Medication - Newly Diagnosed In September

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dldugan

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One option given at my first ALS Clinic visit yesterday was Radicava infusion treatments. Comment and/or experience with the process please. If I do these treatments I will not be eligible for a couple of trials they are doing at the ALS Clinic.
 

lgelb

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Sorry to welcome you here, Indiana.

You might want to check out some of our Radicava threads:

Process

Results

Note also the Search link in the top menu.

Best,
Laurie
 

Nikki J

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It really depends on what trials and your presentation and progression so far.

The group that showed benefit in the radicava trial was fast progressing but early in the disease, still independent with ok breathing. They were also Japanese which may or may not matter. The closer you are to these parameters the more I would consider it.

Some trials are more promising than others as well. They are trials for a reason - safety and or efficacy have not yet been established. Later phase trials have more data behind them but those of us who have been around a long time have seen very promising phase three fail efficacy at the last moment.

Did you ask your neuro for their opinion? I realize it is a new relationship but they should be able to at least comment on the above points
 

dldugan

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Thanks, the neurologist at the clinic seemed non-committal. She said they only had 10 patients on the drug. Guess first thing I need to do is contact Medicare and United Health to see what is covered. I will continue to do some research. Also, it looks like I got the diagnosis at a more advanced age than most. I will be 77 next month. My age also disqualifies me for some of the trials.
 

TIANDB

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Hi dldugan. Worth to look on the Patients like me website also they have evaluations of people on most treatments and a few trials. I wish you well..
 

Doglady

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Hi and welcome. I’m 70 and although at first I was really interested decided against Radicava because of the time commitment and energy needed to get to treatments. Also it’s not a time limited treatment but potentially forever - unless you decide to stop. The results didn’t impress me either. Do what you think is right though and good luck.
 

lgelb

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The best place to look for efficacy data for drugs that have been studied in randomized trials, as has Radicava, is not on self-selected sites like PLM, which lack quality-controlled data.

Instead, it's wise to look at published reports of the randomized trials and their limitations, where you can get the benefit of multiple controlled trials and better understand who exactly was studied.

I have attached a backgrounder/roundtable with some well-known ALS clinicians. It certainly highlights that from what we know, starting it early as possible would be desirable, if you are going to try it.

From the available data, if you start it later and/or when you are more disabled than the patients in the trials, some slowing of progression is possible but you will have to take it quite a while before your results could be different than if you had not taken it at all.

Of course, not everyone will live that long, or want to. So if started in mid-late disease, it is more of a kitchen sink than likely to make a real difference.
 

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AliCat

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One option given at my first ALS Clinic visit yesterday was Radicava infusion treatments. Comment and/or experience with the process please. If I do these treatments I will not be eligible for a couple of trials they are doing at the ALS Clinic.
My mother is 71 and diagnosed in August. She hasn’t started radicava yet, so I can’t comment on the drug itself, but she has been told that Medicare will cover it completely as long as she goes to an infusion center as opposed to having it done at home. She definitely plans to take the drug and should be starting soon.

She has also been seeing results taking Nuedexta. She is bulbar onset so she is having issues with speech and swallowing. She’s been on the Nuedexta only since this past weekend and has already noticed improvement in speech, swallowing, and saliva.

So sorry you have to be posting here. Take care.

Alison
 
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