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    • #20861
      Sonsu
      Participant

      Who is here on Riluzole have severe stomach upset and lack of appetite after few weeks being on medication and did it get better

    • #20862
      Carolyn Barry
      Participant

      I’ve been on Riluzole for a year now and I have had no side effects at any point. I hope you can begin to feel better soon.
      Carolyn

    • #20864
      Bill Woods
      Participant

      Stomach problems on Riluzole are most common, like 1/3 of patients. I tried EVERYTHING including proton pump inhibitors to no avail. The the nurse practicioner recommended Pepsid Complete [over the counter]: it worked like a charm, now only occasional stomach aches [a few per year]. Hope this helps!

      • #20865
        Sonsu
        Participant

        Thanks Bill.  Will try.

    • #20866
      NJGuy
      Participant

      I started with Riluzole 50mg 2/day but after taking for about 4wks, it gave me lot of weakness and lost appetite, so I talk to my neurologist, he suggested to stop for sometime. After stopping I really felt much better. I am thinking of taking 1/day.

      • #20899
        Susan guarcello
        Participant

        I stopped taking Riluzole due to extreme weakness. This led to depression thinking I was progressing very rapidly. When I stopped taking it the weakness was much less I now go for Radicava infusions. I have no side effects.

    • #20868
      Elaine Clark
      Participant

      Ive been on Riluzole for about a year and thankfully have had no side effects. Hope you feel better soon.

    • #20869
      ED
      Participant

      I tried Riluzole for six weeks. It made me very fatigued. I quit it and a couple of days later I got back to normal.

    • #20872

      Try taking it with a low fat snack. Food, in general, decreases riluzole absorption. Fatty food really decreases riluzole absorption. It comes in handy as a sleeping pill 1 hour before sleeping.

      Best of luck.

    • #20873
      Louis Savarese
      Participant

      Taking 2 Riluzole just over a year with no issues. Feel better🙏🏼

    • #20909
      Cathy
      Participant

      After being on Riluzole for about a month I became very tired and had absolutely no appetite – no food sounded good.  This lasted about 2-3 weeks but seems to be much better after being on Riluzole for about 7-8 weeks.  I still need lots of sleep (11 hours) but it is manageable.  Appetite is fine.  I continued to take the Riluzole so don’t know how I would feel if I were off of it.

    • #20918
      Dagmar Munn
      Keymaster

      I’ve been taking Riluzole (twice a day) for 11 years now – – with no side effects at all.

      I’m careful to take the first dose in the morning with a few sips of juice (or my fruit smoothie). Then wait a few minutes before consuming the rest of my meal. Same thing at dinnertime. Through experimenting, I found taking it on an empty stomach or with food (full stomach) resulted in some feeling of upset digestion. But my current method is working.

      Also, I’ve come to believe that the fatigue some folks blame on Riluzole is really coming from their ALS. It’s a coincidence that the onset of slowness is felt at the same time new patients are starting on Riluzole. So they blame the medication.

      So far, it seems to be “working” – – helping my body eliminate excess daily glutamate. I’m still walking (with a rollator), talking (slower), and able to eat solid foods (I use a powder to thicken thin liquids).

       

      • #21057
        Gwen McMartin
        Participant

        Hi Dagmar, I am recently diagnosed (bout a month) and am new to the ALS News Today Forum.  I have “limb onset”-in my legs, wearing AFO braces for foot drop, using a cane or walker depending on how much walking I am doing.

        I’m still trying to get a handle on this disease and how it affects people so differently.  Had my first “Clinic Team” appt last week so the speed of my progression has not been determined, though I think it is slow, hopefully. I am being treated by an ALS neurologist in Portland OR with a great supporting staff. I did take Riluzole for 9 days-with nausea and then vomiting, so stopped taking it.  Am still on the fence re: Radicava-will decide in January-guess I have a general aversion to drugs with side effects. Will also be going to an acupuncturist.

        I am busy packing, getting my house ready to sell, going to appts etc. I SO appreciate this website and forum since friends and family are helpful, empathetic but can’t relate. Thank you so much!

        Gwen

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