ALS News Today Forums Forums Living With ALS Radicava? – – What advice, comments or tips do you have?

  • romolo-pallini

    Member
    March 4, 2020 at 12:05 pm

    I am on Radicava since begin 2019  , and continue to take Riluzole. no side effects.

    hard to say if Radicava helps, progression (at the least the visible effects of ALS are not linear).

    I am an engineer, and if I can measure and correlate data, I can’t form a firm opinion.

    as a”feeling (again not data driven ) I believe it doesn’t do much. but given no side effects I may stay on it a bit longer and evaluate further.

    PS: I have no port, they insert a pic line in my arm veins , it can stay 3 days, and no secondary issues. a good , non intrusive way to start the Radicava Jurney.

    PS,PS: I wend to Korea for Stem Cell treatment 4 times, I will write about it later.

     

  • kathryn-f-kennedy

    Member
    March 4, 2020 at 12:32 pm

    Please provide update on the Stem Cell treatment when you can.  Thanks!

  • lee

    Member
    March 4, 2020 at 5:31 pm

    I have been on Radicava for over 2 years. I am now in my 30th cycle. I do 10 days of infusions, then 18 days off. That way my wife and I have 18 days to travel or whatever else we want to do. I have a port in my chest, and my wife does the infusions at home. I get the port accessed at the beginning of the 10 days, and then de-accessed at the end. We have a routine and it is no big deal. I also take Riluzole, and Acetyl-L-Carnitine at the recommendation of one of my doctors.

    My progression has been slow, and I am still quite functional. I have no idea whether Radicava and the other medications have had any effect on my progression (it is impossible for an individual to know that, which is why we do clinical trials). I have not noticed any side effects. I sometimes get dizzy, but that also happened before Radicava. I would recommend it to others.

     

  • romolo-pallini

    Member
    March 5, 2020 at 2:24 pm

    HI,

    I have been to Korea 4 Times in the last 12 months.

    I did not notice any change on the pace of disease progression.

    in Seoul a meet an American doctor with ALS, he went 3 times with good visible results.

    so……hard to say if treatment helps or not.

    cost is about 40K each injection + travel.

    procedure is not to painful , but annoying as you have to stay flat 6h after each procedure.

    1st trip bone marrow extraction . after 6 hours flat.

    2nd trip.: day one spinal fluid extraction. after 6 hours flat.

    day 2 Stem Cells ( mixed with spinal fluid) injections . again 6 hours flat. this procedure may result in Flu like symptoms.

    No sure I will do one more injection as I don’t see good results. but we all react to treatments in different ways.

    good luck, and contact me for more details

  • jonathan-l-maddock

    Member
    March 5, 2020 at 5:52 pm

    I started Radicava September 2019, initially with a PICC line, and a chest port since December. I prefer the chest port. It interferes less with life in general, and is easier for showering.

    I do my own infusions at home. I use a local hospital to access the port, and I de-access it myself.

    Radicava does seem to improve talking/walking slightly. I’m taking it for the long haul and slowing of progression. That’s hard to assess, but my insurance is paying for it, so bring it on. Anything to give the miracle discovery more time to happen!

    Jon

  • kathryn-f-kennedy

    Member
    March 6, 2020 at 7:27 pm

    We are all different but I like my PICC line better!  Had a Mediport previously.  I too will continue with Radicava.   Fortunately it’s on my Medicare Formulary!

  • cyndi-zach

    Member
    March 9, 2020 at 11:23 am

    I will be starting Radicava in oral form this month as part of an efficacy and tolerance study through my ALS clinic.  The drug will be new for me.  Same schedule as the iv form.  I’ll keep you updated.

  • mario

    Member
    March 9, 2020 at 2:28 pm

    Are there possibilities in Italy for therapy with Radicava? in which country is therapy possible? In Italy doctors only give Riluzole. thank you all

Page 2 of 2

Log in to reply.