Needing help to figure out edaravone utility

lynncm

New member
Joined
Mar 14, 2024
Messages
3
Reason
PALS
Diagnosis
02/2024
Country
US
State
CO
I was diagnosed in Feb 24, limb onset after about six months of symptoms. I was placed on riluzole and methylcobalamin (both still on) and Relyvrio (obviously now stopped). My ALS-specialist neurologist said he would put me on edaravone if I wanted, but he would not recommend it. This is because he thinks the data are incredibly weak for this drug. I have very good insurance, so cost is not the issue. I have taken his advice and not started the medication, but I've read some of the studies and wonder if I've made the right choice. Has anyone else been given this advice by their ALS specialist? What are your thoughts here?
 
I didn’t want it when it was first approved because it was iv and any benefit was outweighed by the treatment burden. As you know it is now oral so the only burden is the possible financial one depending on insurance and any grants. My neurologist did revisit it then but she didn’t think it was worth it for me. I know she prescribes it for others

The only positive trial was in a subgroup in Japan. They were recently diagnosed high functioning with decent breathing but fast progressing. Since I am not recently diagnosed or fast progressing I didn’t feel I had much in common with that group. Of course the argument is that others benefit too even if not demonstrated in a trial

It is concerning to me that a slightly different version failed last year in a bigger trial in Europe. MT Pharma says the drug was significantly different but it didn’t seem that the difference was that great

There are absolutely positive anecdotes but it is impossible to know if these people are truly benefiting from edaravone, something else or simply hitting a plateau naturally.
 
I have been on edaravone (Radicava) for over 4 years. I started by taking via infusions than switched to the oral version when it came available. Has it helped? I can't answer that but I will say that my progression has been slow. My husband feels that it has kept me going.

If you have commercial insurance there is help with the monthly co-pay through an organization called Journeymate. For all the time that I've been on this drug, I have never paid anything out of pocket.
 
My PAL’s Neuro had basically the same opinion and implied it was not worth the side effects many of his patients experienced on it and eventually stoped taking as a result. He now only takes Riluzole and Methylclobamin injections (at our request not doctor’s suggestion). How much do you take if you don’t mind sharing.
 
My husband (now deceased) was fast progressing, but I do wonder if stopping Radicava ORS contributed to an even faster decline at the end (I.e. he was doing “better” when he was on it because when we stopped it he went downhill really really fast). He was on radicava ORS from September or October 2022-September 2024.

He didn’t complain of any bad side effects with the medications that he was on (we also tried relyvrio from time of approval until it was pulled from the market).
 
Jam - it’s a set dose. You take 5 mL every day during the cycle when you’re taking it - 10 out of 14 days on and 14 days off. Part of my routine was writing down the days on and off in the calendar each month :)
 
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Marie, why did you stop it?
 
Lynn- how much Methylclobamin are you taking & how often?
 
Jam, because of his respiratory decline and values. We both were like well what’s the point. However, once we stopped it he began declining MUCH faster and I wonder if it was keeping his limb progression “stable” (until we stopped it).

I don’t know if it was the nature of the disease at that point or did stopping the Radicava ORS contribute to a faster decline. Edited to add - maybe he actually stopped it in August 2024, I don’t really remember.
 
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JAM-- I take methylcobalamin 50 mg intramuscularly twice a week, which was the dosing in the most recent Phase 3 study out of Japan.
 
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A word of caution with Journeymate. With Aetna insurance, the funds from journeymate do not apply to your copays or deductibles. This is not the fault of journeymate, simply greed from the insurance company.
 
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