July 13, 2020 at 6:52 pm #15834Debra KaufmanParticipant
Hi: My cousin is the pALS, and she’s having some trouble adapting to the full Riluzole dose. She’s supposed to take two 50mg pills, one at night and one in the morning. When she takes the one in the morning, it makes her too dizzy so she stopped taking it. Has anyone experimented with taking a half dose in the morning to gain tolerance? Thanks!
July 14, 2020 at 2:33 pm #15850Eric BarnettParticipant
When I first started taking it it gave me severe stomach pains. Did that for about 3 months. Stopped for about 4-5 months.
started back up for about 6 months. No more for me. Felt like there was heavy weights on my liver/diaphragm area.
I did not experience dizziness though.
July 14, 2020 at 2:53 pm #15851Paul TavanoParticipant
I’ve been taking the 2x dosage for 10 years and have never experienced a problem. There is a new dissolving version that may be worth a try to see if that makes a difference. I think with the dissolving one you don’t have the same food restrictions before and after so that could make a difference. Good luck.
July 14, 2020 at 3:47 pm #15859
I like Paul, have been taking Riluzole for 10 years with no problems. I take them towards the end of my breakfast and dinner. Gulping the pill down with my last swallows of food make for easier swallowing. Food hasn’t seemed to interfere with the medication – – I have no digestive upset.
July 14, 2020 at 9:45 pm #15868Chuck KroegerParticipant
I took riluzole for a few days. had headaches upset stomach and malaise.. decided it wasn’t worth it for me so I quit. it was tough working it into a schedule of not eating before it after
July 15, 2020 at 2:53 pm #15875
Have you seen this? A new article about Riluzole:
New Insights on the Value of ALS Drug Riluzole
“The authors identified 15 studies. To be included in this analysis, each study had to have two groups of patients. One group was treated with riluzole and the other group did not take riluzole. Most of the studies showed a 6 to 19-month increase in median survival with riluzole treatment. This survival time is longer than the 2 to 3 months observed in the RCTs conducted on patients who had long-standing disease and may have been resistant to treatment. The authors also point to research that suggests that riluzole may work in different ways in people with early stages of ALS versus those whose disease is more progressed. The evidence, they say, points to benefits for both early intervention with this drug as well as prolonged therapy. “
To read the full article go to: https://alsnewstoday.com/2020/07/15/new-insights-on-the-value-of-als-drug-riluzole-sponsored-article/
July 16, 2020 at 2:47 pm #15883NancyParticipant
Instructions with my riluzole indicated taking it 2 hours after eating and/or 1 hour before. Does anyone have insight on if those time frames are necessary?
July 16, 2020 at 4:29 pm #15890
Nancy – – I believe they have that recommendation in case taking it with food causes digestive upset. I don’t remember seeing anything that says Riluzole has to be taken on an empty stomach or, that food interferes with its action.
I’ve been taking Riluzole for 10 years now: one near the end of breakfast, the second near the end of dinner. I’ve never experienced a problem.
July 16, 2020 at 6:53 pm #15893Chuck KroegerParticipant
After have a difficulties with it in the past I’ve decided to give it a second chance after reading the article where it could extend a person’s life from 6 to 19 months. that’s a lot better than 3 months for sure. I’ll also try it at the end of meals rather than on empty stomach
July 16, 2020 at 7:28 pm #15894Robert RigsbyParticipant
Hey, Y’all: 7/16/20; Bulbar onset. Chewing/swallowing difficulty came early. Proactively, I had placement of g-tube 10/28/19- SOOOO glad I did as all food/nourishment/water/med is by tube now. I mention this because I crush Rilozole and tube it in a 70ml syringe of water. After reading above experiences the idea I present is crush the tablet and drink it w/water- then flush it w/more water. What I’m thinking is that if the pill is in the stomach well-diluted w/much water there might be less chance of pain/nausea/other side effects— just a thought.
July 19, 2020 at 5:44 am #15905Danielle UskovicParticipant
You can actually get liquid riluzole to make it easier for administration via your feeding tube. I only learned of this recently during a hospital visit.
July 21, 2020 at 2:10 pm #15916Katherine HooksParticipant
<p style=”text-align: center;”>I took Rilozole for about 2 days. Got very dizzy and weak. No more for me.</p>
July 21, 2020 at 6:20 pm #15922Maria BergerParticipant
I was diagnosed with ALS in May of this year and started Riluzole a few weeks later. After about 6 weeks I stopped taking it to find out if the medication was the cause of my extreme fatigue. I had no energy at all, spent most of the day on the couch.
I felt like a different person after I stopped the Riluzole, being my old, active self again. No more Riluzole for me.
July 22, 2020 at 8:48 am #15929Veronika WuytsParticipant
we are diagnosed with a motorneurone disease, possibly ALS (new EMG on Monday). My husband started taking it early June, no problems the first weeks, then very tired and stomach upset and no hunger. And we thought depressed as well. So he stopped a couple of days, the depression seemed to go but only 2 or 3 days (he is still much in denial), he is much less tired and eats well again. Because of the benefit of the medication he started again taking it only in the evening and that goes well. Thinking about moving up to the full dosis again now.
July 23, 2020 at 2:15 pm #15933CateParticipant
When I started on Rilutek (brand of Riluzole), I made it to the three week point. With the full dosage, one in the morning one at night, I started experiencing very labored breathing and shortness of breath. And though my neurologist said this was not a side effect of the drug, my web MD research shows that it is Indeed an uncommon side effect. Lucky me. My breathing returned to Normal two days after stopping the drug.
July 23, 2020 at 5:05 pm #15937Marianne OpillaParticipant
I have been taking Rilozole since December 2019. Stopped it for 2 weeks in Jan because of reports of side effect of fatigue. But I think that is the nature of ALS, so restarted it. I will take anything even if it helps only marginally. My Rx says to take on empty stomach: 2 hours after eating and 1 hour before. I naturally wake up between 3-5 every morning, so I take it then. My next dose is 4 PM with not eating between 2-5 PM. That works for me.
I have no side effects that I am aware of.
July 24, 2020 at 4:43 pm #15942
Katherine and Cate – – I am curious… you both stopped taking Riluzole, so what medication do you rely on now to help slow your ALS progression?
July 29, 2020 at 11:05 am #15986CindyParticipant
So I take my Riluzole about an hour before lunch and at bedtime. No side effects.
July 30, 2020 at 3:11 pm #15994SusanParticipant
I took it for 6 weeks then bad side effects, light headed, distressed stomach, and weakness and more..Doctor said to stop so I did.
July 31, 2020 at 10:22 am #16003Veronika WuytsParticipant
after our last visit on Monday we decided to stop the medication all together. 1 pill is nu use according to the doctor. And if his quality of life diminishes already that much now taking it, when the symptoms are still kind of bearable, it is not worth it. every good moment is to be cherished.
July 31, 2020 at 10:43 am #16005Lois AndersonParticipant
I’ve been on riluzol since February of this year and had a feeding tube 2 months ago. I don’t know why, but I have been dizzy. It could be the riluzol, the formula or something else. My ALS clinic team doesn’t seem very concerned but it’s the difference between being steady on my feet or not.
August 1, 2020 at 12:16 pm #16013
Lois – – perhaps your dizziness is not directly related to medication or your formula —- but the lack of stimulation to your inner ear? I know it sounds crazy but, it’s true for many of us pALS. We become “sitters” and limit our movements… over time the lack of stimulation to the inner ear causes it to over-react from even turning the head right or left.
Here is a blog post I wrote about the condition, with tips to help our inner ears and “feel” balanced again 🙂
August 4, 2020 at 11:26 am #16027Lois AndersonParticipant
Hi Dagmar…. thank you so much for that link. I had seen the video before and tried them out to the extent that I can. I don’t know if dizzy is the proper term. The feeling I get is a rocking similar to walking on a boat dock over choppy/ water. It happens frequently when I sit up straight in bed or a chair. When I stand up he floor feels slanted. It doesn’t help that I can’t hold my head up due to ALS taking my neck muscles. Thanks for any feedback!!😊🙃😎
August 4, 2020 at 11:40 am #16029
Lois…. that rocky feeling from sitting up straight may still be connected to your inner ear (vestibular system). Especially if you are not holding your head up – – your eyes & brain have to adjust to a new “horizon” or, no horizon at all! Do you wear a neck brace to help keep your head up and level? If you cannot do the head nods, twists and tilts by yourself, have someone gently hold your head and take your head through the movements. The little grains in your inner ears need the stimulation.
As to your feet – – I too had false reporting from my feet. That involves the proprioceptor system, where our feet send signals to the brain about the surface we’re standing on. If you don’t stand or walk much and spend a lot of time sitting – – the messages can get garbled. I’d stand and swear my feet were pointed outwards (like duck feet) only to look down and see them pointed straight ahead.
Give your feet-to-brain stimulation: stand holding your walker (or a safe ledge/bar/etc) and gently shift your weight sideways from foot to foot. Maybe try 10-20 rocks. Once or twice a day. The movement will help your inner-ear as well as fine-tune the proprioceptors in your feet. 🙂
August 4, 2020 at 6:42 pm #16039
I’m in the early stages of ALS, having been “diagnosed” a month ago through systematic elimination of all other possible causes of symptoms that began about four months ago with slurred speech and constantly wet and drippy lips. I just started my second month on Riluzole yesterday. Funny thing: since beginning Riluzole the saliva problem has progressed from mildly annoying to a right pain in the butt. I’ll be trying to talk or eat or just sitting at my laptop and a big drop of saliva will just pop out of my mouth onto my chin, chest, lap, table, floor, whatever. I need to be consciously aware and as I feel it accumulating inside my lower lip suck it back into my mouth and tighten my lips. Not a problem at all when I’m lying on my back, only sitting up. Neurologist says it’s just one of the symptoms and drugs might help but cause other side effects. I know in comparison to other stories I’ve heard this is hardly worth bitching about. I still walk, drive etc without impediment. Anyone else have this saliva problem?
August 4, 2020 at 8:11 pm #16041
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.
August 4, 2020 at 11:16 pm #16046
Dagmar — I’m just getting the hang of swallowing, and throat clearing, before attempting to speak. I’ll give lozenges a try. Thanks. – Allen
August 5, 2020 at 11:15 am #16043CateParticipant
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.
August 6, 2020 at 4:13 pm #16057KayeParticipant
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!!!
August 6, 2020 at 6:41 pm #16059
I have ALS-related speech issues. Don’t know what “banking my voice” means.
August 6, 2020 at 6:55 pm #16060
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.
September 11, 2020 at 4:54 pm #16331Dennis FossenierParticipant
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.
September 11, 2020 at 5:45 pm #16332
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.
September 11, 2020 at 11:07 pm #16333
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?
September 12, 2020 at 12:45 pm #16335
Allen – – we all feel like that… perhaps it’s not the drug, but just the ongoing symptoms of ALS that you are experiencing?
September 16, 2020 at 12:13 pm #16357KimParticipant
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.
September 16, 2020 at 12:17 pm #16358Maria BergerParticipant
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.
September 16, 2020 at 12:29 pm #16361KimParticipant
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.
September 16, 2020 at 6:31 pm #16364
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.
September 17, 2020 at 4:08 pm #16369Marianne OpillaParticipant
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.
September 17, 2020 at 5:22 pm #16372Carl McAndrewParticipant
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.
September 18, 2020 at 12:42 am #16374Robert FoxwellParticipant
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.
September 18, 2020 at 7:00 am #16376Susan HoerberParticipant
Been on it since diagnosis sporadic limb onset in Jan 2018 (symptoms started Jan 2015 ) was tablet now liquid peg form. No side effects .
September 22, 2020 at 3:01 pm #16408Tim BurrParticipant
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.
November 12, 2020 at 1:42 pm #16782Carolyn BarryParticipant
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.
November 12, 2020 at 2:54 pm #16784Anthony SerdaParticipant
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.
November 12, 2020 at 3:10 pm #16785Mary TiknisParticipant
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
November 12, 2020 at 4:03 pm #16789Suzanne AkermanParticipant
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.
November 13, 2020 at 2:25 pm #16799DuaneParticipant
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.
November 16, 2020 at 7:24 pm #16812BradParticipant
My wife’s diagnosing neurologist prescribed rilozole immediately after diagnosis, 1 Tab 2X per day. On her first dose there was immediate dizziness, fatigue and facial numbness which required laying down. All those effects wore off about an hour later but repeated after each dose. Over the next several days, mucous seemed to increase and to become more ropey which aggravated swallowing and coughing and subsequent reduced oral nutrition and hydrating liquid intake. At the initial ALS Clinic consult about a week later, the attending neurologist there discontinued the rilozole and put her on atropine sulfate drops to counter the ropey mucous. This was successful and we are now awaiting suction/cough assist/APAP equipment.
November 17, 2020 at 8:48 am #16818George HuxholdParticipant
My dad takes 2 rilozole tablets per day. He is on an AVAP and has PEG. Within past week wakes up very foggy and short of breath. Feels like he may not be expelling enough CO2. He now reduced his rilozole to one per day and ALS team making adjustments on AVAP machine. Any suggestions as to how to expel the CO2 more proficiently? Could the rilozole contribute to the fogginess? Any tips we may be missing? He was diagnosed in June 2020. Thank you.
November 17, 2020 at 11:08 am #16819
George – – it’s good that you are getting advice from your dad’s doctor and ALS clinic team. Adjusting medication levels without their input is shooting in the dark. Personally, I doubt his breathing issues and fogginess issues are related to Riluzole and more likely the AVAP machine settings.
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