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Arm muscles weak after bladder botox shot

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    Arm muscles weak after bladder botox shot

    Hey everyone, after years of avoiding it I finally got the courage to have a bladder botox shot. 300 units. The process was flawless, I had no UTIs, almost no blood afterwards. The bladder effect kicked in around a week after, and got stronger as days went by; I can now hold up to 600ml without voiding, stopped using diapers and foleys at night.

    The problem is, as the title says, I now have weaker arm muscles. In theory, some botox just flows through the circulatory system and places in other muscles of the body. It's hard for me to say exactly which muscles got weaker but I'm suspecting most of them (I'm a C6 ASIA A) so deltoids, triceps, biceps, for sure. Now it's harder for me to transfer, put clothes on, drink from a cup or glass.

    I knew this was a possibility, I have a friend in my town who had a similar effect some years ago. Now is the time to be mentally strong, not victimize myself, and overcome these months. I know I'll be fine.

    I'm just sharing this to ask about the experiences of other people in this forum. Is this more or less frequent than I think? SCI Nurses, have you seen cases like these? Is 300 units too much botox for a tall, skinny guy like me?

    #2
    My Uro does 200 units as standard. When I was in the clinical trial I got 300 units. 300 units is also what I requested, and received, afterwards. I tried 200 once but it was significantly shorter acting. My Uro said the study data didn't show a big effect going from 200-300 but for me it was. I never noticed any secondary weaknesses but I am probably not as sensitive to losing just a little upper body strength as you probably are. I did eventually develop Botox resistance, though, after a few years of routine use.
    "I have great faith in fools; self-confidence my friends call it." - Edgar Allen Poe

    "If you only know your side of an issue, you know nothing." -John Stuart Mill, On Liberty

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      #3
      Oddity gave great information about botox ranges he has experience from.
      My recommendation would be to discuss your experience from your botox injection. Discuss the ranges the urologist uses and ask if you can have a smaller dose to prevent the upper extremity weakness. I am glad you had a successful response for your bladder management. It's all about finding the right balance with benefits and side effects.

      pbr
      The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

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        #4
        Originally posted by Oddity View Post
        My Uro does 200 units as standard. When I was in the clinical trial I got 300 units. 300 units is also what I requested, and received, afterwards. I tried 200 once but it was significantly shorter acting. My Uro said the study data didn't show a big effect going from 200-300 but for me it was. I never noticed any secondary weaknesses but I am probably not as sensitive to losing just a little upper body strength as you probably are. I did eventually develop Botox resistance, though, after a few years of routine use.
        How long did you go between retreatments?
        I've been getting 300 unit Botox injections more or less annually going back close to 12 years (I first received them as part of the clinical trials that led to FDA approval. Considering myself fortunate that it continues the treatment has not lost its potency in all this time. For the first 25 years of my now 38 years of paraplegia (T4 complete), my bladder absolutely ruled my life. Botox liberated me from bladder accidents and has been the only SCI-related treatment that I've received that's improved the quality of my paralyzed life.
        stephen@bike-on.com

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          #5
          Originally posted by stephen212 View Post

          How long did you go between retreatments?
          I've been getting 300 unit Botox injections more or less annually going back close to 12 years (I first received them as part of the clinical trials that led to FDA approval. Considering myself fortunate that it continues the treatment has not lost its potency in all this time. For the first 25 years of my now 38 years of paraplegia (T4 complete), my bladder absolutely ruled my life. Botox liberated me from bladder accidents and has been the only SCI-related treatment that I've received that's improved the quality of my paralyzed life.
          After the trial I got my treatments based on when the previous one wore out. In the beginning, during the trial, it was once a year for 2 years. After that each one got closer to the next because it wore out quicker and quicker. First treatment of 300units was effective for 8-10 months. Lost a couple months each time. Within half a dozen treatments, over ~5 years, it was basically not working much at all. No noticeable effect.

          I left it alone for another 5-6 years and recently tried again, this past April, with another 300units treatment, and this time it held for a lot longer. I got a solid 4 months out of it with a taper until now, and I've just started leaking at high pressures again. I'm scheduled for another 300units on Wednesday of this week, actually.

          If it can maintain 4-6 months of effectiveness I would be happy to do it twice a year. As you say, it can truly be a life changing amount of freedom.

          We are hoping my body has found an "equilibrium" with it at the current effectiveness but only time will tell. I am very much looking forward to the winter holidays and traveling to see family etc can without having to worry about the ol' pee bag.
          "I have great faith in fools; self-confidence my friends call it." - Edgar Allen Poe

          "If you only know your side of an issue, you know nothing." -John Stuart Mill, On Liberty

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