L1/Kelfer - an update

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.

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

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

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