[John]

Hello All! I’ve been on oral Radicava since January 2022 as part of a study which is now being suspended. The Radicava I take must be refrigerated. The study I was a part of was to find any efficacy for a two dose daily regimen. The study found no benefit to the two dose regimen as compared to the single dose regimen. Not sure which I was on given the study was a double blind study but I know I was getting at least a single dose.

Like some have said, who knows if it works but I’ll continue taking it. Can’t hurt.

I am also doing the 3 R’s. Been on Riluzole since May 2021, oral Radicava since January 2022, & Relyvrio since March 2023. The only one I’ve had any side effects is with the Relyvrio beyond the taste.

[John]

I just finished one up at Mayo Clinic last week. My ALS Clinic typically consists of meeting with the Nurses, OT, PT, Neurologist, Social Worker, Speech Therapist, Dietician, Psychologist, and complete a PFT. My ALS Clinic typically takes about four hours or so to get through starting around 9am.

Each discipline involves a discussion and ideas to help me as well as getting data to compare against past ALS Clinic results.

The OT goes through a series of strength tests for upper body to include a grip test with a dynamometer and a pinch strength test with my thumb and index finger.

The PT gets me up on my feet and I generally walk to the door and back starting from a seated position and ending with a seated position with my rollator. They time me for this test. I use to do the Sit/Stand/Sit test for number of repetitions in 30 seconds but I can’t stand without assistance any longer. PT also checks leg strength from my feet to my hips.

Speech Therapist has me do repeating melodies mimicking the speech therapist and then I read a passage for clarity, tonality, inflection, and speed. They also watch my swallowing and listen to my speech in conversation.

The Social Worker and Psychologist talk about life in general and how I’m coping with ALS as well as discussion about my family and friends coping with my ALS. Occasionally they will bring in someone from Palliative Care for end of life discussions.

The Dietician discusses my eating habits, protein intake, weight, etc.

The Neurologist does an exam to include strength tests from feet to head, checks my peripheral nerve sensations, conducts an ALSFRS-R as well a the El Escorial exam. Then we talk about possible treatments and clinical studies. I am just wrapping up with the AO4 Oral Radicava Study and looking to get into the TARGET ALS Study.

Then there is the PFT to determine my lung volume, my MEP and MIP for lung strength. Occasionally, blood draws are a part of the clinic for AST, ALT, B12, CPK, and the new one; NfL or Neurofilament Light Chains.

And then, about 1-2pm I get to go home…Yay!

[John]

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.

[John]

My first symptom was my right foot weakening to a drop foot. Didn’t really notice until I was out playing soccer one afternoon and went to turn and fell down. Thought is was just my age showing and needed to get back in shape but it happened again. Then I went to strike the ball with my right foot and there was no power and my foot was more akin to a wet noodle. I was always pretty fast on the pitch but this particular day I felt as if someone was holding me back and my speed was way off my norm. I reached out to a neurologist in my area whom told me it was a pinched nerve between my L4 and L5 after an MRI, X-Ray, and Nerve Conduction Test. But, the symptoms continued to worsen until I reached out to Mayo Clinic a few months later. They put me through every imaginable blood tests, LP’s, MRI’s, X-Rays, Nerve Conduction tests, you name it, I did it until the only conclusion was being diagnosed with ALS. Bummer! Since then the weakening has affected my right and left side from my hips to my feet. I can still walk with a rollator but it’s not fast.

[John]

I was diagnosed in May 2021. I have been volunteering in the A02 Oral Radicava study since January 2022. My upcoming visit will be my last visit for the study.
I am of the same mind that research is my contribution to assisting the clinics and medical staff to finding a solid treatment and/or a possible cure. I’ve been poked and prodded, MRI’s from one end to the other, contributed to two lumbar punctures, multiple type of blood tests, etc.

When this study is done I’ll be looking for another to help out where I can unless I get in to the open label study of the Oral Radicava.

My best to all and keep up the good fight!

[John]

I don’t know if I am fortunate or unfortunate when it comes to radicava treatment. I was diagnosed this past May with ALS.

I say unfortunate because my insurance company would not approve me for the in-vane radicava treatment requiring additional information regarding my diagnosis thereby delaying treatment for seven months. So, I was not treating my ALS with anything more than Riluzole, TUDCA, and a few vitamin supplements for seven months following diagnosis.

Fortunately, by the time insurance was ready to approve the treatment (approximately seven months later) I was able to enroll in an Oral Radicava study which I have been participating since January this year. The downside was I had to give up the TUDCA to participate in the study. I actually felt the TUDCA was working. Could simply be my imagination though.

The study I am participating is a double blind study with one group receiving a dose of radicava and a placebo and the other group receives a double dose. The study is focused on what if any benefit twice the typical dose will have on functionality and slowing progression. What I can say is the oral suppression is taken once daily, typically in the morning, and mine does have to be refrigerated. The medication requires at least 8 hours fasting prior to and up to 2 hours following with no food but an 8oz glass of water is okay. Lol! What I can’t tell you all is whether or not it works or doesn’t work. I have no idea if I am in the group with a single dose and placebo or in the group with a double dose. But, I have not experienced any side-effects and it doesn’t taste that bad.

Cheers All!

 

[John]

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.