ALS News Today Forums Forums Living With ALS Treatment with muscle relaxers.

  • Treatment with muscle relaxers.

    Posted by John Russell on April 19, 2019 at 9:35 pm

    I’m wondering what experience people have had with muscle relaxers (baclofen, tizanidin, dantrolene). I have thus far declined to use them. While I am exhibiting a lot of spasticity I so far have chosen to deal with it and avoid the weakness I feel when using relaxers. I am still able to stand and move about wit a rollator, forearm crutches or 2 canes. While I steadily lose strength, I have not seen much muscle wasting or have I lost any weight.

    John Russell replied 5 years ago 3 Members · 4 Replies
  • 4 Replies
  • Betty Phillips

    April 21, 2019 at 10:49 am

    The tizanidine will make you tired so only take it at bedtime if possible. The baclofen, I’m on 100 mg a day. 20 MG 5 times a day it really doesn’t do much for me. I’ve had ALS for 12.7 years, maybe it worked in the beginning but it doesn’t do much now. I have horrendous cramping body wide and have found nothing that works for this.  It’s very very painful. Any repetitive movement makes it worse.   I find that if I’m cold the cramping and spasticity is much worse.  I take the baclofen but stopped the tizanidine long ago due to the tiredness.

  • Dagmar

    April 21, 2019 at 11:20 am

    Thank you for sharing that Betty. At 12.7 years (congratulations!) you certainly have many more ALS-related experiences that you can share with us. I look forward to learning more from you 🙂


  • John Russell

    May 11, 2019 at 9:33 am

    I recently returned from a visit to my ALS clinic.  It was again stressed that spasticity was the main cause of my total lack of balance and that muscle relaxers (which I do not like) were the only treatment.  Two things were suggested. The baclofen pump, which puts baclofen directly into spinal fluid, and botox injection into key muscle groups. I find both ideas scary.  I’m wondering if anyone in these forums has experience with or knowledge of these therapies.

  • John Russell

    May 15, 2019 at 9:28 am

    Betty Phillips,

    Hi.  thank you for your reply on muscle relaxers. I think our experience is similar.

    You are amazing for coping with this for 12+ yrs.  I was given mexilitine about 2 yrs ago because of unbearable cramping at night.  I take one 200mg cap at bedtime plus 5mg diazepam. I still cramp a little but just stretch my body in bed and go back to sleep. Very much an improvement.

    Mexilitine is a heart drug and this is an off label use so you need to have an occasional EKG to make sure there is no adverse effect.

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