February 28, 2020 at 11:42 am #14653RickParticipant
Has anyone been using the drug RILUZOLE. My neurologist has suggested that I begin using this drug and from my research I am skeptical. I read about the side effects and the purpose of the drug which is that Riluzole works by decreasing your body’s levels of glutamate, an amino acid that affects nerves that send messages from your brain to your muscles. People with amyotrophic lateral sclerosis may have very high levels of glutamate, which can damage these nerve cells. So my concern is that I don’t recall any blood work that suggests that my glutamate level is high.
The side effects shown here seem typical of just about everything else you see on TV
Dizziness, lightheadedness, drowsiness, tiredness, nausea, vomiting, diarrhea, loss of appetite, stomach pain, or numbness/tingling around the mouth may occur.
I am still able to get around which includes driving but I have noticed a significant decline in just the last 6-7 months of upper body and strength in arms. Currently I can use arms but basically no strength in lifting items over 10-15lbs to waist height or almost any item above chest height. I was officially diagnosed 1 year ago , 2019, with ALS but I have had the symptoms worsening since mid 2017 and obviously didn’t realize why my strength was diminishing rapidly until I finally began going to physicians for testing.
Thanks in advance for any feedback
February 28, 2020 at 1:40 pm #14654
Hello Rick – – I have been taking Riluzole for 10 years now. I was diagnosed with ALS in 2010, and began within the first month. Back then, Riluzole was the only option…nothing else had been developed yet. I have noticed no significant side-effects (who can differentiate tiredness, loss of appetite, etc to ALS or the medication?). However, my feeling is that once someone wades into several years of living with ALS – – tingling around the mouth is a tiny, tiny side-effect and easily accommodated for the trade-off of retaining movement and breathing.
I’m not sure if there is a blood test for glutamate levels. I never had one. I view Riluzole as safe (unless you already have underlying liver or other health issues).
Also… although Riluzole is the sole medication I take, I have been diligently doing other things that have been shown to slow symptom progression: daily moderate exercise, maintaining healthy immune system (food, sleep, mental: stress reduction), positive well-being by engaging with others, pursuing projects, etc.
As you begin your journey living with ALS, take advantage of everything that is available to help slow your symptoms – – who knows, 20 years or more might become the new normal!
March 3, 2020 at 4:32 pm #14690LizParticipant
My husband has been taking Riluzole for 7 years. He has had no bad side effects at all and I believe it has prolonged his life.
He takes it twice a day.
The neurologist for my husband recommends it for all her ALS patients.
I am glad our prescription insurance covers it.
March 3, 2020 at 5:01 pm #14694BillParticipant
I do not take Riluzole. I’ve read so many so so reviews. My Neurologist (head of a university ALS clinic) advised me that it would likely not do much for me. He has not been impressed with results. I am admittedly a slow progression without the drug.
I think it sad that we as pALS need to rely on anecdotal opinions on important decisions like this. Thousands of pALS have taken or not taken Riluzole and we have no scientific collection of data to know if it is helping. I’d sure love to see a thousand ALSFRS tracks for Riluzole users vs non users. As new treatments hopefully come on line, I would sure would like to know where to spend limited resources.
March 5, 2020 at 4:18 pm #14736RickParticipant
I want to thank everyone for their quick responses and results.
I feel more comfortable moving forward with taking this drug.
June 27, 2020 at 3:53 am #15694
Thanks for your post. I’m new here and sorry to say I can’t offer any info on Riluzole since that, in fact, is what I’m seeking myself. You said your neurologist suggested the drug but I don’t think you said whether or not you are taking it. I was only diagnosed with ALS two weeks ago and am still in kind of shock, but in retrospect I think my symptoms began nearly a year ago when I first began to notice a slight lisp in my speech. It wasn’t until a couple of months ago that this progressed to a noticeable and annoying slurring of speech and saliva dripping from my mouth. My doctor sent me straight to a neurologist who ordered a brain MRI which showed nothing remarkable. She sent me to yet another neurologist at a larger hospital, who did a whole battery of electrical nerve tests and told me it was in all probability ALS. But he wants to do a cervical spine MRI and some more blood tests to rule out other causes. He said Riluzole was an FDA-approved treatment option that might slow progression of symptoms, but he was vague and non-committal about its efficacity. To take it or not was up to me, which is what you really love to hear from a doctor. I’m booked for the MRI and blood work on July 4 (no, I do not live in the US), at which time I need to decide on the Riluzome. Meanwhile, the only symptoms I’m experiencing, other than general fatigue and sleepiness, are the speech and saliva issues. So, I’m still curious as to whether you are actually taking Riluzole, for how long, and what if anything you’ve noticed. Thanks much for your help.
June 27, 2020 at 12:31 pm #15696
Hello Allen – – Let me refer you to my earlier response and comment above. I have been taking Riluzole for 10 years and to me, the biggest thing I notice is – – I’m still alive :-). It is the only medication I take, and I don’t take additional vitamins & supplements.
The testing you described during your diagnosis, is the same all of us have experienced. It’s certainly a long list of diagnostics, that in the end don’t turn up anything, except they’ve eliminated all other diseases and we’re left with ALS.
It’s too bad your doctor was noncommital about Riluzole. It has been the standard of care (and only option) for ALS patients for 20 years. Up until a few years ago with the introduction of Radicava – – which has so far, disappointed many.
I’m not a promoter for Riluzole, it’s just that when I read initial comments by newly diagnosed patients, I am disappointed doctors don’t take the time to explain things more to their patients.
Although the “cause” of ALS is still in investigation, we know the condition creates a situation where the brain/body produces excess glutamate (a by-product of oxidative stress). This glutamate build-up causes motor-neurons to die, which in turn disrupts muscle movement – – to the point muscles atrophy. So, Riluzole has been shown to be able to flush out the excess glutamate daily; preventing motor-neuron death. We don’t know why, but some patients respond well – – and can live well with this daily flushing. In others, the glutamate levels exceed what Riluzole can handle, and their symptoms speed up/worsen. Riluzole has been shown to delay symptom progression, but the excess point has been determined to be when a patient needs a tracheotomy in order to breathe. Then, you cease taking Riluzole. You can read more here: https://alsnewstoday.com/als-treatment/rilutek-riluzole/
Apologies for the long-winded reply. But again, I think it helps to sort out the drug mechanisms and if it can be of help.
Addressing ALS symptoms requires totally different treatments/medications. https://alsnewstoday.com/als-treatment/
Hope this is of help to everyone.
June 27, 2020 at 6:39 pm #15697
Thank you so much for your comments on Riluzole and your history taking it. And please don’t apologize for any “long-winded” reply. You’ve been more informative and more encouraging than any of the doctors I’ve seen. The last one concluded by saying something like there was clinically a two-to-three year life expectancy with ALS and I could try Riluzole if I wanted to. So, 10 years, wow, that’s a different ball park, isn’t it?
I wonder if I could ask, without being too invasive, what are your symptoms, what is your condition today after 10 years on Riluzole? And what sort of time-line did they progress along? What physical limitations are you living with? Do you use a walker, a wheel chair etc. How is your speech? How self-sufficient are you? How mobile? Can you drive?
I know these are terribly personal questions to put to a stranger, and I apologize. But I really have no one else to ask. Everything else I’ve read is anecdotal. I need to make a decision on Riluzole next week.
Thanks again. Really!
June 27, 2020 at 8:08 pm #15698
Allen – – not a problem 🙂 Here is the short version of “my journey with ALS.”
2010: First symptoms being drop foot and weak feeling in legs. Hands felt weak too. At the time I was physically fit and active. So, symptoms were a surprise. (started taking riluzole)
Within 1st year, weakness in legs progressed. Went from cane to a rollator (walker with wheels). No other changes.
5 years along: Noticed slurring when speaking and had trouble swallowing liquids. Began using a thickening powder in drinks.
All along, I’ve been doing modified exercise, working on posture, relaxation and voice. You can read all about it at my blog: ALS and Wellness Blog. https://alsandwellness.blogspot.com/2015/01/welcome.html
Currently, I don’t drive. My husband does cooking and assists me in and out of my shower chair – – for everything else I can dress, eat, type, walk, knit, etc. by myself. 🙂
June 27, 2020 at 8:53 pm #15699
Thanks so much for sharing that. My ALS seems to have started at the opposite end of the body from yours, in the mouth – slurred speech and drippy saliva. I think it’s what they call bulbar onset. Not a huge problem yet. My wife says she understands me fine, and that’s all that matters. I’m watching closely for any involvement of extremities but so far so good. I still walk, exercise and drive without problem and am hugely thankful for that. I will definitely start Riluzole this week at my next followup with the neurologist, largely based on your experience. I look forward to reading more of your blog, your articles and your book. Take care, and thanks again.
June 30, 2020 at 2:19 pm #15708NancyParticipant
Regarding taking Riluzole or not: each of us will really never know if it is helping, if you start taking it and the presumed side effects are too difficult to deal with, you can stop taking it. My neurologist felt that not that many people experience the side effects. I am taking it and I feel more tired, but as Dagmar indicated this may be the effect of ALS, not the Riluzole.
June 30, 2020 at 3:56 pm #15711Jonathan L MaddockParticipant
When I started taking RILUZOLE in August of 2019, I also started Neudexta at the same time. That being said I’m not sure which caused it, but a few days in I got dizzy and felt slightly nauseous, BUT, this was only for two or three days. Since then I have continued with both those meds, and added Radicava starting in October of 2019.
It’s impossible to figure out if they are helping to prolong my life or not. I have to go with the statistics that say that they do.
I also continue to stretch and walk, although both are getting more tiring more quickly.
June 30, 2020 at 4:27 pm #15714SusanParticipant
I took RILUZOLE for 6 weeks and the side effects were awful. so my neurologist told me to stop and I felt much better.
June 30, 2020 at 5:53 pm #15716Christine MorettiParticipant
Hi Rick, I’ve been on Rilizole since about September 2016. I have had no side effects. I did hear from a couple fellow pALS that they experienced some stomach issues and/or bowel issues, but I can honestly say I have had no issues. Good luck with your decision.
June 30, 2020 at 8:05 pm #15721Maria BergerParticipant
I started taking Riluzole 4 weeks ago and I have not experienced any side effects.
Good luk in your journey!
July 2, 2020 at 3:52 pm #15740Fran FinneyParticipant
In response to your comment about having “normal levels of glutamate in your blood”: around 40% of PALS have elevated glutamate in their CSF – cerebrospinal fluid – not in their blood. Laboratory blood tests can’t measure CSF levels. To check your CSF glutamate level you would need to have a MRS study done, (magnetic resonance spectroscopy) or have a spinal tap. We do know that elevated levels of glutamate in the CSF are neurotoxic.
Not all forms of ALS are the same, and Riluzole might or might not help you. But your blood level of glutamate won’t predict your response or its efficacy. It might be worth a try, and if you have bad side effects you can always choose to stop taking it.
Here is one example of a study done showing a link to CSF glutamate toxicity in ALS. https://alsnewstoday.com/2016/01/15/n-acetyl-aspartate-to-glutamate-ratio-correlates-with-als-disease-duration/
July 3, 2020 at 11:41 am #15748David CrellinParticipant
Hi, I too was prescribed with ‘the only treatment authorised in the UK’ Riluzole & told it might give me 3 more months. Today I have written a paper for my consultant asking him to prescribe:
Metformin SR – trials targeting the C9fALS I have beginning in Florida. The drug has been used for decades to treat Type 2 diabetes and infertility (neither of which affect me!) Cheaper by far than Riluzole.
Ibudilast / MN-166 prescribed in Japan for bronchial asthma and in trials for people with less than 600 days since first weakness. Again, cheaper than Riluzole.
AMX0035 approved with orphan status by FDA, a compound of TUDCA (search Amazon!) and sodium phenylbutyrate.
I am lucky to have a group of friends who work in rather senior roles in genetic research, so I pity my consultant!
Best of luck, David
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