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Relyvrio
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My Wife taking Relyvrio for 14 days now, For the last 3 nights (2 AM) she has a Spasms in both of her legs ( she is completely bedbound and has broken ankles)
And sometimes she has difficulty breathing,
I called Amlylyx and told my doctor they all suspected Relyvrio and told me to stop giving it for one week.Does Das anyone have this problem?
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Started taking it 3 days ago. Yes, taste is not great but manageable. No side effects so far. 25 days to go and then move up to 2x day. In a clinical trial for Trehalose. Also no side effects but could be placebo.
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I started Relyvrio January 4th and stopped the 9th. I have a bladder condition (interstitial cystitis) that had been under control for years until Relyvrio. I knew taking it was a gamble, but wasn’t prepared for how quickly it triggered a debilitating flair of bladder pain.
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I had responded previously that my husband had taken Relyvrio for 6 weeks and had no side effects. Unfortunately, shortly after sharing that, he began experiencing GI *side effects that were keeping him homebound. We stopped the Relyvrio and the side effects went away. His doctor said he can either try a smaller dose or stop it completely. He opted to stop it completely.
*Nausea with vomiting necessitating carrying an emesis bag constantly and constipation leading to diarrhea multiple times a day.
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So sorry you are not able to take it. I pray for you a miracle healing, and I pray for myself too..
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I am in my second starter week of Relyvrio at (1) packet per day. Next week I will go to (2) packets per day. No side effects to report; only has an initial bad taste. I offset the taste with a little mouthwash just before and immediately after.
My doctor at Columbia initially prescribed the compound of Sodium phenylbutyrate and Tudca (in capsule form) while waiting on FDA approval of Relyvrio. No side effects to report; no taste issues with capsule form.
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I began Relyvrio on Nov. 5, and aside from the bitter taste have had no problems. As previously noted, taking at room temp, and waiting a bit, seems to reduce the bitterness. (The company suggests taking before eating, and within one hour of it being prepared.)
I’ve finally gotten into a regimen that limits the mental preparation, and just do it: I take it before breakfast and dinner, and take significant sips without stopping until I’ve swallowed about nine times, then proceed again with the small amount remaining, with one or two breaks. It’s prepared in less than 8 oz. of water.
Wishing all of you the very best.
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Jennifer that’s good information. I will be starting it soon but since I never take drugs on an empty stomach I will mix it with my Glucerna with water added and probably have a small amount to eat before taking it. Hopefully it has some efficacy, the Phoenix trial will shed more light on it.
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I think that considering the price, the least they could do would be to mask the taste of it.
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hello everyone!
does anyone here knows the difference effectiveness wise between Relyvrio and the tudca/PB compound?
I’ve been taking the compound for 9 months (no side effects) and now that Relyvrio is available I would like to know if it’s worth it to make the change since the price difference is huge.thanks and have a nice day!
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Folks paying 700 a month, 8,000 a month. 22,000 a year. A drug that costs 150,00 a year??? All this to delay the inevitable.
insurance companies making medical decisions.
imagine what the price would be if they had a cure
I don’t want to bankrupt the people I leave behind.
yes, I am frustrated
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Elias, There will be Phase 3 completion in 2024. As of now it’s debatable whether it has any efficacy.
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I was diagnosed with ALS in May 2022…I’m a 74 years old. I was told I have a slow moving variant. I am taking Rilutek, Radicava, and Relyviro.I’ve been taking them for about 6 monthss and am still fairly functional except for fine motor control.I have problems speaking and weakness on my right side.ity
My question is this…I have a serious lack of energy, being able to only talk or be active for 2 hours and then I’m exhausted.
I don’t know if this energy shortfall is due to the medication or the disease itself. Has anyone else experienced this???
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Caryl, …wow, you are taking all3 of the current ALS medications? How did you swing that with your health insurance? I imagine you are paying a lot out of pocket. And, I wonder… is taking all3 advisable? I’m curious, what was your neurologist’s rationale for prescribing all 3 at once?
As for your feeling of low energy, that is common with ALS. Plus, I would guess that you being diagnosed only 9 months ago, your body is beginning to feel the effects of the condition. In addition, your combo of medications could also be contributing.
Having ALS means a certain number of motor neurons have already been lost. Our bodies have to operate with less communication from brain to muscle. So movement will be slower. I call it “living in the ALS slow lane.” Perhaps this post I wrote will be of help to you:
https://alsandwellness.blogspot.com/2021/09/living-in-slow-lane-of-als.html
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Caryl, do you take any other meds? The disease generally does not cause what you are describing. How is your sleep? Do you have sleep apnea? Probably the ALS DRUGS you are taking wouldn’t cause it from what I have read. But those combined with others may. See your Doctor .
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Hi, diagnosed in December 2021. Started Radicava mid April 2022 via iv, then when they came out with the oral solution I switched, still,progressed quickly, several broken bones from falling, then in January 2023 started Relyvrio, very nasty taste, dealt with using Listerine strips on the tongue. It’s been 10 weeks and I am still progressing, added Riluzole also in January 2023. No side effects from any of the 3 medications I am on, but still declining!
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Caryl, the issue you describe “I have a serious lack of energy, being able to only talk or be active for 2 hours and then I’m exhausted.” would not be related to the disease in my opinion, since that is severe. Yes, people will lose some general energy overall but not what you describe. I can’t say whether the 3 ALS DRUGS you take would have this effect in combination. However, feeling exhausted after only 2 hours is far from normal even with ALS. I would see a doctor who will also screen for possible depression.
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In my effort to improve the taste of Relyvrio and make it more palatable to drink, I discovered that the hand-mixing method used to prepare it was inefficient and often left granules of Relyvrio in the glass. These leftover particles were gritty and had a strong bitter taste when swallowed.
To address this issue, I decided to purchase a vortex mixer, specifically the Promixx iX-R Rechargeable Powerful Supplement Mixer (available on Amazon: https://www.amazon.com/Promixx-iX-R-Rechargeable-Powerful-Supplement/dp/B07HCM92SV). There are others available from Promixx and other vendors that are less expensive.
Here’s how it works: After adding 8 oz. of water to the mixer, you start it up and wait for a vortex, similar to a tornado, to form. Once the vortex is formed, you slowly pour the contents of the Relyvrio package into the swirling vortex. Allow the mixer to run for approximately 15 seconds, ensuring a thorough mix, and then let the mixture rest for about a minute. As a result, the drug will be fully dissolved, and drinking it seems to be much easier since it will be smoother and less bitter tasting. At least, that is what I experience.
You may want to give this a whirl (pun intended) to see if it helps you overcome the difficulties in consuming Relyvrio.
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I was diagnosed in 2018 and took Radicava IV until they came out with the oral version. I take riluzole, also. When I started on the 2 packets a day of Relyvrio I experienced alot of abdominal discomfort. So I returned to once a day. My PCP said today I should try one day on and day off. I’ll let you know how that goes.
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Hi, I was diagnosed in July 2022. Currently I am taking the three “R” medications, adding Relyvrio two months ago. With all the other medications (and vitamins) I take I am surprised there are not side effects. The Relyvrio tastes terrible of course, but chug is down and immeditaly sip another liquid or eat something to clear the taste. It does make me feel a bit strange for 30 minutes or so, hard to describe.
I am a Vietnam Vet and through the VA able to receive the three medications. I have slow progression and hopefully these meds are helping. My walking is slowly degrading but no falls yet
(my wife bought me a cane – am I the only one, but using a cane is like admitting defeat? – ya I know). I was surprised to learn, once I am unable to walk, the VA will discontinue two of the meds. I imagine cost is the factor and makes sense.Sorry to ramble… John
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When I went to 2 packs a day – I got a horrible headache, borderline migraine which I’ve never had. Currently taking 1 pack per day and still occasionally get day long, recently 2 day long, headaches where ibuprofen doesn’t help. I’m afraid to try 2 a day. Amylyx told me a lot of people can’t handle twice a day. There’s a lot out there on Relyvrio: my headaches, extreme fatigue, and breathing difficulties may just be the ALS but they could be side effects. I stopped taking Relyvrio for 2 weeks and noticed excessive saliva and facial / tongue twitches which I never had – it could have been withdrawal symptoms, but I chickened out and went back on it. Then these symptoms stopped. Wish we had placebo bodies so we could tell what does and doesn’t help.
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Reese, sounds like you’ve had a heck of a time with Relyvrio. I wonder, with all the bad flavor, trouble getting it down, and side effects… is it worth taking it at all?
Seems to me a lot of pALS struggling to take Relyvrio are putting their bodies through excessive and unneeded levels of oxidative stress that counteracts the benefits of the drug.
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I have been on Relyvrio since February with some side effects. Here is what helps me
For the taste the first 2-3 sips thru straw are bad tasting, after that not so bad.
Make sure room temperature and let sit for a while.
Use a straw
Distract myself by checking email or watching news
After dose drink some milk, eat chocolate or peanut butter.
Wash lips or coat lips with toothpaste, then brush teeth, as after taste lingers
listerine strip made it worse for me
Laugh and Sing in your head “staying alive, staying alive, da, da da…”
For abdominal cramps and loose stools I have tried:
Take medicine after meal, follow with desert
Add more fiber to diet
If symptoms too bad, go to 1 dose a day for system to settle, then return to full dose.
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Yes, I am on Relyvrio. Started about two-plus months ago. If you’ve ever taken TUDCA in a powder form then you know the taste. YUCK! They try to disguise the flavor with a sweetener but the overall flavor and reaction you’ll have you just cannot get away from. Good news though, it took me about 6 weeks to get use to the taste and now I drink it no different than a glass of water.
As for side effects, I do experience the common ones; stomach ache for about 15 minutes afterward, loose BM’s but I think I have figured it out, blood pressure went up about 10 points, and occasional mild headaches. I have not had any nausea feelings. The key is to take Relyvrio followed by a snack or meal. I thought for some reason I had to wait an hour like Oral Radicava and Riluzole to eat, but nope, I can eat after taking Relyvrio and my BM’s are mostly back to normal.
I did have to cut way back on my sodium intake and my BP is still borderline high now after taking Relyvrio for the past couple of months. They start you on once a day for three weeks to get use to it and then you go to twice a day and they stress you should take it at the same time every day.
Have any other questions, let me know.
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Hello John. With regard to the loose bm, you said you think you have figured it out. What did you do?
My husband pALS was on the Reylivrio starting4/21/23. His very loose bm started on 4/29/23. On the advice of his ALS doc we stopped the Reylivrio about a week ago and almost immediately saw the loose bm more or less resolve. The doc will soon advise us on next steps.
I would like to continue with the Reylivrio if we can control the loose bm or figure out the cause.My pALS also has FTD (frontotemporal dementia) so that may be a factor in his incontinent bladder and bm, although he did not have the loose bm prior to starting the Reylivrio. Best wishes. Leslie
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Hello Leslie,
For me it was the time period between eating and taking Relyvrio. When I first began taking Relyvrio I would wait at least an hour before eating. Then I realized there wasn’t a time period I needed to wait before eating after taking Relyvrio. For me that was a game changer for my BM and within a couple of days I was back to having a more normal BM.
Unfortunately, I was taken off Relyvrio for a couple of weeks due to my Blood Pressure rising. I’ve just been given the green light to resume. Which means I’ll have to go through the same process of my body getting acclimated to the medication, again, after I had finally gotten use to the taste.
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I’ve been on Relyrio for about 8 months (amongst multiple other meds in my “ALS cocktail therapy”). I took off-label SPB and TUDCA before starting. I have continued slow progression (-5 ALSFRS in 30 mos.) and no side effects.
My Relyrio “pro tips”:
> Use warmish water for better dissolution
> As 007 says “shaken not stirred” (I keep an empty water bottle handy for shaking) – much better and more consistent mixing
> Pour in glass and drink in two stages: 5 oz chug followed by 3 oz chaser with swirl to get all the yummy dregs
> One piece of Extra spearmint sugar free chewing gum after to knock out the bitter taste
> Optional: Give wife a big kiss and enjoy her look of digust as she gets a taste of the Relyrio remnants on your lips 😛
BTW it took about 3-4 months for me to “get used to” the taste — it went from truly awful to no big deal
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I am in a drug trial for the next 6 months so I can not take Relyvrio. Was excited when it first was being talked about. Was not so amused when they announced the price.
I’m curious to know if anyone will share after insurance what is the out of pocket cost for this drug?
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My disease so far is limited to my upper extremities. It has taken 2.5 years for the weakness and paralysis to progress down my arms and into my fingers. I am told this is a slow progression.
I take both Radicava oral and Relyvrio. I have very good insurance (a medicare advantage plan) and my copay per month for each med is $60.
I have no idea how to tell if the meds are slowing progress since I am a single data point and have no control in my little experiment.
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Thanks Jane. I suspect most people don’t have as good insurance coverage.
Good luck and wishing the best for you.
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