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    #16
    Hello
    As Riluzole is the only drug available unless Tony has really adverse side effects consider sticking with it a bit longer. I had digestion problems for several weeks when I started taking it and was very tired then it stopped, so it possibly takes time to adjust. Consultants vary in how much faith the have in Riluzole.

    I have just tried Baclofen for cramps. After ten days taking one each night I could not get out of bed. I felt hung-over and lost interest in doing anything. so have stopped taking it. It has taken me a week to begin to feel normal again. However, I know some that many people do not have a problem with Baclofen. Everyone's body tolerates drugs quite differently.

    My GP has given me an alternative drug but I am wary of taking anything at all now.

    I hope Tony stabilises quite soon. I was told that Riluzole has a longterm effect and extends tife but not to expect to notice a slowing down of symptoms. MND follows its own path. What an awful illness this is. Tony is so lucky to have you to care for him, but do take care of yourself.

    Love

    Annb

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      #17
      Originally posted by Annb View Post

      I have just tried Baclofen for cramps.

      My GP has given me an alternative drug but I am wary of taking anything at all now.
      Hi Annb,

      There are much better meds than Baclofen to counteract cramps. Baclofen works well as an antispasmodic, and should be started at a minimal dose (5mg max) and gradually increased, giving the body time to adjust to the drug.

      Quinine Sulfate or Magnesium work better on stand alone cramps. May I ask what med your GP prescribed for you?

      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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        #18
        Originally posted by Devonmaid View Post
        Tony has been on riluzole for nearly 4 weeks now and to be honest he is getting weaker than before - I am even wondering if he should come off it - has anyone else had this problem?
        One of its side effects is fatigue, which would make Tony feel weaker. It does take several weeks for one's body to get used to the drug. People sometimes are told to just take 1 Riluzole tablet for the first 2 wks, then introduce the 2nd tablet.

        He should be due his first monthly blood test to check his liver function, so that will identify any problem there.

        If Tony really doesn't get on with Riluzole, it's not exactly a miracle drug, so he shouldn't beat himself up about it if he stops taking it, but give it a good try.

        Ellie x.
        ​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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          #19
          Hello Ellie

          I was put straight onto 10mg of Baclofen to be taken at night which might well why I felt so dreadful if you suggest it should only be 5mg. I had been using Ibuprofen as necessary for discomfort but my GP changed that to Naproxen night and morning. I think the combination of both together may have caused my problem. He felt Ibuprofen was not recommended although all my blood tests were stable.

          I collected my new prescription today and appear to have been given Clonazepan 0.5mg one to be taken at night. To my horror it states I must not drive. As I live alone and my car is essential so I have already decided not to take this drug. I am tired enough without dosing myself up!

          I have begun to massage my legs with Magnesium oil. I have a bio-mat detox each week together with a session of reflexology. I am considering Canabis Oil too.

          I very much enjoyed a visit to Dublin a few years ago with member of my Humanities Group. We followed the James Joyce walks. Beautiful City!

          Take care Annb

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            #20
            Thanks for the advice Ellie - blood test on Friday I believe x

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              #21
              Hi Ann,

              Clonazepam is a benzodiazepine (a tranquiliser, hence the driving warning) medicine, so will send you to sleep rather than treat your cramps.
              Your GP needs to prescribe a medicine that acts on your underlying symptoms, i.e. cramps, and not just give you meds to knock you out

              Normally Quinine Sulfate or Magnesium work well on cramps, both of which can be prescribed. Painkillers don't do much for leg cramps either. Massage with magnesium oil is helpful as a short-term fix on a smallish cramp, and taking CBD oil works for many people too.

              I am not a doctor Annb, but have had years of trials and tribulations in dealing with my ALS/MND symptoms!!

              Ellie x.
              ​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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                #22
                Thank you Ellie I really appreciated your advice. I contacted my Consultant at the NHMM and your advice was confirmed.

                I am returning to my GP and am to ask for Quinine Sulfate. I must admit my confidence is a bit shaken and I will double check everything I am prescribed in future. I am tired enough with out taking a sedative!

                Thanks again Ann X

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                  #23
                  You're welcome Annb.

                  It's a bug bear of mine that very many doctors do not treat the cause of one's pain and are happy just to mask it with sedatives or unnecessary opioids - grrr!

                  Re your fatigue: you could maybe do with increasing your calorie intake for this stage of the disease, to keep up with the extra demands on your body. Also, have you had Pulmonary Function Tests (PFTs) recently?

                  Ellie x.
                  ​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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                    #24
                    Thanks Ann - he is going to stick with it

                    Comment


                      #25
                      Hi all
                      I wonder if anyone else has experienced problems with different brands of Riluzole . I have been taking it three months without any side effects and last week was sent Glentek . I have been troubled with urinary problems since taking it and just wondering if is a coincidence. It is not like an infection, just feeling like I need to go and not been able to go when I get there. It is only in the late afternoon and evening though . the morning and through the night I have no problem.
                      I know it sounds strange , and is a long shot but it coincides with taking the different brand. I will go to the GP if it doesn't get better.

                      Best wishes
                      Love Chris
                      Last edited by raymond; 12 April 2018, 13:50.

                      Comment


                        #26
                        As you say Chris, it may be just coincidence...

                        The Glentek brand does generate criticism due to its different type of coating, but mostly oral numbness and GI issues.

                        Urinary urgency isn't one I've heard of being associated with Glentek Riluzole, maybe someone else has?

                        If it persists, yes, see your GP. If the issue can't be identified, switch brands and see if it resolves itself. If it can be attributed to Glentek brand, you can Yellow Card it.

                        We've enough to contend with without that afternoon wee dance, so I hope you get it sorted. FYI Some people do get bladder spasms with MND - it's an UMN symptom, for which I'm sure your Neuro can recommend meds.

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

                        Comment


                          #27
                          Hi Ellie
                          Thanks Ellie I made an appointment this afternoon with the GP for next week .See how it goes I can always cancel if it gets better .
                          Hope you are doing ok if you are still in the hospice on respite .
                          Love Chris

                          Comment


                            #28
                            Home tomorrow Chris Can't wait to sleep in my own bed. I even miss the kids squabbling!!
                            ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                            Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                            Comment


                              #29
                              Hi Raymond,


                              Glentek ones have a very poor coating so I would change the brand as soon as possible if melting in the mouth.

                              I have on my repeat prescription:-

                              Riluzole Teva 56 x 50mg (ONE TO BE TAKEN TWICE A DAY (NOT GLENTECH BRAND prefers teva or actavis), 56 tablet) The original Rilutec ones are good as well.

                              Glentek has a poor covering and is quite likely to melt before swallowing properly. These could be good if crushing them to put down a feeding tube but you can sometimes get a liquid Riluzole for that.

                              Ask your GP to prescribe "Teva" branded riluzole or if not "Actavis" branded ones.

                              Get him to do that straight away and stop taking the Glentek ones when the new ones come. Keep a few weeks supply when you reorder as there can be some delays.

                              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


                                #30
                                Thanks Terry
                                Must admit it has melted in my mouth a couple of times . Not sure it is the tablet that is causing me the problems though , but will discuss with GP if it carries on .
                                Love Chris

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