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Post by darthoso on Dec 23, 2016 22:04:35 GMT -5
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ynwa
Junior Member
Posts: 51
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Post by ynwa on Dec 23, 2016 22:17:15 GMT -5
Hmm... you go first.
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Holy Fuck
Dec 23, 2016 22:33:38 GMT -5
via mobile
Post by newjess on Dec 23, 2016 22:33:38 GMT -5
Holy shit... what are your thoughts on this darth?
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Post by darthoso on Dec 23, 2016 22:46:20 GMT -5
I'm currently trying to research intrathecal spinal injections. That's my big question.
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Post by Corey on Dec 23, 2016 23:19:45 GMT -5
They are painful, and you will probably need to do it multiple times.
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Post by darthoso on Dec 23, 2016 23:22:49 GMT -5
They are painful, and you will probably need to do it multiple times. 4 doses every 2 weeks then once every 4 months.
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Holy Fuck
Dec 23, 2016 23:50:48 GMT -5
via mobile
Post by newjess on Dec 23, 2016 23:50:48 GMT -5
So... I'm a little confused why this article has this listed as the "first-ever treatment for SMA" if spinal injections are already a thing... also, what's the deal with those (injections)?
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Post by darthoso on Dec 23, 2016 23:59:14 GMT -5
So... I'm a little confused why this article has this listed as the "first-ever treatment for SMA" if spinal injections are already a thing... also, what's the deal with those (injections)? It's the method of administering the drug. It's usually used, from what I read, for pain management and cancer drugs. I'm just not a fan of needles.
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Post by wonk on Dec 24, 2016 0:24:44 GMT -5
How well does it work?
If it does work at all, I don't understand how people can be scared of the needles. Excuse me, if that is ignorant.
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Post by Emma on Dec 24, 2016 0:31:12 GMT -5
I didn't read super carefully but how does being "not a fan of needles" preclude you from being interested in the first ever treatment of SMA? Those two things seem so far apart.
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Deleted
Deleted Member
Posts: 0
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Post by Deleted on Dec 24, 2016 0:46:22 GMT -5
Start shooting dope and you'll learn to love needles real fast.
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Post by Corey on Dec 24, 2016 1:06:36 GMT -5
I may not get this treatment...the preliminary data for this showed it worked well when given early but when given to those who already developed weakness it was not so good. I haven't kept up with this for a while so maybe it's better than I remember. But I'll probably just wait for the gene therapy treatment.
Also doing this will likely preclude you from other clinical trials. There are some for muscle enhancers that may be more beneficial to an adult with SMA.
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Holy Fuck
Dec 24, 2016 1:12:37 GMT -5
via mobile
Post by darthoso on Dec 24, 2016 1:12:37 GMT -5
I didn't read super carefully but how does being "not a fan of needles" preclude you from being interested in the first ever treatment of SMA? Those two things seem so far apart. Not at all, I just don't like the idea of a needle being jammed into my spinal cord every 4 months. Normal injections I'm fine with, I was laughing last time I got a blood test since they 4 nurses couldn't find a vain. My only non needlephobic question is how's this work since I've got a full fusion? The only data I've seen was with kids. Apparently kids who got the drug improved by a factor of 4 using some function scale and kids without it declined by a factor of 1.9. What that means, no idea.
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Post by Mets on Dec 24, 2016 1:15:55 GMT -5
This has been big news amongst my family tonight as well, and being the one that had to be the realist/pessimist about it was really difficult. I think it's very promising for babies, but I don't think I'd be one to benefit from it, as is the case for most here unfortunately. The other thing that I haven't seen much information on is how a Spinal Fusion affects the procedure. Most adults with SMA have had one, and from what I understand this would involve drilling a hole through the spinal rod, and that can't be as simple as it sounds.
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Post by Emma on Dec 24, 2016 2:03:18 GMT -5
Ok I'm not an SMA or MD dev so help me out here. Is a full fusion mean that your entire spine is fused with metal meaning you can't bend your back or neck at all?
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