Relyvrio

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Mupstateny. The clinic only did the interview for the rating at the first meeting, September. Meeting in November they did not do it. Whatever.
 
If you have your office note, and you look up the instructions online for the version that was used, you guys could make your own updated estimate with the help of your old one -- if you feel like it. I read that someone remarked that Tom progressed quickly. That might be a way of making that progression clearer.

I thought of something I wanted to tell you about #2s (pooping). Before my first symptom of ALS, I had terrible constipation, tummy bloating and pain. Later, I saw a paper about PALS having gastric symptoms prior to first recognized ALS symptom -- just like me. I met with a gastroenterologist a couple months ago who said that it is a well-known fact that the muscles involved in peristalsis are also affected by ALS. The only solution he could propose was the Low FOD-MAP diet. I had followed that for more than half a year and I got heartily sick of it. So I ignored his suggestion. Fortunately, as my ALS became clearer, my tummy symptoms lessened gradually and now I'm 90% free of them (I guess that's a silver lining of sorts).

I wonder if someone would test a stool sample for you if you took one. I think a primary could order it.
 
Has anyone else been told that to get approved for Relyvrio that they needed to go off Riluzole. I have been getting Relyvrio from Allcare Pharmacy while CVS Speciality Pharmacy approves the prescription. We were told today that it's being denied because Riluzole is a duplicate medication to Relyvrio and that I've had to show Riluzole hasn't been beneficial. I'm close to calling the state insurance commissioners office to lodge a complaint. I think that they try to make it so difficult that you'll give up. That's not going to happen.
 
Lisa. Tom was on Rizuloe and relyvrio. Aetna medicare advantage approved both.

Riluzole is used to treat amyotrophic lateral sclerosis (ALS; Lou Gehrig's disease). Riluzole is in a class of medications called benzothiazoles.

Riluzole can be prepared beginning with the reaction of 4-(trifluoromethoxy)aniline with potassium thiocyanate followed by reaction with bromine, forming the thiazole ring.[15][16][17]

Relyvrio is sodium phenylbutyrate and taurursodiol.

They do not have the same active ingredients.
 
They also do not have the same mechanism of action. So taking both is like taking two different class of blood pressure medication. I am sure they have many patients on several different blood pressure meds and do not quibble unless someone is on two ACE inhibitors or something. Unfortunately the package insert for relyvrio says mehanism unknown even though it is postulated to reduce er stress ( sodium phenylbutyrate) and improve mitochondrial function ( TUDCA) presumably your neurologist can tell them this
 
We've explained until we're blue in the face that they're 2 different drugs. They put me through this for Radicava ORS even though I took it through infusion for 2½ years.
 
Well the insurance mantra is - dont pay, or delay payment.
 
Hopefully this will be resolved once and for all. My neurologist is doing a peer to peer so he can explain to them the difference between the drugs and that you don't take one or the other. It's so disheartening that they rake you over the coals for medication.
 
Yes, that's exactly what happened to my husband. Then a few weeks later it was approved- we believe his neurologist appealed their decision.
 
Synapticure will appeal and apparently they get fast results.

For me, it's CVS specialty the whole way through -- except I first had to contact the Relyvrio company. Did you skip that step by any chance?

I hope the snafu gets cleared up quickly.
 
No, I have my Amylyx support coordinator that has been with me since October. It should get cleared up with the peer to peer. Until then Allcare has been providing the Relyvrio until it gets straightened out with CVS Caremark.
 
How is everyone taking Relyvrio and riluzole? I’ve been taking them at the same time (with Nuedexta). I’m wondering if I should be spacing them out more. I asked the Amkyx support person and they said they weren’t aware of any reason to space them out, but i figured I would check to see if everyone else had heard anything different.
 
I'm not sure if it's necessary but I space my meds out. When I'm on my Radicava ORS cycle I take the meds this way: 7:00am Radicava ORS
8:00am Relyvrio
9:00am Riluzole

8:30pm Relyvrio
9:00pm Riluzole

In-between I take my supplements.
 
When do you eat with that schedule? Relyvrio is before food. Riluzole says empty stomach. I have been told fat free food is ok with riluzole and someone said their clinic said food doesn’t matter ( new research) but I haven’t asked my neurologist yet
 
I eat at 10:00am, 2:00pm and then at 5:30pm. It's hectic but it works for me. I never eat after 7:00pm
 
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