Announcement

Collapse
No announcement yet.

Riluzole

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

    #31
    Is everybody bitten by the same bug, put Riluzole down at every chance. I have been taking since my diagnosis last October, twice a day with regular blood tests (LFT's). I take a multitude of other things alongside as I have long term Prostate Cancer, plus the mild anti-depressant for the moods/emeotions. I drink what I like when I like, it's horses for courses, remember we are all different before MND and even more with MND. Don't be dictated or advised by the long term warriors, nothing against them. You are the one in question taking the drug or whatever, if it fits great, if it doesn't, don't do it, try something different. I have come to realise there are some great people with MND, great socially, put some like there soap box and preach what everyone should be doing. Remember we are all different, individuals, positivity and humour a day at a time.

    Comment


      #32
      I have been given a different kind of Riluzole, made by Sun Pharma MA Holder Netherlands.

      Will report my findings soon.

      Love Terry
      TB once said that "The forum is still the best source for friendship and information."

      It will only remain so if new people post and keep us updated on things that work or don't work and tips.

      Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.

      Comment


        #33
        Hi Terry,
        I have just collected my first pack of Riluzole and they are the same type - Sun Pharma.
        How are you getting on with them?
        I can't start taking them until 12th Sep. I will take them for 3 months as preamble to the Mirocals.
        My chest is just beginning to feel rather tight and my cough is rubbish now, Sounds like a dog toy being squeaked!
        Marigold

        Comment


          #34
          Hi Marigold;

          They seem OK and you have a fair bit of time to swallow them. 12th Sep is a little wait but it's good to finish the Mirocals trial first.

          Some maybe a quarter of the people have trouble starting on Riluzole and start by taking one a day for 2 weeks. I am one of the 3/4's that didn't have any trouble.

          Be careful of your chest and get it checked out if it doesn't improve very soon. My cough tends to be a quite violent affair which is good for me and not others.

          Love Terry
          TB once said that "The forum is still the best source for friendship and information."

          It will only remain so if new people post and keep us updated on things that work or don't work and tips.

          Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.

          Comment


            #35
            Thanks Terry for the advice.
            I don’t get the Mirocals until 3 months of riluzole.
            And I have to have all the flippin tests done again on 12th including the LP. Grrrrr!
            Will keep you posted!
            Marigold

            Comment


              #36
              Hi Marigold;

              Please explain why you have to wait to take Riluzole then?

              Sounds like people have got their wires crossed to me.

              Love Terry
              TB once said that "The forum is still the best source for friendship and information."

              It will only remain so if new people post and keep us updated on things that work or don't work and tips.

              Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.

              Comment


                #37
                Well you can only be eligible for the Mirocals trial if you have never started on riluzole. Then you have to do a bank of baseline tests and begin the riluzole then. After 3 months to see how you tolerate it you then begin the trial injections.
                I think it’s a way of setting the control for the science!
                Marigold

                Comment


                  #38
                  Oh, I see;

                  I guess it's hard to get the timing all correct. I am surprised that they got enough people to do it. Fingers crossed that it all works.

                  Love Terry
                  TB once said that "The forum is still the best source for friendship and information."

                  It will only remain so if new people post and keep us updated on things that work or don't work and tips.

                  Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.

                  Comment


                    #39
                    I was told I am the 14th person from Sheffield. So statistically 7 of us will be having a placebo!!
                    Will let you know how it goes !

                    Comment


                      #40
                      Oral suspension of riluzole approved by FDA

                      ITF Pharma has received marketing authorisation for the use of Tiglutik, a liquid form of riluzole, by people with MND in the USA. This form of riluzole is already available in the UK under the name of Teglutik, provided by Martindale Pharma, making this treatment more accessible to people with swallowing difficulties.
                      TB once said that "The forum is still the best source for friendship and information."

                      It will only remain so if new people post and keep us updated on things that work or don't work and tips.

                      Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.

                      Comment


                        #41
                        Hi Terry,

                        Some Forum members have had a very hard time getting liquid Riluzole prescribed in the U.K. as it is SO much more expensive than in tablet form.

                        So, yes it's available, but some people have to jump through hoops to get it

                        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


                          #42
                          Hi Chimp;

                          Not sure of the costs involved and some people do get it offered and some, as you say have to jump through hoops.

                          At least people know what it's name is and the maker, some doctors don't seem to know it exists.

                          Love TC
                          TB once said that "The forum is still the best source for friendship and information."

                          It will only remain so if new people post and keep us updated on things that work or don't work and tips.

                          Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.

                          Comment


                            #43
                            Yes Ellie, you're right,

                            It would appear that the liquid costs £100 for the equivalent of 30 tablets and most brands of riluzole cost £14.80 for 56.

                            Very strong insentive not to supply the liquid form.

                            My figures could be wrong.

                            Love Terry
                            TB once said that "The forum is still the best source for friendship and information."

                            It will only remain so if new people post and keep us updated on things that work or don't work and tips.

                            Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.

                            Comment


                              #44
                              Yep Terry, it over £100 more expensive, per month, for the liquid form of Riluzole - it's on patent. x
                              ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                              Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                              Comment


                                #45
                                Hi Everyone,
                                I am now taking my riluzole and have experienced no side affects so far ( a month in),
                                I was not given much guidance on when to take it other than every 12 hours to suit me.
                                My question is, should I be taking it on an empty stomach?
                                I haven't been! I have read this somewhere but am not sure if this is to minimise side affects or to maximise efficacy?
                                Can anyone advise and should i change routine?
                                Marigold

                                Comment

                                Working...
                                X