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Hi, First of all, I would like to thank you

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Neurologist
Practicing since : 2004
Answered : 2924 Questions
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Hi,
First of all, I would like to thank you for your response to me. Unfortunately, you
were correct. After having the 2nd EMG. test at Lahey Clinic, Burlington, Mass.
my brother was diagnosed with ALS. The 1st EMG test came back o.k , so we were
somewhat surprised from XXXXXXX until October that it had evidently progressed enough
to show ALS.
My brother is starting at the Lahey's ALS clinic on the 13th of November. But my
question is at 80 years of age is the progression slower... Does Radicava infusion
help. Is it covered by insurance at all? Are there any other things he can do to
help delay progression. Right now he continues to have leg and arm cramping,
weakness in his hands, some shortness of breath. But he does not have trouble
with swallowing or walking. He still drives although he has a difficult time turning
on the key. I would so like to understand this disease process especially in a person of my brother's age.
If you have any answers, I would so appreciate it. Thank you
Posted Mon, 27 Nov 2017 in null
 
 
Answered by Dr. Olsi Taka 5 hours later
Brief Answer:
As follows

Detailed Answer:
Hello again! I am really sorry a diagnosis of ALS was made in your brother's case. While your description seemed to correspond to it, it is not a diagnosis you hope to see confirmed.

Radicava is a very much a new drug. It was approved in the US only in May of this year to be launched in August. Other countries where it's been used include only Japan and Korea. So living in Europe I do not have any personal experience with it, neither should US physicians have much experience as in chronic diseases you have to monitor the progression of the disease over years in many patients to reach conclusions. Studies in Japan and Korea have shown to slow by about 30% the progression of the disease.

As for the issue of insurance, living in Europe I'm not the most appropriate person to ask. From what I am reading online the manufacturer has established a program called Searchlight Support to assist patients in having the medication reimbursed. I am providing a link which includes the phone number for the program http://web.alsa.org/site/PageNavigator/alsa_radicava_faq.html

There aren't many other options. The only other medication is a drug called Riluzole which slows progression by 3-6 months, but doesn't stop it.

The progression of the disease varies among patients. Generally speaking about half of the patients survive for 3 years, and only 25% for 5 years. But numbers vary a lot among individuals. One factor in his favor is that he hasn't shown bulbar signs (trouble swallowing), if symptoms only in the limbs the outcome is better. On the other had age is not in his favor. Elderly patients are more prone to have a shorter survival as they manifest bulbar and respiratory signs earlier and are more vulnerable to complications like infections. Every case is different though depending on the cells affected first (as I said it's good he hasn't bulbar signs) and the level of supportive care received.

I remain at your disposal for other questions.
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