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A number of our forum members are currently on, or considering using Radicava (Edaravone) as a treatment to help slow the progression of their ALS symptoms. What has been your experience with this treatment? Are you continuing to see benefits?
If you are still in the consideration-phase of Radicava, what questions do you have for our members?
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I am a PALS, 69 years old, male, diagnosed in June 2016, spinal onset, on Radicava since October 2016. On assisted mechanical ventilator and with PEG feeding tube since Feb 2019. Wheelchair bound since 2017.On Radicava since October 2016. Having just overtaken the 3 years mark since diagnosis and considering my present condition, I would say iRadicava has probably helped: however I do not know what the outcome would have been if I had not been on Radicava.
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I took Radicava from November 2017 through November 2018. I had a port “installed” – that was an out-patient procedure. We had a nurse do port access (2x per 10-day course), but we did daily infusions and port de-access ourselves. No side effects. Didn’t notice any positive effects, so stopped after one year. I participate in the Precision Medicine Program at the ALS Therapy Development Institute: https://www.als.net/precision-medicine/ and have since November 2016. I have data about my condition and progression monthly since then up until now. I don’t see any difference between my progression for the year before I was on Radicava, the year I was on Radicava, or the more than a year since I stopped Radicava.
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I was diagnosed in Aug 2017. Symptoms began Oct 2016. I started Radicava in Nov 2017. I am still on it. I believe it has kept my progression slow. I have a port and go to infusion center. I think the outing also helps. Seeing the nurses and seeing other patients helps put everything in perspective. I recommend trying it. As one neurologist told me as I sought other opinions, I’d rather you not have ALS and be on Radicava than have ALS and not be on it.
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I was diagnosed in on July 30, of 2019, second opinion at MGH one week later. Started Radicava Sept 20, 2019.
Not knowing what the progression would be without it, I have only the statistics to go by. That’s good enough for me to continue. It helps that my insurance pays the freight.
I do think that when I’m in an infusion part of the cycle, that fasciculations are somewhat diminished & cramping happens less often. Not much else different.
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My boyfriend was diagnosed with ALS in April 2020 and began taking Radicava in May 2020.  He recently completed his third round of Radicava.  Although it is still early  on in the process, I have not noted much difference.  He since has began to use a breathing machine on a regular basis.  He had a port installed for the infusions.  I hope more people respond to this question as I  have never been a fan of medications and drugs  and would prefer my boyfriend take a more holistic approach if there is not going to be a considerable difference.
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I’m about 5 + years from first symptoms and 2 and half years from diagnosis. Have never taken Radicava . Neither my university neurologist nor my ALS clinic doctor recommended it. Thought it would have little effect. My progression is slow as I’ve lost a lot of use of one hand (where it started) but very little else so far. We are all so different it’s hard to say what’s right for any one person. Sadly there is apparently no access to actual effectiveness data. I don’t rely on  anecdotal opinions other than those people who do report feeling stronger on the drug than off and feel the difference.
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I have had ALS for 13-14 years and have not used Radicava since I’ve not read that it helps. I understand why some people would use it, since ALS patients will try almost anything regardless. Radicava is not approved for use in Europe since they stated it has no effect. Radicava is a political drug, in my opinion. Some people may have ‘a placebo effect’ while they use it. At US$1000. an infusion, I just don’t think it’s worth it.
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My husband diagnosed Jan 2020 at age 61, on Riluzole and started Radicava Mar 2020. His onset was upper limb. It’s hard to know if progression has slowed because there is no “control” for my husband. I administer infusions at home and deaccess port. Nurse comes 2x in the 10 day cycle to access port.
On a related topic we know that ALS manifests itself differently in each PALS, with some progressing faster and some slower—which makes it harder IMO to determine if pALS progresses slower due to Radicava–again there’s no ‘control husband’. Perhaps having an idea about where a pALS start on the slow or fast progression scale could be helpful.
That said, we read a study about an alternative to the ALSFRS and how a clinician could better predict if a pALS would progress faster or slower. The summary and info for that article is embedded below and also here: https://www.thelancet.com/journals/laneur/article/PIIS1474-4422(18)30089-9/fulltext Article discusses the ENCALS prognosis model (Netherlands) and you may be interested to have your clinician use it to predict where you are on the scale and maybe it can help guide your treatment—especially if you are thinking about Radicava. It may also help your decision to participate in valuable clinical trials that are available e.g. Healy Platform Trials. Maybe these are both topics for another thread. Blessings to you all–we are all in this together.
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That is an interesting research article Mary. Here is a link to an explanation by ALS News Today: https://alsnewstoday.com/news-posts/2018/06/14/prediction-model-help-determine-survival-prognosis-als-patients/
It’s too bad that we are unable to see the actual model (ENCALS) although I did find a helpful link here: http://encalssurvivalmodel.org/
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Duane – – add to that, Radicava has not been tested or used on patients who are already 5+ years with ALS. Since you are at 13-14 years (congratulations, by the way!) it would seem prudent to stick with what’s working for you. At 10 yrs with ALS, I’m doing that – – no need to rock the boat with unproven treatments 🙂
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