Relyvrio improvements anyone?

[One2022]

Hi all,
I know it might be too early to ask, but have any of you slow/slower progressors see any improvements using Albrioza or Edavarone yet? I was suggested to start one for my ALS-like MND. I will be meeting with ALS clinic soon but wanted to hear some firsthand experiences also.

thanks!

 

[Nikki J]

I can’t take relyvrio but am currently taking tudca. I have had very marginal improvements ( mainly one shoulder is slightly stronger) but have been stable for over a year which I consider a win. My neuro told me she had another patient with tudca improvement. Additionally at the relyvrio ADCOMM there was someone who had a little improvement

Of course your disease mechanisms may respond differently but I had you can get to try it and see results

 

[One2022]

Thanks Nikki for your reply! I'm glad to hear you had some improvements with the meds. I'm not familiar with Tudca but now that I read about it seems to shows some slow down. I guess anything that can help is great!
So far my choices are Albrioza or Edavarone. I will ask about Tudca to see if it's something I can try too.
Those big meds kind of make me a bit nervous about side effects...

 

[Nikki J]

Tudca is one of the ingredients of relyvrio It is tudca plus sodium phenylbutyrate. Sorry I did not make that clear. In Canada as here it is available as a supplement. Albrioza ( relyvrio) uses medical grade tudca which is available in Europe.

You can take edaravone and Albrioza both if you can get them covered. Albrioza can have gi side effects. I think edaravone not so much

 

[MupstateNY]

no idea if my als meds are helping.

neuro said relyvrio is the most imp.

there is a reliable way to find out what side effects one will get -- try the med and see.

only make one change at a time.

 

[Marieb425]

I’m also not sure if the meds are helping my husband, but I don’t know that he’s a slow progressor. He’s been on all three R medications since around 11/2022. He has continued to have bulbar ALS progression happening throughout that time frame, however he hasn’t had a spread through the rest of his body yet (only in one arm/hand) - was limb onset originally).

He did have some minor upset stomach with starting the Relyvrio (but nothing severe or bad enough that he had to stop the medication) and we ended up cutting all dairy out of his diet which really helped.

Edited to add - I remembered that he started Tudca sometime in September. I read about the potential benefits and read about it on here. So he was on on Tudca first for awhile and then started relyvrio once it was approved and we could obtain it.

 

[Douglasd]

^^^ I have had bulbar since last year. I’m also on all 3 R. Mostly and mostly feel good but speech is declining a bit and only somewhat leg spasms at.night. Gabipenton introduced in Fed helped tremendously w spasm. I am still strong and in many ways better than 6 months ago. It’s a pain in the butt trying to work around denials for Nudexda which helps w inappropriate laughing smiling and hopefully speech. If you have bulbar let’s chat and advocate and strategize f als! <email removed per our policies, but PALS are free to PM Douglas>

 

[PiratesWife]

We are experiencing the same problem with nuedexta and relyvrio not being prescribed by our neurologist. Some will. Very frustrating. I’m debating stopping the albrioza/relyvrio and just doing the Tudca so we can do the nuedexta. It appears it’s the interaction with the sodium part of the relyvrio.

 

[PiratesWife]

Also slow progressing diagnosed Jan 2022, bulbar onset, still walking talking eating driving but with some weakness and problems in hands/arms. Been on the relyvrio (called albrioza here in Canada) for a year and the Tudca before that.

 

[jbergin]

My wife was diagnosed with bulbar onset in March of this year - speech problems dating back to Aug/Sept 2022. On all three R's as well as Nudexa. Pretty early on for us and her progression seems to be slow. IMHO it is hard to say if the drugs are slowing the train down when you don't know how fast the train is running, but we have only seen a marginal decline in speech and swallowing since diagnosis - noticeable but marginal. That said, the Nudexa seemed to help with speech. We saw an improvement about 3 weeks after starting it.

 

[lisa g]

I am also on the 3 r's. We really don't know how they're working since we don't know how we would have progressed without them. I'd like to think that they're helping. I will share that my last clinic appointment was in January and had my next one last week. That was 6 months in-between appointments. In that time not only didn't I lose anything on the ALS/FRS score I actually increased it by 2 points so I'm hoping that it's a result of the 3 r's doing what they're supposed to.