfer - an update
« Reply #3 on: June 27, 2008, 08:51:33 PM »
Hi poirot :
its nice to hear that ur iron levels r in completely in ur controle .. i m also on ferriprox ( deferiprone ) (which is ths another name of kelfer) i hope mine will b in controle too as ur ... ..
best regards take care of ur self .. Umair
Sometimes , God breaks our spirit to save our soul.
Sometimes , He breaks our heart to make us whole.
Sometimes , He sends us pain so we can be stronger.
Sometimes , He sends us failure so we can be humble.
Sometimes , He sends us illness so we can take better care of our selves.
Sometimes , He takes everything away from us so we can learn the value of everything we have.

===========
Umair

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Offline §ãJ¡Ð ساجد

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Re: L1/Kelfer - an update
« Reply #4 on: June 28, 2008, 06:14:26 AM »
Hi Poirot,

Welcome back! Good to know that you're doing great.

Keep posting.
اَسّلامُ علیکم Peace be Upon you
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Offline Poirot

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Re: L1/Kelfer - an update
« Reply #5 on: June 28, 2008, 11:21:18 AM »
Nice friend:

Thanks. I am sure your iron will drop with L1 as well. What I have figured out is that there is an inflection point with L1 and the iron previously stored in your body and the iron entering it through blood transfusions. Once you cross the inflection point, L1 is surprisingly good at removing body iron stores. One additional bit of info - you may want to combine 2D echo and LFT tests along with your ferritin tests on a semi-annual basis. Between the three tests, you get a fairly good picture of your overall health.

Sajid:

Thanks for the note. Trust you are doing well, as well.

Poirot

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Offline nice friend

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Re: L1/Kelfer - an update
« Reply #6 on: June 28, 2008, 12:01:10 PM »
Hi Poirot :
thanx for sugesstion i will definitely try my best to do ... thanx again
Sometimes , God breaks our spirit to save our soul.
Sometimes , He breaks our heart to make us whole.
Sometimes , He sends us pain so we can be stronger.
Sometimes , He sends us failure so we can be humble.
Sometimes , He sends us illness so we can take better care of our selves.
Sometimes , He takes everything away from us so we can learn the value of everything we have.

===========
Umair

Re: L1/Kelfer - an update
« Reply #7 on: July 09, 2008, 02:33:18 AM »
Great news about your ferritin levels. 
Does anyone know of a place in India that would ship Kelfer to someone in the U.S?
I know it's not FDA approved, but it does seem to work.
Any leads would be greatly appreciated.

thanks,
Christina

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Offline Andy Battaglia

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Re: L1/Kelfer - an update
« Reply #8 on: July 09, 2008, 02:46:29 AM »
The only way to get kelfer in India is to have a prescription for it in India. It is available in the US to patients who cannot tolerate desferal (that limits its use greatly in terms of combination chelation).

http://www.thalassemia.org/sections.php?sec=2&tab=10&sub=192

Quote
Ferriprox (Deferiprone, L1)

Currently, patients in the U.S. have the option of two FDA-approved therapies for iron chelation, Desferal or Exjade. A third option, Ferriprox (a.k.a. deferiprone or L1), has not yet been submitted to the FDA for review. However, some physicians may feel that certain patients would benefit from immediate access to this therapeutic option, especially those patients with issues related to cardiac iron. In these cases, physicians may be able to obtain Ferriprox through a Treatment Use Program.

A Treatment Use Program allows patients to receive promising experimental drugs before they have been approved for sale in the U.S. The FDA works to ensure that Treatment Use Programs provide high standards for the assurance of safety and protection of patients in these programs.

ApoPharma, the manufacturer of Ferriprox, has established a Treatment Use Program to provide Ferriprox free of charge to physicians who have patients who are unable to take deferoxamine. To gain access to Ferriprox through this program, the physician and patient first must discuss the benefits and risks of Ferriprox. If both feel that Ferriprox may be of benefit, the physician must contact ApoPharma in writing to request treatment use of Ferriprox. ApoPharma will request information on patient medical history and current clinical status, after which ApoPharma will make a preliminary determination as to whether the patient meets the criteria for inclusion in the Treatment Use Program. If so, the physician must submit a single patient Investigational New Drug Application (IND) to the FDA. Such applications are generally answered within a month.

Patients and physicians should be aware of this option so that they can discuss what therapy is most appropriate. CAF urges patients to always remain compliant with whatever therapy is determined the most appropriate. It really is a matter of life and death.
Andy

All we are saying is give thals a chance.

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Offline muna nori

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Re: L1/Kelfer - an update
« Reply #9 on: July 10, 2008, 09:34:24 AM »
Thanks, Andy.
mks. sir,
please advise : should i do the ferritine test while i am fasting? this the first
                      should i slube the kelfar with juse or water ?
mks again
mona nori
new member
RE: Pain in knees - Based upon my experience, there are two things that you can do. Apparently kelfer causes fluid to collect in the knee joint in some cases. The first thing to do is to reduce the dosage. Drop the dosage from the normal 50-75mg/kg of body weight to 10-25mg/kg. If this takes care of the problem, great. Slowly increase the dosage, as the body gets used to kelfer. In my case, we had taken one additional step - I had gone to an orthopaedic specialist who inserted a tube into the knees and drained off the fluid that had collected there. Once the original fluid was gone, and the dosage had been reduced, the pain went away. It did not come back after that even as I increased the dosage.

RE: Nausea - try reducing the dosage, as above, and see if the nausea goes away. If it does, then start increasing the dosage over a period of time. Also experiment with taking it at different times - before meals, after meals, with a gap, at the morning and before going to sleep, etc

Hope that helps. Pls feel free to ask more questions.

Poirot
monmon

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Offline muna nori

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Re: L1/Kelfer - an update
« Reply #10 on: July 10, 2008, 10:22:37 AM »
mks. sirs,
please advise :
should i do the ferritine test while i am fasting? this the first?
                      should i slube the kelfar with juce or water ?
mks again
mona nori
new member
monmon

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Offline Poirot

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Re: L1/Kelfer - an update
« Reply #11 on: July 12, 2008, 11:09:47 AM »
What is mks?

The first thing you should keep in mind is that the serum ferritin test is a very unstable test - the test results vary depending on the age of the serum used for testing, the quality of the lab in which it is tested, whether you have even a slight infection while taking the test or not. So, the best thing to do is to use Ferritin as guiding factor, not as an absolute marker. You should get the ferritin test every six months, and monitor the direction of the ferritin levels - that is as important, if not more important, than the actual levels of ferritin measured. However, if the count is more than 5,000, then aggressive chelation is indicated.

RE: fasting - I am not sure whether this makes a difference or not, and have never had any lab ask me if I was fasting or not. So, I guess it does not make a difference.

RE: You can take kelfer with whatever you feel comfortable with - I have taken it with both milk and water. Since, it is swallowed and goes directly into the GI tract, it does not really matter.

Poirot


mks. sirs,
please advise :
should i do the ferritine test while i am fasting? this the first?
                      should i slube the kelfar with juce or water ?
mks again
mona nori
new member


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Offline muna nori

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Re: L1/Kelfer - an update
« Reply #12 on: July 14, 2008, 07:45:45 AM »
Hi Poirot :
thanx for sugesstion
re: mks : meny thanks
good day sir
monmon

Re: L1/Kelfer - an update
« Reply #13 on: July 17, 2008, 09:07:34 AM »
For all those on L1/Kelfer, here is a message from me - stick to it, and ensure that you are taking the proper dosage by weight. It works. In my opinion, better than desferal.

I recently found out that my ferritin level is now below 150 ..... and, this is verified by multiple tests at different centres. Equally importantly, there is one more guy at my transfusion centre whose ferritin level has also now dropped below 250.

I have been on Kelfer for more than 20 years now.

Thank you, Dr Hamid and Cipla ..... you made a difference.

Poirot

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Offline Poirot

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Re: L1/Kelfer - an update
« Reply #14 on: July 17, 2008, 10:31:08 AM »
Samer,

Did you have a question for me?

 

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