Announcement

Collapse
No announcement yet.

Riluzole

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

    #16
    Originally posted by Lynne K View Post
    They’ll go down my PEG tube in two weeks time
    There is no 'Do Not Crush' on Riluzole tablets so, if there's a delay in obtaining Tiglutik, you can happily crush the pills. I have checked this with various Pharmacists over the years, as well as with my Neurologist.

    Seeing as taking meds through a tube will be new to you, it's best to give a decent flush of water after meds - liquid suspensions can be sticky.
    xx
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
    Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

    Comment


      #17
      Lynne K I so get you re neurologist replying. Good luck with g p x
      Diagnosed May 2021 bulbar onset als.

      Comment


        #18
        shelly21 thanks xx
        ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my balance.

        I'm staying positive and taking each day as it comes.

        Comment


          #19
          bridoc2904 sorry about your wife. It must still be extremely raw for you. My husband has been taking Riluzole since diagnosis Oct 2017. He is tolerating it well. Has three monthly blood tests. Relatively stable foe three years but raising its ugly head last eighteen months. Thinking of you xx

          Comment


            #20
            Reply from my neurologist. She said that my GP ought to prescribe the liquid Riluzole but if not then she will, Lynne
            ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my balance.

            I'm staying positive and taking each day as it comes.

            Comment


              #21
              Thats great news lynne. X
              Diagnosed May 2021 bulbar onset als.

              Comment


                #22
                The only issue I have had with Riluzole is that it gives me copious wind. I hope that isn’t too much information 😳
                Diagnosed 18th May 2021 with sporadic ALS. Limb onset. Terrified of not being able to breathe easily.

                Comment


                  #23
                  Hope I found that riluzole made me feel really ill, so decided I don’t want to feel like that for the rest of my days! So stopped it and returned to feeling a lot better how I was before. I suppose for me I wouldn’t have minded more life if the quality was good enough, but would have stopped it anyway if that changed. But as everyone says, individual choice xxx
                  Diagnosed July 2020, ALS bulbar onset. PEG and ventilator (mainly at night), and pretty poor speech, but legs still about functioning!

                  Comment


                    #24
                    Rosemary6NT I definitely don't want that side effect!
                    Bulbar onset diagnosed Nov 21. No speech but limbs ok so far.

                    Comment


                      #25
                      I stopped taking it as it makes me nauseous. Tried on two occasions just to be sure.
                      Started limping 2017, diagnosed August 2021. Wheelchair user and reduced shoulder function. Trying to be positive 😺.

                      Comment


                        #26
                        Tabbycat If you're disappointed in having to stop Riluzole, you could try taking one a day, with a few dry (low fat) crackers - it's the fat which reduces its absorption, rather than 'food'.

                        If it works, you can then try two a day, if it doesn't or you're not bothered, no harm done. xx
                        ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                        Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                        Comment


                          #27
                          Ellie Thank you, that's very helpful. I tried to find information as to whether the 'taking on an empty stomach' was to prevent nausea or if it was related to absorption but had been unsuccessful.
                          Started limping 2017, diagnosed August 2021. Wheelchair user and reduced shoulder function. Trying to be positive 😺.

                          Comment


                            #28
                            My husband was keen to try Riluzole - he wanted as much life as possible - but he found it made him tired and nauseous, and because he was struggling to work anyway he soon stopped it. I had hoped that he would re-start it later when he was no longer working, but he was keen to be on the MND Smart trial and his energy levels were already very low so he felt that getting his body used to Riluzole as well was too much.

                            Early on in the disease I remember thinking that three months wasn't much. I was wrong - every day is precious. But hubby didn't feel he could tolerate it and the pay-off would not have been worth it for him. He achieved an amazing amount in his short time with this illness and was nearly always cheerful and hopeful and made the most of each day.
                            Husband died 14 months after MND diagnosis.

                            Comment


                              #29
                              Originally posted by Ellie View Post
                              [USER="26919"] it's the fat which reduces its absorption, rather than 'food'. xx
                              Oh, I didn’t know that. I take mine twice a day with moderately fatty meals …🤔

                              Diagnosed 18th May 2021 with sporadic ALS. Limb onset. Terrified of not being able to breathe easily.

                              Comment


                                #30
                                Rosemary6NT To give you the reason why it's best to take Riluzole on an empty stomach, "high fat meals" can reduce the window of time for absorption by 20%, and can decrease the maximum amount of, and extent of, drug absorption by a whopping 45%.

                                What constitutes a "high fat meal" isn't defined, but we should take from that data that it's best to take Riluzole on an empty stomach where possible or, if eating something light prevents nausea, keep food as low fat as possible. xx
                                ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                                Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                                Comment

                                Working...
                                X