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    #16
    Hi TIANDB,
    No problem getting Ropinirole and starting low. Got one month at 0.25 and I am to get in touch in two weeks. How can we tell if this is any good? or whether it is interacting with any other drugs currently being taken?
    Fru x

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      #17
      Just letting you know that 0.25 is well tolerated and the dose has now been increased to 0.5 from today. Nothing spectacular to report apart from that I have asked someone I know to check out the Japanese professor who wrote the paper. I'll post the info on ropinirole later.
      Fru xx

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        #18
        Hi Fru,

        I hope that it helps in anyway. All the best.

        Love Terry

        PS, apart from growing horns that I saw at the Cambridge Christmas party
        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.

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          #19
          Great he is tolerating it so far Fru, hope it continues as the dose increases xx
          ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
          Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

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            #20
            Thank you for your support. As promised earlier here is some further reading for anyone interested to follow on from the first post on this thread xx

            https://www.webmd.com/drugs/2/drug-4...e-oral/details
            https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2542495/
            https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2685238/
            https://clinicaltrials.gov/ct2/show/NCT00329602

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              #21
              Hi everyone
              This is what my friend says...

              I have taken a brief look at their publication (attached). I think they did a good work and it has been published in a prestigious journal in our field.

              The only problem I have is that it is too early to make those claims. This is because, in vitro experiments in the laboratory do not always translate when performed in vivo (in living systems).

              But their paper is an important piece and they may proceed to perform some clinical trials which will give a laudable outcome.

              Caution!! their experiment is a bit complicated for non-scientist!!!


              So, this is where we are and I am working on how to put the attachment on here.

              Best wishes Fru

              Comment


                #22
                Okay, it's a very long and complicated looking paper and very much over my head. If anyone would like to see it please pm with email.
                Best wishes
                Fru x

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                  #23
                  Here's my report on Ropinirole for 'restless legs'
                  Ed tolerated 0.25mg with nothing to report, then 0.50mg and that was okay for about 3 weeks with still nothing to report, then the chills set in and asthma seemed to be worse. Stopped all meds for a couple of weeks and now fine. He seemed happy on the Ropinirole and talked much more than usual and had more interest in things in general but it didn't help his legs.
                  The chills could have been a virus and Ed does use an inhaler and sometimes a nebulizer but it was agreed that Ed should stop taking the tablets if anything was different or if he seemed worse.
                  He gave it a try!

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                    #24
                    Thanks Fru and Ed;

                    Difficult to say about if it's the meds but you couldn't risk continuing especially if his breathing is affected.

                    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


                      #25
                      Yes Terry
                      Asthma like side effects were on the list. This was a problem but it is winter and everyone with MND is different. It's hard to tell but we stuck to our agreement. The tablets didn't seem to be helping.
                      Love Fru xx

                      Comment


                        #26
                        Sorry it didn't work out for Ed (& you!)

                        Does he have RLS or was he trying Ropinirole for ALS in general?? Do you think his form improved because he was doing something, so to speak?

                        I ask because I have RLS and take Pramipexole, which I find works very well.

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

                        Comment


                          #27
                          Hi Ellie,
                          Well, to be honest, nothing is improving at the moment. Ed's hands arms and upper body are affected and he is becoming weaker. We are going for respiratory check up again soon. Legs are absolutely solid. Trying to keep feet warm. Off food. OT coming next week. Bed and mattress arriving tomorrow and now at the end of using Molift raiser so new one coming shortly. This should hopefully help my back. Will talk to GP about something to help Ed for stiff legs. Any advice gratefully received
                          Love Fru XX

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                            #28
                            Sorry Ed's progression is continuing apace Fru - it's a v difficult stage he's in at the moment.

                            Any idea what's replacing the Molift? From afar, I hope the OT is considering a sit-to-stand hoist, rather than a full-sling hoist, just because Ed's legs are strong, albeit due to spasticity. It doesn't really matter that his arms are weak as the sling supports his torso, but he needs to be able to sit up.

                            It's this "functional spasticity" which allows me to still do standing transfers. I take Baclofen, the go-to antispasmodic med, but the trick is to land on the right dose and achieve a balance between function and comfort.

                            I add Tizanidine, another antispasmodic, at bedtime as my spasticity is worse in bed because I don't move.

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

                            Comment


                              #29
                              Fru, I forgot to mention that Heat Holders socks are very good for keeping feet warm. They are quite thick but are 4.5 tog.

                              I also like the men's Heatgen thermal socks from M&S. I find my feet fare better when my body is warm and I wear M&S women's Heatgen thermal long sleeved T-shirts everyday now as a base layer. They do men's too (and long johns, which I haven't tried!) They aren't sweaty like some thermals are and are thin.

                              Any idea why Ed's not eating much - fatigue, constipation, sheer effort?

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

                              Comment


                                #30
                                Hi Ellie,
                                Yes, things have been a bit difficult! Ed is just exhausted and low but this goes in phases. The Molift sit to stand, is fine for the time being I think but Ed has to psych himself up for each transfer and there are several each day. Then he has a rest. He is worn out with sheer effort. I look on it as functional spacicity too. He is frightened of his knees giving way and I assure him all the time that he won't fall during a transfer. Some days whatever I say doesn't do much good.
                                Thanks Ellie, Ed is taking the Baclofen again. He sopped it before because he was hallucinating. I think he should stick with it for a while as it is the GP's preferred choice. We will see how it goes. Ed doesn't move in bed either. I have been getting up to turn him.
                                I think Ed gets cold because he doesn't move around much. I will look up the socks, thanks.
                                This afternoon he had his first proper rest for ages. The bed arrived this morning! Well its a bit crowded in the room now as I have a put u up in there too. Never mind.
                                Ed just doesn't feel like eating. Swallow is fine. He is supposed to have two shakes a day. Sometimes he has one. He is having small regular meals and snacks. He has what he wants when he wants. This means that he might just have soup and a roll to which I add neutral shake stuff. He has a little of whatever I make but doesn't like a plateful. He had half a plate of hot pot tonight with sprouts. I had the other half. Sometimes he just likes a filled baguette. I keep pot noodle type things in for those sort of days, for me.
                                I think the bed will help him a lot.
                                Love Fru xx

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