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Rilozole experience?
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Allen – – I don’t think your excess saliva issues are related to the Riluzole, but it’s a typical symptom of ALS. I’ve experienced this in the past few years… right now, I notice I’m not swallowing enough and saliva accumulates. Sucking on a lozenge or cough drop helps me regulate swallowing. And you just have to be aware of when it “will strike” and avoid those situations. Like, always swallow before speaking. If it gets too irritating to live with, I’ve heard that Musenex (drugstore) helps dry out the mouth.
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Dagmar — I’m just getting the hang of swallowing, and throat clearing, before attempting to speak. I’ll give lozenges a try. Thanks. – Allen
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Dagmar…. Without riluzole, I’m not taking any prescription medications. Tons of over the counter supplements. I do wish I could handle the drug, but my breathing was severely compromised. I’m taking another look at radicava.
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I started on Riluzole in June when i was diagnosed with ALS. I take it 1 hr before lunch, and at bedtime. No noticeable side effects. Prescription did specify empty stomach, 1 hour before or 2 hrs after a meal, & 12 hours apart.
As ALS has affected my voice, i have started banking my voice. What an intetesting experience!!!
Kaye -
I have ALS-related speech issues. Don’t know what “banking my voice” means.
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Allen, some pALS use a software app to record words and phrases using their current (good) voice. These recordings can later on (when you lose your voice) are loaded into your computer or an AI device, so the voice used by the device is yours.
Some pALS find value in doing this. Others don’t care what the AI sounds like.
https://alsnewstoday.com/2019/08/20/voice-banking-dysarthria/
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I missed this conversation back in July/August but thought I would put my two cents worth in as well. I was diagnosed in Nov 2019 and started Riluzole in December 2019. After about 3 weeks I notice a loss of appetite and all food was tasting bad. My stomach was somewhat upset as well at the same time. After another couple of weeks of the same I stopped taking it for about 3 weeks and everything returned to normal.
I then decided to try taking it with my breakfast and supper instead of the recommended “before meals on an empty stomach”. After about another 2-3 weeks I had the same issues of loss of appetite and all food taking on a bad taste. By this time I had lost 25 pounds and decided that the weight loss would erase any benefits of getting 2-3 extra months from the drug.
Since then I have managed to gain back about 10 pounds but gaining weight with ALS is not an easy thing. Now that I hear that Riluzole may extend life by 6-19 months it puts a new perspective on things. I am wondering if I should give it one more try before I dismiss it forever? Just another decision to make on the ALS journey.
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Dennis – – thanks for sharing your experiences with Riluzole. It’s amazing how varied of experiences our members are reporting.
I’ve been taking it for 10 years now (guess it “checked the box” for extending life), have never noticed side-effects or… had my appetite affected. Lately, from reading other’s suggestions, I’ve changed to taking the first pill with liquid at the start of my breakfast (so the pill at least hits an empty stomach). Then the same with the second pill – – with liquid at the start of dinner. This is all to hedge my bets on getting the most out of the medication and not have it delayed in absorption. Who knows if this will help or not?
Dennis – do check back with your doctor regarding your side-effects and whether starting up again is advisable. We don’t have but 2 medications to use to slow down symptom progression… we might as well use them… until we have a cure.
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Been taking Riluzole about four months and have noticed a bone-crushing fatigue that sets in later in the day. I try to get in a 30-minute walk around dawn when my energy level is highest, followed by some light weight trainiing and if there’s any energy left some time on a stationary bike. But fatigue and sleepiness later in the day is really debilitating. I can’t pass up a bed or sofa without lying down for a nap. I even take a nap BEFORE retiring for the night. Anyone else on this drug experiencing similar fatigue?
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Allen – – we all feel like that… perhaps it’s not the drug, but just the ongoing symptoms of ALS that you are experiencing?
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I was diagnosed with ALS in September 2019. Started taking Riluzole end of October. Neurologist had me start out with just one a day for 2 weeks and then increase to the twice a day. I too had dizziness/light headedness but continued taking it. In January 2020, the Dr. did bloodwork and said the liver levels were slightly elevated (after only taking it for 3 months) and with the dizziness they didn’t feel it was worth it and had me stop taking it. The only medication I’m on is Baclofen for the muscle cramping, Vitamin B-12 prescription supplement due to blood levels showing low on that, and over the counter vitamin c and Vitamin D for immune support. The ALS does seem to be progressing much faster than I’d like. I have limb onset and use wheelchair now.
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I also experienced extreme fatigue when taking Riluzole. I stopped taking it after about 8 weeks and inmediately felt better. I won’t tame it again.
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I too like so many of you experience the extreme fatigue. This continued even well after stopping the Riluzole. I am low on B-12 & continue taking the b-12 supplement. For me, I think it’s just a matter of the Beast/ALS Progression.
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Thanks to all for sharing. For what it’s worth, I honestly can’t put my extreme fatigue squarely on Riluzole. I also have prostate cancer and get a three-month Enantone shot, a major side effect of which is…wait for it…extreme fatigue. So I guess what I’m experiencing is kind of a perfect storm of side effects. To this erudite observation my neurologist responds with a shrug and “yeah, probably.” Should I just quit all the meds and take up rock climbing? My wife says “don’t you dare!” I have to say, though, that I’m feeling a bit lucky that this ASL thing has waited until nearly my 80th year to strike. My attitude would surely have been much different if it had been 40 years ago.
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I was diagnosed 1 year ago. Taking Riluzole without issue. I started IV Radicava 10 days per month in July. The Radicava makes me feel better with less afternoon fatigue. Even when I am off of it. It is hard to figure out what is ALS and what is drug side effect at first, but I just think most everything that I feel is related mostly to ALS.
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I was diagnosed in July of 2019 and have been taking 2 Rilozole a days. About every two months or so ( I don’t an accurate number of days because it is different every time) I completely lose my taste. I cut back to one tablet a day, and in about a weeks time I get my taste buds back again. When I feel my legs twitching very badly, I go back to two tabs.
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Carl, I also have a loss of taste but never attributed it to the Riluzole. I’ve been taking it since my diagnosis 2-1/2 years ago, but only noticed the loss of taste this past spring. I thought it could have been a covid symptom, but it was the only symptom I had.
I’ll bring it up with my neurologist during my upcoming visit.
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Been on it since diagnosis sporadic limb onset in Jan 2018 (symptoms started Jan 2015 ) was tablet now liquid peg form. No side effects .
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I can’t get up in time to take the first one an hour before breakfast, so I take it two hours after (which is more than an hour before lunch). Then I take the second one when going to bed, which is more than two hours after supper. Seems to work for me.
Tim Burr
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I was diagnosed just in October, and started Riluzole a few days later. I take it an hour before I eat, twice and day, and haven’t as of yet, had any side effects. My exhaustion has been a constant in the past year, so I didn’t think it was related to the drug. Maybe it was due to the ALS, before they figured out a diagnosis for me. Thanks to everyone replying here, as it’s so helpful to hear what might happen, as I’m on it longer. I also won’t feel I have to be as strict as to the timing of when I take it. Sometimes it’s way off, and I was thinking it might cause a problem. Guess I’ll just try, and see how I do.
Carolyn
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Hey all,
I’ve been taking Rilozole for 4-6 weeks and I’ve noticed a rash across me abdomen and palms. Has anyone else experienced this? One of my doctors says its not the meds, but its the only thing I’ve added to my routine.
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I have been taking Riluzole for 3 months on an empty stomach as directed
I noticed that my appetite has been affected slightly Everything taste different and I occasionally feel slightly nauseous I feel like the benefits are worth it
I am also on Radicava
Mary Ann Tiknis -
I have had trouble with nausea all my life, but more so with my ALS.
I tried Riluzole for a month or so. Too much nausea, so I quit.
With my nausea, taking pills doesn’t sound too good at times. I take what I need to take; nothing related to ALS.
Suzanne
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I’ve been taking it since 2013. It may make me nauseous, but I continue to take it for whatever good it may do. Doctors spend too much time studying books and attending lectures, rather than spending more real life time with their patients. Doctors don’t know or understand everything. WHILE MOST PEOPLE MAY NOT GET A RASH, A FEW MAY, OR IT COULD BE DUE TO A BAD DRUG INTERACTION.
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