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Thread: My experiences with RADICAVA

  1. #41
    Forum Member Lynne K's Avatar
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    Thanks. Very interesting read and may be explain what's been going on genetically in my family. My paternal grandmother and aunt had dementia and two of my 4 children have schizophrenia. The article points to a link between these illnesses and ALS. I hope that they get moving on testing the target drug and make it available in my lifetime. I wonder if my two children who are already taking anti-sychotic drugs may be protected from ALS? Lynne

  2. #42
    Forum Member Raj's Avatar
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    Lynne,
    I'm so sorry to hear that your children are afflicted with Schizophrenia.
    In most people with familial ALS, their children have a 50-50 chance of developing the disease. ALS risk increases with age, and is most common between the ages of 40 and 60. ... Raj

    I see a world on the edge of a blade. Without balance, it will fall.

  3. #43
    Forum Member Lynne K's Avatar
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    Thanks Raj. My children are grown up but still need my input from time to time. I was 63 when diagnosed last autumn. I've just had a birthday so I'm 64. How does the song go.... Lynne

  4. #44
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    Hi Raj, unfortunately the Thai customs have refused to release my shipment. Possibly my fault as I ordered 3 months supply but as they explained to my wife its not approved in Thailand. Currently on an FMT program so will reassess at the end of the week.
    Regards Jerry

  5. #45
    Forum Member Raj's Avatar
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    Hi jerry,
    There are country-specific regulations in place for every type of drug, both in the exporting and the importing countries.
    many on-line sites gave the appearance of operating from Thailand as people believed they could purchase drugs that were unobtainable in their home country without prescription.
    The issue has to do with quantity. By law an import/export license is required to bring in/out more than a 30 day supply for personal use (and any quantity with intent to sell). I don't know much about Thai law of customs. But in India, there is no any such restrictions of exporting prescription medication to Europe and US. And of course for restricted or controlled drugs, there are procedures in quantity and types of medication. However, I hope that you will be able to get the drug as early as possible. Feel free to ask any questions in this regard. And if you or anyone from the forum need any assistance from me personally, I am here for your service. please let me know...Raj

    I see a world on the edge of a blade. Without balance, it will fall.

  6. #46
    Forum Member Raj's Avatar
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    I see a world on the edge of a blade. Without balance, it will fall.

  7. #47
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    Quote Originally Posted by Raj View Post
    Thanks for the wishes, Barry. I don't know why it is not available in UK. FDA approved in may 2017. And regarding the cost, yes, in India, medicine/medical services are cheap, compare to UK and USA. if you or any other members of this forum, wish for a treatment in India, welcome, stay with me. I have a huge house with modern amenities here. I live with my wife in first floor. So welcome all ALS friends.
    Hi Raj, does the dosage continue indefinitely ie. 10 out of 14 days then 14 rest till EOL. I had my Edaravone confiscated at customs by the Thailand Food & Drug Administration and have been mulling over what to do next. Had my PICC fitted yesterday without anesthetic as they were afraid I wouldn't come round due to the MND !! Blinking sore today.
    Regards Jerry

  8. #48
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    Thanks I'm going to order the months supply. My own fault I ordered 3 months.Jerry

  9. #49
    Forum Member Raj's Avatar
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    Hi Jerry,
    edaravone require a*central venous catheter, like a PICC line or port, for long-term treatment ie. More than 15days. But for a short period of time, say 5 days, a cannula is a better choice. You can use two cannulas for a 10 days infusion in each month. My nurse used cannulas for my infusions.
    Now regarding the usage. A 13 months treatment is considered as standard to know any delay in progression of the disease. But Your doctor will determine how long to treat you with edaravone. My neurologist advised for 12 months infusions. Thereafter he will see the progress and will decide further course of action. I will post it on a regular basis. I can send you some pictures and videos of my life with MND and the infusions of EDARAVONE last six months on WhatsApp +919744866841( if the fourm permits. I don't know)....Raj
    https://www.google.co.in/amp/s/m.wik...annula%3famp=1

    I see a world on the edge of a blade. Without balance, it will fall.

  10. #50
    Forum Member Ellie's Avatar
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    Hi Jerry,

    I am sorry your return to the UK didn't work out - that must have been very frustrating for you I'm sure in many ways it's good to be back in Thailand.

    Good luck with the Edaravone - if you haven't seen this thread from the US Forum, it's probably worth reading: http://www.alsforums.com/forum/gener...ving-radi.html

    Love Ellie.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

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