Old 07-25-2017, 02:06 PM #1 (permalink)
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Default Treatment

I finally had my appointment in the ALS clinic on Monday. I met with my case worker, OT, PT, and someone from the MDA. I now have what seems like a ream of paperwork to read through.

I guess the good news is that they hope to start my Radicava (edaravone) infusions middle to late August. Obviously there are still a lot of hoops to jump through but at least it feels like there is something being done treatment wise.

I'm sure the insurance company will be thrilled when they hear about the cost.
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Old 07-25-2017, 05:25 PM #2 (permalink)
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Default re: Treatment

Interesting!

Please keep us updated - there will be serious intrest in how it goes!
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Old 07-25-2017, 08:01 PM #3 (permalink)
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Default Re: Treatment

Best of luck Clamdigger. I just read about the proposed treatment. Sounds very hopeful. https://www.als.ca/blogs/second-als-...united-states/
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Old 07-25-2017, 08:44 PM #4 (permalink)
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Default Re: Treatment

Quote:
Originally Posted by laurel View Post
Best of luck Clamdigger. I just read about the proposed treatment. Sounds very hopeful. https://www.als.ca/blogs/second-als-...united-states/
FYI: this has already been extensively discussed in *this* forum. Try Search.
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Old 08-07-2017, 03:56 PM #5 (permalink)
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Default Re: Treatment

Like everyone else I'm also interested in hearing experiences with the drug Edaravone. If there are extensive discussions on this subject on this forum than I am missing something. I did a search and came up with five posts. Another thing that makes me curious is that some patients are going to Japan but we do not hear continuing results. Even the Japan trials that they had it would be encouraging to hear even " my little finger moved today or my leg is better" from some of those participants.
Last thing.... When I'm on this forum I get the pop up ads that cover up some of the text that I'm trying to read. There must be a way to eliminate these ads.
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Old 08-07-2017, 04:00 PM #6 (permalink)
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Default Re: Treatment

Install an ad blocker (AdBlocker Plus or uBlock Origin) in your browser to lose the ads.

Re edaravone posts, you also would need to search on Radicava and Radicut.
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Old 08-08-2017, 05:48 PM #7 (permalink)
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Default Re: Treatment

I've searched Radicava,Radicut, and Edaravone... Not a lot of info on results. What about member AKnate.........any recent results shared?How can ALS patients go through the exercise of multi-multi- infusions without knowing any past patients results. It almost seems like the FDA was pressured into approving this drug.
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Old 08-08-2017, 06:48 PM #8 (permalink)
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Hey Pecksco!

Well, my husband is really slow progressing and the Dr in Japan said we would only be able to tell if it's working for him within 2 years of monitoring. While he was in Japan he met a man from America who had an atrophied arm and did say his movement improved. My husband doesn't have any limbs fully atrophied so again, very hard to tell whether it's working. His fingers have started to noticeably become weak, however this started prior to infusions. I guess we will be able to tell if they progress further this year. His legs have remained the same, no progression or further weakness that we know of.

We are going again in Oct/Nov and are meeting with another couple who i have met from the Forums. I'm sure we will have more to post while we're there.

This drug isn't meant to improve patients, it's just meant to slow down the rate of progression. If you do improve, that's a bonus.
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Old 08-08-2017, 08:54 PM #9 (permalink)
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Default Re: Treatment

I too am enrolled and awaiting my radicals. The infusion site is my neuro's office. First 14day cycle 2b done in hospital..
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Old 08-08-2017, 08:55 PM #10 (permalink)
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Radicava not radicals
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Old 08-08-2017, 08:57 PM #11 (permalink)
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Look on Radicava.com webinars etc..
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Old 08-09-2017, 11:39 AM #12 (permalink)
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Default Re: Treatment

Thanks AKNate for a detailed update.
I would like to know how well he is tolerating the infusion, how about any side effects he noticed. Is he going through regular liver enzyme tests?
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Old 08-09-2017, 04:45 PM #13 (permalink)
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Hey Ash,

Thankfully no side effects at all, ever. He tolerates it really well. His liver hasn't been tested in a few months but was tested weekly in Japan for 3 months - nothing was elevated and it all looked good. He is also taking Riluzole too.

I forgot to mention in the previous post, while in Japan he did regular breathing, strength grip and pinch tests. All were consistent and didn't get worse over the 3 months. We noticed that his grip numbers got stronger however that could have just been coincidence? He was never weak in his upper body...

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Old 08-17-2017, 11:44 AM #14 (permalink)
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Just wanted to post a quick update.

My insurance company has approved the treatment but won't let Johns Hopkins administer it. They gave a few other options an there was a place 15 minutes from me which beats the hour plus drive into the city. Since I've already met all the deductibles and the out of pocket I just need to make the copays for each visit.

So now I'm just waiting to be scheduled.

I'll post as I can as to what I experience during the treatment.
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Old 08-17-2017, 12:05 PM #15 (permalink)
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Default Re: Treatment

Wonderful news about the coverage and finding a place closer by! Looking forward to hearing how it goes for you and wish you a very positive response to your new treatment.

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