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  • shelly21
    replied
    EvelynMW yes taken it 30 mins ago. Start low and then increase slowly.
    Yes its the university of Edinburgh and mnd Scotland. Its basically testing drugs already in existence.

    Great that you are doing a gene trial re your own 'wonky gene"

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  • EvelynMW
    replied
    I have been accepted for a gene therapy trial, 1st dose of placebo or drug, 21st July, Kings College Hospital, London

    shelly21 Congratulations! Haven't heard of the SMART trial, but will be thinking of you; you must be being dosed right now!

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  • shelly21
    replied
    Ellie it amazed me re how many diagnosed.😒

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  • Ellie
    replied
    That's good news Shelly - hope all goes well for you xx

    My Neurologist also diagnoses about 3 people per week. 😟

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  • shelly21
    replied
    I attended my 2nd smart trial appointment today.

    They did the ALSFR score.
    Took 3 lots of blood. 1 dna and 2 research database.

    Did lengthy tests re thinking, logic and memory tests. Very hard in places.

    Then 3 bottles supply of liquid solution.
    take it at night just in case it makes you drowsy.

    Now phone call appointments for a while and filling in a daily report sheet.

    A very relaxed appointment, yet efficient. Whilst chatting i asked the neurologist how many people does he diagnose? He said including 2nd opinions 3 per week. I was not expecting this amount. But Birmingham is the only mnd centre for miles.

    Just info for anyone thinking of taking part.

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  • Ellie
    replied
    That makes sense shelly21 Baclofen's half life is 6-8hrs, so it's wise to err on the side of caution until you know how it affects you. xx

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  • shelly21
    replied
    Ellie that does seem a big rise re asking me to take every 4 hours. I think I will start with 3 doses of 15mg and see how it goes.
    x

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  • Ellie
    replied
    Originally posted by shelly21 View Post
    4 doses of 15mg. So 60mg daily.
    I am in no way disputing your Neurologist's prescription but, with a 4x daily dose, you may end up taking it more frequently than 6-8 hourly, which isn't great - by that I mean you may end up having a high concentration of Baclofen in your blood for periods of time, which may not be great whilst getting used to the higher dose.

    I have been on 100mg per day and now, thankfully, am back on a maintenance dose of 60mg, 3 x 20mg, although the odd time I have to take an extra antispasmodic when my legs refuse to bend 🙄 (if I get icy cold)

    You will find your own way with a regimen once you know how your spasticity reacts to it. xx

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  • shelly21
    replied
    Ellie thank you so much 💕. I've made the other half aware. He has doubled my dose from 30mg (10mg x 3) and now wants 4 doses of 15mg. So 60mg daily. He explained that it can go up to a 100.

    x

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  • Ellie
    replied
    Originally posted by shelly21 View Post
    Should I maybe not try to walk etc whilst new increase takes hold?
    Not necessarily, just be aware that it *might* lower your tone enough as to make your legs weaker - def take it first time when your partner is around.

    Are you going from 10mg to 20mg?

    Originally posted by shelly21 View Post
    Also when sat on a chair the tremor in my leg was crazy
    That happens me too. If you can stand, put stand and ut your weight through that leg and/or have somebody push your ankle upwards to invoke more clonus - a few of these will clear the clonus. If you're alone, push your foot into the floor or at an angle into a wheelchair footrest.

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  • shelly21
    replied
    Ellie i think its knees and ankles. With my leg out stretched and he held my foot up and knee down and mega temors like really shaking. I had noticed my knees getting very stiff. Also when sat on a chair the tremor in my leg was crazy.

    Should I maybe not try to walk etc whilst new increase takes hold? I really don't know about spasticspasticity.

    I go on the trial I will see neuro in 6 months. Thats better than what i was getting.

    X

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  • Ellie
    replied
    Originally posted by shelly21 View Post
    I am impressed already as during examination he noted clonus in my legs and doubled my baclofen.
    Clonus in knees, ankles or both? Be aware that doubling your dose of Baclofen *might* lower the muscle tone in your legs a bit too much affecting weight bearing abilities (for transfers?) If it does and the clonus doesn't particularly bother you, you have wiggle room on the dose.

    Originally posted by shelly21 View Post
    I had not seen a neurologist since diagnosis day so it was worth it very much.
    😲 Will you see the Neuro on an ongoing basis now?

    Originally posted by shelly21 View Post
    If bloods ok then I start the trial on the 13th of July.
    Everything crossed for you 😘

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  • shelly21
    replied
    Tony i attended my smart trial today. its a good 2 hours. Dont sign the paperwork as you have to do it in the presence of the team.

    Had full examination, blood test & ecg.

    I am impressed already as during examination he noted clonus in my legs and doubled my baclofen.

    I had not seen a neurologist since diagnosis day so it was worth it very much.

    If bloods ok then I start the trial on the 13th of July.

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  • shelly21
    replied
    Tony thats great you being called up. I think they had a slow start at the QE due to long term sickness.

    Ellie 1st assessment is bloods, look at what meds you are already on & I think Alsfr score. 2nd appointment you start the med taking. It starts with low dose and builds up.

    Tabbycat hopefully you have the real deal 🙂

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  • Ellie
    replied
    Originally posted by Tabbycat View Post
    Probably got the placebo
    😩

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