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I’m not taking it, but am monitoring what others are saying about their experiences.
So far, most of the comments on social media are complaints about the extreme bitter taste (twice a day!) Many are suggesting coffee as a chaser.
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I took it for one month but stopped due to strong weakness all over my body .
Couldn’t swallow it without gagging and throwing up.-
Hi, I am Susan, I have been on Radicava for 8 months, I started RELYVRIO Dec 31/2022. So just a few days ago, happy to report zero side effects, it is extremely bitter tasting, but it’s only 8 oz, my wonderful husband puts it in a large glass, so it seems like less, I chug it down, don’t hold your nose, it makes it worse! Then my wonderful husband puts a squirt of honey on my tongue, I hold that and then have 2 cups of coffee, done! I have a very strong Faith, thanks be to God, I am given the opportunity to have this medication! My heart and love to all who are affected by this horrible disease!
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My husband was diagnosed in Feb. 2022. He started taking the cocktail off-label (SPB/Tudca) in March and he started the Relyvrio RX last month so he has, in essence been on this almost from diagnosis. He started with a score of 48 in Feb. fully functioning. We are almost 1 year from diagnosis and his score is still 48. He also takes Oral Radicava for about 3 months now. Many other supplements in trials such as high dose oral B12 and another called BASIS by Elysium Health. Tons of Theracumin. Other than muscle wasting in his arms (he is a body builder so this is pronounced) he seem to be progressing at a snails pace which is what we all want right? Next to a cure of course! As far as the taste goes, yup.. it is horrid.. beyond horrid. My husband says it tastes like a mixture of salt water and Lysol. I don’t know why they can’t put it in capsule form like it was when we got it off-label. I don’t know if his slow progress is due to the drugs or just his natural course, but we are not taking any chances and he will stay on everything we have him on until something even better comes along. We will not go down without one hell of fight! My thoughts, prayers and hopes go out to all effected by this nightmare.
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My husband has been on Relyvrio since diagnosis in September 2022. There have been no side effects thus far. We’re trying to get Radicava approval from our insurance. It’s been appeal after appeal. Some of these Medicare advantage plans are horrible. His neurologist want him in this medication but insurance will not budge. But we will not give up the fight to get a drug that may slow the progression of this unforgiving disease.
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Hello,
I was diagnosed the same time as your husband. I chose Plan d with Medicare Blue Shield, Enhanced. My understanding is once the insurance company pays out $7,000 the insured are on catastrophic insurance. The cost would be $3,500 for one month than ~$650 thereafter. This is my cost for each drug, Radicava and Relyvrio, because my first month was in December before the clock was reset. So I will spend ~$22,000 in Y1. It’s really unfair and me and my wife have to change our lifestyle (put politely) so I can have the hope these drugs are suppose to provide. The income limits for financial support, set by the federal government, state government and grants are very unrealistic for ALS patients. I wish you and your husband the best and happy to report any new learnings on the cost of these drugs.
Best.
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My two cents, contact https://www.radicava.com/patient/journeymate/
You might be able to get $!5K/year applied to Radicava.
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Absolutely, I got the 15k grand, but I have no co,pay on any of the 3 main ALS medications,
Radicava ORS, RELYVRIO and Riluzole. I have Aetna Medicare and they are great ???? non of the medications are slowing my progression, diagnosed with ALS in December 2021. I have lost all function except arms head and neck, right arm and hand are starting to decline! -
My brother has had ALS for 3 years and I SO looked forward to the approval of Relyvrio which seemed to take forever. Also, the pill form of Radicava was great…….I read about many people using these and I wonder how they afford it….both are cost prohibitive for my brother…I’ve read that the annual cost for Relyvrio is anywhere from $150k to $171k (approximately) Maybe I don’t quite understand it but I would like to know what insurance companies actually pay the brunt of this, if any. These prices are listed as “cost-effective” and I’m not sure what that means either. I would appreciate some help on this.
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My husband has been on Relyvrio since diagnosis in September 2022. There have been no side effects thus far. We’re trying to get Radicava approval from our insurance. It’s been appeal after appeal. Some of these Medicare advantage plans are horrible. His neurologist want him in this medication but insurance will not budge. But we will not give up the fight to get a drug that may slow the progression of this unforgiving disease.
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<p style=”text-align: center;”>My wife was diagnosed with Bulbar in July 2022. Takes Relyvrio through tube with no side effects. Prior to tube, the taste almost made her quit the med. She also takes Radacava, Nuedexta, and Riluzole. Just added Glycopyrrolate for saliva. Eating, talking, swallowing impossible but muscle strength and breathing is ok.</p>
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Hello Dick,
My husband was diagnosed with Bulbar ALS Jan. 2020. He is on all the same medication as your wife: Radacava, Nuedexta and Riluzole. We’ve just added the Relyvrio about 1 month or so. Saliva has been a big problem to control, but he has been on transdermal patches for at least a year.
I’m glad to hear your wife is doing as well. My husband also still has enough strength to putz around the house some. His arms and neck muscles are giving way however.
My big question: He has fairly recently been giving off a fairly pungent odor on his person. I don’t know whether this comes from all the drugs he takes, or the drooling aspect, or just part of the disease process. Have you heard others with ALS complaining about this odor issue? He does shower every other day so cleanliness is not the cause I don’t believe. I’ll just throw this question out, any thoughts would be appreciated.
Thank you and God Bless !!
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I started taking it 3 days ago. I had been warned about the terrible taste, but it has not been as bad as I had feared. I swallow it quickly and then eat some flavored yogurt, and that seems to clear out the bitter flavor. No bad side effects so far.
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I am taking relyvrio and just started on the two a day. It is simply horrid and makes me shudder involuntarily.
The pharmacist at Optim suggested Listerine strips before and after which helps a bit.
Drinking all of the liquid at once makes me feel nauseated for a few hours after. And the taste lingers.
Is there a way to contact the manufacturer and question about the gel cap possibility? I have wondered that myself.
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I have been on Relyvrio (BTW terrible name choice IMO) since about a month. (I am also on Radicava oral and Riluzole since my diagnosis in July 2022)) . I have not noticed any side effect from Relyvrio. I do combat the truly terrible taste with chasing it with a small glass of LEAP 2befit (orange) in the evening and in the morning with coffee thereafter. That does take care of the bad aftertaste in my case immediately.
I wondered about the need of it to be in powder form. I am working in drug discovery and biotech and I wonder if it has to do with levels of those two medications in blood to achieve maximum effect. In capsule form the uptake into the blood stream from the stomach would be slower. I will try to get this confirmed by Amylyx and post it here.
Also as told from my doctor and of me being a chemist myself, the OTC version of both medications have to be researched carefully in regards of their quality and purity. So make sure it is a reliable quality and source. (e.g. GMP manufacturing etc.) But if in the unfortunate case your insurance does not cover Relyvrio, which sadly has also been mentioned here in the post as well, taking the OTC versions is an absolute and recommended alternative.
For those struggling with approval please consider reaching out to the Amylyx care team. Together with your doctor, insurance and the care team you might get it approved and also can sign up for full copayment coverage. Link here: https://www.amylyxcareteam.com/
Wish you good luck and keep up the fight!!
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Thank you all—very interesting; but how has all this gone with insurance & cost wise—I’ve seen it can be average $700 monthly WITH insurance!
Plus, it seems it is not a stand-alone item…that it will co-exist with Riluzole & Radicava? AND, finally, for those for whom it needed to be stopped—were you also persons who could take—or reacted badly the other forms (Riluzole & Radicava, infused or oral)? A new neuro really did a sales pitch, but had no answers to these questions when I asked. Im not willing to experience feeling worse…especially since my legs have lost function and getting to a bathroom is a major effort experience. Thanks for help here!-
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We just checked out-of-pocket cost with Humana. Get this: Over $8,000 a month for Relyvrio! And what does it buy you…they say maybe a few more months at the end, i.e., the worst part of the ALS progress! With my year-old bulbar-onset ALS diagnosis, I’m as scared as anyone with ALS, I guess. But, golly, I don’t know if I really want to sign up for it. By comparison, Riluzole—which I take— is cheap. About $70/month OoP; and Radicava—which I also tke—is, essentially free after JourneyMate helps out!
But I’m open to hearing why I shuod spend $8,000+ each month for promises of delayed “progress”.
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I want to communicate 2 things.
I use Blue Shield/Medicare D
My cost is a one time out of pocket per year $3,500 and then $1,016 a month. The first payment met the deductible allowed by a new law from Biden. They still can charge 5% Of their cost each month to the patient.
In 2024 they are reducing the out of pocket maximum 50%. Additionally, they are doing away with the 5% monthly fees. Unless congress tries to overhaul the law.
Best.
https://www.nytimes.com/2023/01/14/health/medicare-drug-prices.html
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I spoke to a specialty pharmacist and asked about the gel caps. She suggested that the compounds need to be fully dissolved in water before they reach the stomach, in order to be absorbed.
I also enquired about the fact that one shouldn’t take antacids containing Aluminum while on Relyvrio. She suggested that the sodium ion in the sodium phenylbutyrate could get exchanged for Aluminum ion and make a different compound, aluminum phenylbutyrate.
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Very good point about the antiacids. Aluminium and magnesium salts of phenylbutyrate might be very insoluble. They often are.
Suzanne, are you taking any medication for your lack of gallbladder. usually this is the case. It might make sense to discuss with your PCP. Eventually you can reduce this medication now and see if the diarrhea gets better. But don’t change without consulting your PCP or ALS doctors. -
After a bad experience with Tudca, I started Relyvrio yesterday with some trepidation. Tudca instantly started cramping & diarrhea, but so far I’m okay with the Relyvrio, despite not having a gallbladder. I also take Radicava & Riluzole. My liver enzymes are elevated due to Riluzole so it will be interesting to see what effect Relyvrio has.
Approval took about 8 weeks. The worst part of the whole process has been dealing with Accredo, the specialty pharmacy. I’m supposed to have co-pay assistance from the drug company, but it still isn’t going through. ????
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My partner (pALS) has been on AMX-0035/Relyvrio since July 2022 as he was in the expanded access program. He complains of the terrible taste but has no side effects, chases it with coffee in the AM and a bourbon and coke in the evening, lol. He is also on Riluzole, but I give him a tablet at 6pm and then another one at midnight, as taking the Riluzole any earlier makes him feel exhausted. His neurologist, Dr. Bedlack no longer recommends the Theracumin regimen that my partner has been on since 2020. Dr. Bedlack said the recently concluded studies did not show Theracumin to be effective for ALS. I still give it to my pALS though, as Theracumin has lots of other benefits! My pALS did not want Radacava when it was an injection form. When we asked about the oral form at our last ALS clinic visit, Dr. Bedlack did not recommend it as he said it didn’t show to be very effective except at the very early onset of ALS (my pALS has had ALS for 4 years now.) My pALS fortunately has slow progressing type. He has lost most of his upper limb function (can move his arms to about waist level but has very little grasp function left), his gait has been affected by muscle weakness, but he can still walk small distances and climb stairs (albeit slowly). But honestly, with all the various supplements and drugs he has started and stopped over these past 4 years (he was in the CNM-AU8 trial as well), we haven’t seen any have any real effect in slowing down what was already slow progression from the beginning. (Yet I will keep spending hundreds of dollars every month on these myriad of supplements because I can’t give up hope!)
Dr. Bedlack does recommend N-Acetyl L carnitine (1 g 3x a day) and L-Serine (30g a day). Both come in powder format that you can mix in with ice tea or OJ and it adds a slightly sweet tart taste, but my pALS doesn’t even notice I’ve added it in, lol.
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Bevan, I noticed your comment about N-Acetyl L carnitine (1 g 3x a day) and L-Serine (30g a day). Is N-Acetyl L carnitine different from Acetyl L carnitine (without the N-), which I can find in bulk on Amazon. I tried the pills but can’t swallow them anymore. How do you measure 1g or 30g L-Serine? Can you mix L-Serine with one of the doses of N-Acetyl L carnitine? Thanks, Lee
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Hi Bevin,
Thanks for sharing the info about you and your partner’s journey thus far. I also see Dr Bedlack and drive down every three months from NJ to see him. I’ve been on L-Serine (BTW Jo-Mar Labs offers a discount to ALS patients) for about 5 months now but not N-Acetyl L carnitine. I will bring it up next month at my visit. I was diagnosed with bulbar onset in Sept. 2020 with symptoms starting in Dec. 2019. I have been experimenting with a myriad of supplements that include tudca, theracucmin, alpha lipoic acid and the list goes on. I do take Riluzole, Nudetxa, Glycopyrrolate. So far considering the time in, I not too bad off with still having the ability to walk and drive. My speech and swallowing are a major issue now along with my loss of hand and arm strength, but tomorrow I have an appointment to discuss a feeding tube to halt my weight loss. Blessings to all on this thread, God loves us all
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I started relyvrio about a month ago. Good results so far! I had been on SPB and Tudca for 1.5 years in pill form and figured this would be more effective and easier to drink.
While I find it slightly more effective; the drink vs pills is a toss up. Bitterness is not bad and can be diluted but the pills seemed easier, I find.No side effects noted.
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I started taking Relyvrio (AMX0035) as a participant in the clinical trial since March 2018. I have not experienced any of the side effects that are listed for the drug. Yes it has an extremely strong taste. I have found that letting it sit in lukewarm water for around 30 minutes gets it to dissolve more thoroughly. I usually take it prior to breakfast and dinner. A bit of peanut butter, for me, helps to get the taste out of my mouth as well. I am on Radicava Oral, as well as riluzol. At my last ALS clinic my neurologist said there has been no change in my condition or decrease in my ALSFRS in the last 3 years.
The VA has just established the criteria for prescribing Relyvrio and, as I understand, will fill prescriptions it at no charge to qualified vets that are in VA Health.
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Relyvrio was exorbitantly expensive for us. Though my PALS is on Medicare, with AARP United Health Care supplemental, the copay was out of sight for us. Because we have savings, and make a small income each year from our financial status, we don’t qualify for any help. Our neurologist at Penn medicine ALS center of excellence, advised us against spending money on Relyvrio. She advised us to save our money, and use it for home health care. She said- no return on investment.
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Did you look at https://www.healthwellfoundation.org/? There are income limits ($98,000 for two people in a household) but could be an option. Agree that given no cure, spending $$$$ on treatments that may have only marginal benefit is a challenge.
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Suzanne, My doctor at Columbia initially prescribed the compound of Sodium phenylbutyrate and Tudca (both in capsule form) while waiting on FDA approval of Relyvrio. No side effects to report; no taste issues with capsule form. Total cost was around $900 per month, which is way cheaper than Relyvrio direct. I received it from a specialty pharmacy in NJ. Maybe your neurologist can write you a prescription that way. Tudca is a supplement available online.
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Thank you everyone—very helpful information to be gleaned from the entire conversation. It does indeed seem that the ‘other R’s’ meds are in use by those on the ‘new R’ med to slow progression. It was also helpful to learn that the fall down fatigue & extreme bowel activity I experienced in the 1st 8-10 weeks of taking Riluzole after diagnosis were not totally unique to me (although I do have a gall bladder). My PCP did learn months later that I had no good gut bacteria at all, so the bowel issue is resolved as long as I take a specific Ortho-spore supplement 4x day . Thanks again pALS.
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I started Relyvrio three weeks ago. Aside from the bitter taste I let it set for 30 min or more then drink it down. I’m also taking Riluzole and Radacava ora which my doctor wants me taking all three meds. I was diagnosed March 2022 in which I was loosing upper body strength. When I first started taking the Riluzole I felt like I was getting weaker and still feel this is happening taking all three meds. Maybe my symptoms are just progressing more rapidly. Does anyone else feel any of the drugs are making you feel weaker?
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Hello Mark,
Yes, that is one of the many mental gymnastics we have to go through with this dis-ease. Is the medication making my symptoms more pronounced or is it the progress of ALS? Dr’s are probably correct in that ALS effects everyone differently. I am going to run my own test in stopping part of my treatment if weakness occurs to try and figure out which drug is causing the issue. So far this weakness symptom has been off and on, so I am sailing ahead taking the 3 r’s. Best to you.
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Hi. Thank you to everyone for replying to my question. I receved my Relyvrio yesterday and am waiting to start after the weekend because I was not sure of side effects. I took Riluzole for 2 months but stopped because I started having festiculations jumping all over my body plus fatique and knee pain. I startedRadicava ORS . My balance got really bad after the first week so that I was holding on the walls so as not to fall. I didnt know if it was the meds or progression. I stopped taking it after I spoke to pharmacist who said reactions usually occur in the first week. So thus my trepidation beginning Relyvrio. The pharmacist suggested to swish mouthwash before drinking it and suggested milk and a big meal afterward. He also said bananas were good. He said fruit juice would make taste worse. Also if side effects like nausea, try to stick with it the first 3 weeks and they should get better. So ???? here’s hoping.????
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Patty, I hope you have good luck with Relyvrio. I’ve taken it for a month and noticed no side effects. I’ve found that mouthwash before and something to eat right after are helpful (bananas, yogurt and pita chips all work for me). The best advice I got was to drink it through a straw. It goes down more quickly and must skip some of the bitterness taste buds. I also put it in a jar with a lid so I can shake it up and better dissolve the powder. Good luck!
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I started on the Relyvrio Nov 10th and have been on the Radicava ORS since about June and the only problem I have is keeping them separate and a time to take both of them through my feeding tube. I’m trying to up my calories and my doctor gave me a Botox injection to cut down the mucus/saliva yesterday so that should help me to consume more calories every day.
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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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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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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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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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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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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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