diana-a
Forum Replies Created
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I’ve been on Spinraza since September 2017 and have been quite pleased. I personally prefer dealing with my treatment every 4 months instead of daily. Fortuntely it is a painless and quick treatment for me. I’m in and out in 15 minutes from the procedure. It’s costly and fortunately my insurance covers it. It seems that every four months rolls around pretty fast. Next week I’ll have dose #23. Can’t believe it! Looking forward to a higher dose someday in combination with another treatment.
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All good here! Looking forward to St. Patrick’s Day tomorrow. Wear green LOL
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Welcome Robin! Look forward to meeting you someday. I’m 60 years old. SMA 3 4 SMN2 copies. I was diagnosed at a very young age. My older brother also had SMA and had been diagnosed with Duchenne MD. It was in the early sixties and they did not know about SMA. They knew to be observant of my walking, etc. I’m still ambulatory but use a cane, walking sticks, or walker for long distances as of last year when I injured my hip. So grateful for the therapies that are available now.
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I’ll be receiving my 18th dose of Spinraza 7/1. Spinraza has been effective for me. I wish that they would increase the dose for adults. Prior to every dose, I start feeling weak and need my “juice”. Once every 4 months is easier for me and my schedule than dealing with my treatment daily. Fortunately I don’t experience any side effects with Spinraza. I’ve tried to sign up for the increased dose of Spinraza (Devote) clinical trial in Dallas but the spots were filled. Hopefully they’ll have data from the clinical trial soon and the FDA will approve higher doses for adults.
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I had my 17th dose two weeks ago. I’m very much an advocate for Spinraza. My strength skyrocketed when I started my loading doses. Over the years, my strength has weakened some (probably due to age). I’m 60 years old and feel the slump before every maintenance dose. I wish that Biogen would increase the dose for adults. I’ve never understood why we get the same amount of Spinraza as infants and children. I also look forward to the day when gene therapy is also an option to be used in conjunction with Spinraza. Fortunately I don’t have any side effects with Spinraza. I try to exercise daily to get every benefit I can from Spinraza but some days it’s hard to get motivated. lol I’ve looked into all the clinical trials but my age disqualifies me for the ones that I’m interested in. It’s hard to be patient and wait for the increased dose to get approved. We just have to wait I guess…