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    Edaravone

    Hi all, as some on here know I am currently receiving Generic Edaravone, however my brother has contacted his MP Kate Hoey on its availability in the UK. If anyone follows politics as I do they will know Ms. Hoey is an excellent parliamentarian who in turn contacted Matt Hancock the Minister for Health and it could become available in Europe by the end of the year if approved by the CHMP ( Committee for Medicinal Products for Human Use ).
    I hope I’m not telling Granny how to suck eggs here just thought I’d let u know I do more than sit in the pool and drink 🍷 all day.
    Love Jerry

    #2
    Thanks for letting us know Jerry.

    Ms Hoey will need all her high jumping skills to clear that bar. But fingers crossed!

    I guess the problem might be cost and unknown method of action. Though presumably reducing oxidative stress is a current hypothesis.

    Nothing wrong with sitting by the pool!

    Doug

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      #3
      Hi Jerry,

      Thanks for the update, and many thanks to your brother for contacting Kate Hoey about this issue.

      I don't know if Edaravone will prove cost-effective enough to be funded by the NHS, but Kate is a star for pro-actively supporting MND patients.

      It's windy and rainy in many parts of the UK today, and so I am enjoying my glass of wine indoors, relaxing in my comfy chair by the fire. It's good to hear that you enjoy a glass or two relaxing by the pool!

      Cheers,
      Kayleigh x

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        #4
        I agree with you Kayleigh re questionable NHS funding for Edaravone if it ever were to be approved, likewise with my health service...

        An oral version of Edaravone is currently being prepared for Phase 2/3 of clinical trials (but I've no idea when) As it's a tablet and has a greater bioavailability of the drug than its infsion counterpart, it should be a lot cheaper than it is in its current form.

        However, the tablet form is likely at least a few years away...

        Love Ellie.
        ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
        Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

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          #5
          Hi all, yes I see your point Ellie it is expensive and it’s unlikely the NHS would prescribe it for too many of us. I’m currently awaiting the results from an independent laboratory on the generic version. Will update when I know.
          Love Jerry

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            #6
            It sounds like the only option offered to us by the NHS could remain as Riluzole, for quite a while yet.

            Its always interesting to read about medical research and progress being made with drugs trials etc - but the way things are, I think I will concentrate most of my energy on trying to make the most of every day and having as much quality time as possible with my family and friends.

            Love and hugs to everyone in this forum family,
            Kayleigh x
            Last edited by Kayleigh; 8 March 2019, 01:59.

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              #7
              Hi Kayleigh, what a great outlook you have and it’s shared by most on here xxx

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                #8
                Hi Jerry,

                It's not always easy to be positive about things ... but knowing that you and others in this forum family are coping with similar challenges to mine, due to this diagnosis, gives me the encouragement and strength to make the most of every day.

                It helps to know that I'm not the only person in the World facing the daily challenges that life with MND confronts me with.

                My family and friends don't have the same understanding of what I am going through, as you and others with MND on this forum have.

                I always like to hear from my forum brother in Thailand - you always cheer me up and I love those updates you post about that wonderfully enthusiastic American guy who is doing all he can to find an effective treatment for all of us. I'd be lost without your support and everyone else's support in this forum family! - please keep posting those positive vibes!

                Although times are not easy, I try to make the best of things ... one day at a time.

                Take things easy Jerry, and try to stay as positive about things as you can xx Not easy I know, but we've all got to try and stay as strong as possible for ourselves, our loved ones, and each other in this forum family. I hope you are looking after yourself xx

                Love and hugs to you and your wife,
                Kayleigh

                P.S How's the weather is Thailand? - it's got to be much better than it is in the UK at the moment! Hopefully you are still managing to get plenty of time to relax at the beach, and partake in a glass or two of your favourite alcoholic grape juice! Take care Jerry (and please try to keep in touch on the forum regularly, if you can! - or 'clucky mother hen' will worry about you, if you don't post for a while!)
                Last edited by Kayleigh; 8 March 2019, 19:31.

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                  #9
                  Does anyone know of places in the UK (ideally in the West Midlands) where edaravone can be administered? The meds can be imported to the Uk but I am finding it somewhat difficult to find a nurse / practitioner to administer it.

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                    #10
                    Hi Vjayp and welcome to the forum.

                    As Edavarone is not licensed in the UK medical professionals will be reluctant to administer it. Whilst it was approved by the FDA the experts in the UK and Europe are sceptical of it’s value as a treatment for MND.
                    I’m going to do this even if it kills me!

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                      #11
                      Hi Kayleigh, sorry for the late reply, I’ve been on and off the sit but hadn’t checked the Edaravone link. I’m not doing brilliantly tbh. Life as I’ve said on here if you’re not sick would be fine but it’s getting evermore apparent I’m going struggle. My wife is doing all she can administering the Edaravone and general care but the lack of support here is the showstopper. I cannot walk far aided at all now so I’ve decided to head home next month. A traumatic few weeks to be sure.
                      How are things with you ? PM me if u like
                      Best wishes Jerry

                      Comment


                        #12
                        Hi Jerry,

                        Sorry for butting in...

                        I am really sorry to hear you're struggling and have to head back to the UK. Will your wife come too?

                        Big hug,

                        Love Ellie.
                        ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                        Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                        Comment


                          #13
                          Hi Ellie, my wife wants me to stay here but ( I am bricking it and she is very capable but if anything happened to her I have friends but nobody I would want to put in any position,) families etc. plus doesn't like the uk very much so she will visit. The Thai government are getting very difficult with retirement visas but support is the main thing. My brother will look after me as he works from home my sister and Mum are also not far away. For me to come back to the uk is the beginning of the end and a cop out on my behalf. How do you say Goodbye to your five year old granddaughter ?

                          Thank you for your concern xxx Jerry

                          Comment


                            #14
                            Hello again to everyone;

                            I'd like to point out that, while it is not a cure, the experimental drug RCH4 is described by the people using ]it as having a "Major" effect on the progression of their ALS. The RCH4 charity's website provides the attached chart which shows the perceived effectiveness of RCH4 as compared to Riluzole and Edaravone.

                            These percentages were obtained from patient reports on the website "Patients Like Me".

                            The bulk of RCH4 reports in the "Major efficacy" column should give a good indication as to why RCH4 users (such as myself) advocate the stuff as strongly as we do.

                            best to all, jim s


                            [ATTACH=CONFIG]991[/ATTACH
                            Attached Files

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                              #15
                              Hi Jim aka oldnewyorker.

                              Your posts about RCH4 may be giving some of our newer members false hope. The drug developer behind this is no longer accepting new patients for the charitable issue of the treatment.

                              Best wishes,
                              Barry
                              I’m going to do this even if it kills me!

                              Comment

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