Old 09-17-2018, 05:30 PM #1 (permalink)
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Default Radicava results

This thread was closed after one month. I don't know why but I'm sure there's a good reason?? There was very little results on this thread, as i expected. Radicava good news is hard to find. There's a lot of profiteers pushing this..........ALS Association news has this drugs add's on there news sites..$$..
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Old 09-17-2018, 05:33 PM #2 (permalink)
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Default Re: Radicava results

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Old 09-17-2018, 05:34 PM #3 (permalink)
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Default Re: Radicava results

If a thread has no added posts for a certain period of time, it will be closed automatically. Not sure the length of time it needs to be inactive, but it's an automatic forum function.
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Old 09-19-2018, 09:54 PM #4 (permalink)
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Default Re: Radicava results

I believe you had quite a few replies to your other thread about Radicava, but I can tell you our experience. My husband has been on it for about a year now and has only gone down around 1 point on the ALSFR scale. He was at 45 last May and to date is at holding at 44. Radicava is not supposed to improve ALS, nor has it ever claimed to do so. It is only supposed to slow down progression. We are so happy that he started it that we will keep going until it is no longer beneficial to continue.

We have clinic on the 10th, so I can update further and let you know how he is on the ALSFR.

Take care and have a good evening.
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Old 09-26-2018, 09:47 PM #5 (permalink)
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Default Re: Radicava results

Quote:
Originally Posted by Bestfriendstilltheend View Post
I believe you had quite a few replies to your other thread about Radicava, but I can tell you our experience. My husband has been on it for about a year now and has only gone down around 1 point on the ALSFR scale. He was at 45 last May and to date is at holding at 44. Radicava is not supposed to improve ALS, nor has it ever claimed to do so. It is only supposed to slow down progression. We are so happy that he started it that we will keep going until it is no longer beneficial to continue.

We have clinic on the 10th, so I can update further and let you know how he is on the ALSFR.

Take care and have a good evening.
Hi Bestfriendstilltheend,

I am happy to hear that your husband has progressed so slowly since starting Radicava. Could you tell me what is his administration schedule? Radicava has been studied and marketed with administration in 28-day cycles (cycle 1 involves receiving 14 days of treatment followed by 14 days off, with subsequent cycles alternating between treatment on 10 out of 14 days followed by 14 days off). However, when we ordered Radicava from Japan for my father, the neurologist recommended 7-day cycles with treatment on 5 out of 7 days.

Thank you in advance and good luck!
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Old 09-26-2018, 11:56 PM #6 (permalink)
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Default Re: Radicava results

Hi ALS93,

We do the cycle that was recommended from Japan, which is the one that you outlined; not your neurologist's suggestion. However, as long as you get 10 days of infusions within that 28 day window, you're good to go. For example 5 days on 2 days off, and then another 5 days on and a 14 day break, then start again. You're good as long as you get those 10 days of infusions in.

I hope that makes sense.

Good luck!
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Old 09-28-2018, 04:31 PM #7 (permalink)
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Default Re: Radicava results

Hi there..I have not posted in a long while but have checked in periodically ..so happy to see some recent posting regarding Radicava ..my husband was put "on the list" at the time of his diagnosis but was told by his clinic not to get his hopes up because of the cost and that the insurance would not want to pay for it. August 9 he got the call ! He completed his first 14 day cycle on Friday 9/21 and will start his next 14 day cycle on 10/5. On Tuesday l phoned him and the voice on the other end was someone I had not heard in a long while. I have since then let his voice go to voice mail just to listen to him speak to me a bit more clearly�� .. hugs to all of you,
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Old 09-28-2018, 10:17 PM #8 (permalink)
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Default Re: Radicava results

Hi geneice - are you saying he has a measurable improvement in his speech? I can't even begin to imagine how that would feel.
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Old 10-01-2018, 01:34 PM #9 (permalink)
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Default Re: Radicava results

glad to hear some results.
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Old 10-01-2018, 02:36 PM #10 (permalink)
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Default Re: Radicava results

I've been on Radicava for 1 year now, there is no way for me to know if it's helping slow the progression. When I started, I was walking with minor difficulty. As of today, I can no longer walk without a walker, and my left hand has become very weak. Swallow/breathing seem unaffected, but I sometimes have a hard time coughing up phlegm. I go to the multidisciplinary clinic at USC this friday, curious to see what my score will be now.

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Old 10-17-2018, 04:07 PM #11 (permalink)
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Default Re: Radicava results

Update:

We just came back from the ALS clinic and my husband is still slowly progressing. His ALSFR did go down to 41, but that's not bad considering he was diagnosed May 2017 and symptom onset around July 2015. After having been on Edaravone/Radicava for a year, we feel it's slowing progression.

We have what is called a special needs trial (or something like that), where if a medicine is truly helping someone, that someone can get 9 months free. My husband's neurologist is impressed at how slow progressing he is and has put his name in for a 9 month supply for free. This is really great news.
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Old 10-17-2018, 05:11 PM #12 (permalink)
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Default Re: Radicava results

Quote:
Originally Posted by Bestfriendstilltheend View Post
Update:

We just came back from the ALS clinic and my husband is still slowly progressing. His ALSFR did go down to 41, but that's not bad considering he was diagnosed May 2017 and symptom onset around July 2015. After having been on Edaravone/Radicava for a year, we feel it's slowing progression.

We have what is called a special needs trial (or something like that), where if a medicine is truly helping someone, that someone can get 9 months free. My husband's neurologist is impressed at how slow progressing he is and has put his name in for a 9 month supply for free. This is really great news.
Hi BFTTE.
So from start ALS July 2015 (4 - until start Radicava 9/17 (44) Now 10/18 (41)....Still in the 40's after Three years is indeed slow progress.
Lucky to be in the small % benefiting from Radicava if that is so ? I wish him well.

<mod: link removed>

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Old 10-17-2018, 06:26 PM #13 (permalink)
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Default Re: Radicava results

<mod: quoted text removed>

I was diagnosed 9/2017, started radicava 10/2017.
Here is my ALS scores to date
ALSFRS:
Date Score
9/7/17 44 / 48
11/3/17 41 / 48
02/02/18 41 / 48
04/06/18 39 / 48
10/05/18 38 / 48

Last edited by lgelb : 10-17-2018 at 06:46 PM
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Old 10-17-2018, 07:21 PM #14 (permalink)
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Default Re: Radicava results

Rush,

Your scores are good as they estimate someone with ALS to go down a point a month. My husband and you seem fairly in line symptom wise. I think the only difference is that my husband does not use a walker. He walks with two sticks if he is walking only 5 minutes and his pinky finger on his left hand is curled and cannot straighten. If my husband walks outside for more than 5 minutes he takes his scooter if we are aiming at going for a "walk" together.
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Old 10-17-2018, 08:24 PM #15 (permalink)
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Default Re: Radicava results

I started my 14th cycle on Tuesday. For the record, I have had no noticeable side effects from the infusions. I do feel that I have more energy by the end of each cycle.

My ALSFRS-R score was 42 at diagnosis in January 2017, with symptoms starting in February 2016. When I started Radicava in October of 2017 my score was 40. It was still 40 at my last neuro appointment the first week of October. FVC was over 100 at my last pulmonary visit. Like many others, I don't know if Radicava is the reason behind zero progression, but I am not stopping it to find out.

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