Viewing 6 reply threads
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    • #18158
      Bob Scannell
      Participant

      My wife, who has ALS, was having severe itching issues. We tried various things, then a doc suggested Gabapentin.  So far it seems to have helped the itching.  I have also read that there are some potential other positives about Gabapentin for ALS, which is encouraging to maybe stay on this med.  But, I have also read some potential downsides, including I think added weakness, etc.   Does anyone have long term experience with Gabapentin for ALS?

    • #18168
      Kim
      Participant

      I too am curious what other ALS patients have experienced with this. My ALS doctor just prescribed Gabapentin (100 mg at night) to help with possible sciatica (low back) pain & leg pain & swelling. I’m also taking Baclofen for muscle cramping.

    • #18169
      Carolyn Barry
      Participant

      I’ve been taking 400mg of Gabapentin since October.  My neurologist prescribed it specifically for the pain in my feet, which is not only caused by my ALS but the peripheral neuropathy in my feet is also a factor.  The pains had gotten severe enough to wake me up several times during the night.  I haven’t had any side effects whatsoever from the drug, and while it has stopped the waking at night, it hasn’t completely eliminated the daytime pain.  It has not caused any increased weakness in my walking.  I had previously tried Duloxetine and then Nortryptilene, but had to discontinue both because I they each caused a negative effect on my bladder function.  I plan on continuing the Gabapentin, because overall my pain has lessened.

    • #18171
      Chuck Russell
      Participant

      I have besn on gabapentin 300 mg, 3 times a day, for about 18 months. Mine is also for neuropathy in my feet. I was diagnosed with ALS about 26 months ago. I can’t say anything about increased weakness, I’ve been on it for awhile, I still get around. Of coarse I have weaken, I mean thats the nature of this challange but, I don’t think it has increased because of the gamapentin. I do know this, if I don’t take it, my feet really really don’t like me.

    • #18185
      Lowell
      Participant

      I also was diagnosed 24 months ago. I have been taking it for 24 months, 600mg 3 times a day for my knee. If I don’t take it my knee will sometimes just buckle. However I think that is due to another injury that has nothing to do with my als. I don’t notice any issues concerning weakness.

    • #18208
      Gideon
      Participant

      My wife taking Gabapentin 300mg x3 three  time a day for about two years.

      I try to reduce Gabapentin by 1/3, The consequence was my wife hands start shaking ,

      went back to original dose.

      P S if you taking pill for depressing ,  Do not taking it with Gabapentin

       

    • #18628
      Jim Conner
      Participant

      Gabbies? I tried it for 1 year for pain before my ALs diagnosis. Did nothing at all. My neurologist took me off when I was diagnosed. My daughter is an Addiction Counselor. She told me Gabbies are used in combination with certain drugs to accelerate the “high”.  Keep them away from prying eyes.

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