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Rilozole experience?
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!
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48 Replies
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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. -
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.
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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.
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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
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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/
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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?
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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.
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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
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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.
Thx RDR
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Hey Robert
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.
Regards Danielle
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<p style=”text-align: center;”>I took Rilozole for about 2 days. Got very dizzy and weak. No more for me.</p>
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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.
Maria
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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.
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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.
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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.
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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?
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So I take my Riluzole about an hour before lunch and at bedtime. No side effects.
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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.
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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.
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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.
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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 🙂
http://alsandwellness.blogspot.com/2016/08/balance-from-outer-space-to-inner-ear.html
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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!!???
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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. 🙂
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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?
Thanks, Allen
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