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    Warfarin

    Hi all, just wondered if anyone had any experience of taking warfarin with ALS. My friend takes it for DVT and said if he doesn’t he gets terrible cramps. I was wondering if it would ease my cramps especially in my legs. Pharmacist says go ahead with a small dose. For those who don’t know me I live in Thailand where advice is harder to get hold of than the drugs themselves.
    Thanks Jerry

    #2
    Hi Jerry;

    It's a new one on me but it may work. I'd be very careful taking it as other drugs and food/drinks can intensify the affect.

    Also people here have their blood levels monitored regularly when taking it.

    No first hand experience but Mum used to have it to thin her blood because of heart troubles.

    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


      #3
      Hi Jerry,

      Further to Terry's advice, the NHS has some detailed information about Warfarin on their website.

      https://www.nhs.uk/medicines/warfarin/

      It looks like there's a lot to consider before taking Warfarin including whether it is suitable to be taken with your current medication, including the Edavarone.

      I know from experience that cramps can be very unpleasant, but fortunately I can usually get rid of the pain quite quickly with painkillers.

      Hopefully you can get the medical advice you need to be able to rid of the pain you are experiencing.

      I hope you are enjoying the time with your good friend who is visiting you.

      Best wishes,
      Kayleigh x

      Comment


        #4
        Jerry, I'm all for trying meds off-label but Warfarin, no way, it's a heavy duty drug and has onerous restrictions.

        It interacts with a long list of meds (both prescrpition and OTC), food and alcohol.

        And, as Terry said, your INR levels need to be constantly monitored as they can go up & down dramatically from week to week, according to what food or alcohol you had.

        What have you tried for leg cramps so far?

        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


          #5
          Hi Ellie, I haven’t tried anything for the cramps. I did inform my neurologist but he didn’t recommend anything so I’ve just been living with it. TBH I took half a tablet 2 days ago and have not had any cramps since but will visit the neurologist again to get his view before I do anything else. Thanks for the advice xxx Jerry

          Comment


            #6
            Hi Kayleigh, thanks for the info. See below my reply to Ellie but thankfully you guys have scared me off. Yes, Dave and I are having a ball, well as much as someone who can only walk 10 yards without a rest and an overweight copper can have ����.
            Love Jerry x

            Comment


              #7
              Hi Terry, well it eased me for a while but going to look into it more it really was bloody painful. I couldn’t even cross my legs without cramping up. Thanks for the heads up.
              Love Jerry

              Comment


                #8
                Hi Jerry,

                Magnesium tablets are good for cramps (ease into them as they can have a laxative effect) as is massaging cramp with magnesium oil.

                Quinine Sulfate is a prescription med for treating leg cramps, particularly at night.

                Also keep well hydrated.

                Good luck.

                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


                  #9
                  Hi Jerry,

                  Sorry if I sounded like a bit of a clucky mother hen - I didn't mean to frighten you with the NHS information about Warfarin! It was just a bit of sisterly concern for our 'forum brother' in Thailand - just wanted to make sure that you are aware of the possible side effects etc. Interesting that the Warfarin seems to have got rid of your cramps though! Hopefully you will be able to get an effective alternative to the Warfarin which is not so risky for you to take.

                  Love
                  Kayleigh x

                  P.S Tell your friend Dave that he should be giving you a piggy-back when your legs get get tired! My legs aren't too clever either, but thankfully I have got an electric wheelchair, so that I can still make those essential trips to the pub! If I could, I would send you a top of the range electric powerchair so that you could race Dave to the bar - and from what you have said about him, it sounds like you would probably get to the bar first! Joking aside, it sounds like your good friend Dave is a cool guy, just like you!

                  Comment


                    #10
                    Dear Jerry,

                    Warfarin is a medication to help treat and prevent blood clots it is not a medication intended to treat cramps.

                    Please do speak to a doctor before taking any prescription medications over the counter because the side effects or effects on you may prove detrimental.

                    There are drugs designed specifically to treat cramps such as Baclofen or Tizanidine, again we would always suggest that a consultation with your doctor is required to make certain these drugs would not be contra indicated for you due to any previous medical history.

                    I can understand how difficult it must be for you to speak to a doctor about your condition but for your own safety please do not take any medications which are not intended for you.

                    With kind regards
                    Jacqui Anderson
                    Senior MND Connect Adviser
                    MND Connect
                    Contact us on 0808 802 6262 or at [email protected]

                    Comment


                      #11
                      Thanks Ellie, the magnesium sounds a good idea I’ll see what the doctor says this week.
                      Thanks love Jerry

                      Comment


                        #12
                        Hi Kayleigh,

                        No problem at all being a cluck mother hen ��. The wheelchair is probably the next step for me though I have other issues to look at first. Dave left for home last and ur right I’d beat him to the pub all day. The cramps with the Wafarin disappeared but I’ll look at something else to alleviate things.
                        Take care love Jerry
                        PS. Pleased you’re still getting to the pub ��

                        Comment


                          #13
                          Thanks Jaqui, well noted.
                          Regards Jerry

                          Warfarin is a medication to help treat and prevent blood clots it is not a medication intended to treat cramps.

                          Please do speak to a doctor before taking any prescription medications over the counter because the side effects or effects on you may prove detrimental.

                          There are drugs designed specifically to treat cramps such as Baclofen or Tizanidine, again we would always suggest that a consultation with your doctor is required to make certain these drugs would not be contra indicated for you due to any previous medical history.

                          I can understand how difficult it must be for you to speak to a doctor about your condition but for your own safety please do not take any medications which are not intended for you.

                          With kind regards
                          Jacqui Anderson
                          Senior MND Connect Adviser[/QUOTE]

                          Comment


                            #14
                            Hi Jerry,

                            Admittidly, I don't go to the pub every day! But it's good to get out and about whenever I can. There are quite a few pubs, restaurants etc near my home, and using an electric wheelchair means that I can get there and back independently (and without the risk of falling over - especially after a few drinks!).

                            Apparently, there are even electric powerchairs with seats that can rise up to bar-level!:-

                            https://www.pridemobility.com/p/jazzy-air

                            Cheers!,
                            Kayleigh x

                            Comment


                              #15
                              Hi Kayleigh, never thought I’d be in the market for one but they look pretty cool. I went to a party Friday and the anxiety of wondering how far away the toilet is and would I manage to make it did my head in.
                              Thanks again xxx Jerry

                              Comment

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