Tagged: Living with SMA, spinraza, treatment
This topic has 10 replies, 4 voices, and was last updated 1 year, 1 month ago by Helen Baldwin.
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November 21, 2019 at 12:00 pm #21402
Alyssa Silva
KeymasterHey all! Thought it’d be nice to start a thread where we could share our experiences with Spinraza and hopefully encourage/enlighten others by doing so. I’ve found each person’s experiences to be so unique, but reading about them has definitely supported me in my own. I’ll go first.
I started receiving spinraza almost 3 years ago now in December of 2016 and have marked a definite improvement. While these gains haven’t been significant, they have made a world of a difference in my life.
My respiratory function has improved. I can speak louder and for MUCH longer periods of time. I also have a better— but still not great— cough.
I’ve seen improvement in my facial muscles. Prior to spinraza, I couldn’t smile well on the left side of my face. Today, I cheese way too hard! I also can chew and swallow more easily.
My overall stamina has improved but not as much as I had hoped. This could also be due to other circumstances such as diet and sleep.
In the past year, I’d say my improvements have kind of plateaued or stayed the same. In other words, I haven’t noted any new gains. HOWEVER, about 4 weeks before each dose my body begins to slow down and weaken. The spinraza slump is real, folks. But, it reminds me that the drug is very much working in my body, and I’d be lost without it.
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November 21, 2019 at 12:10 pm #21411
Dennis Turner
ParticipantHopefully I can let you know in a few months. I am just now working to get approval.
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November 21, 2019 at 3:22 pm #21414
Alyssa Silva
KeymasterVery much looking forward to that day. 🙂 Best of luck to you!
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November 22, 2019 at 10:42 am #21427
DeAnn R
KeymasterKeep us posted Dennis! I hope the process goes smoothly for you.
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November 22, 2019 at 10:41 am #21426
DeAnn R
KeymasterInitially I had gains, but since then have slid back to just above baseline I’m guessing. My next physical therapy assessment is in a couple weeks, so that’ll tell me more. Since I was on a pretty steady decline prior to Spinraza I still consider it a win. I’m glad they’re re-evaluating dose levels for adults. I definitely felt bigger gains during the maintenance doses.
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November 22, 2019 at 3:33 pm #21432
Alyssa Silva
KeymasterI was in a steady decline too prior to receiving treatment. It has honestly been a lifesaver for me because, every time the drug begins to wear off and I feel weak again, I realize how reliant I am on Spinraza for my well-being. Do you have any inclination as to why you went almost back to baseline?
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November 26, 2019 at 11:51 am #21484
DeAnn R
KeymasterI do still think I’m still in the positive, but have regressed some. I’ll have to see what the assessment says, but I base it on how I handle my phone. Probably not the most accurate determinate (if that’s the right word), but it kind of gives me a gauge as to my mobility.
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November 26, 2019 at 3:25 pm #21495
Alyssa Silva
KeymasterI understand what you’re saying though. To be honest, my PT eval results have pretty much remained the same since the day I started Spinraza. I’ve personally noticed differences, and my family/friends/doctors have said the same. Not sure why the numbers say otherwise. But, when you say you gage its effectiveness by how you handle your phone I totally get that!
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November 26, 2019 at 7:02 pm #21503
Mike Huddleston
ParticipantHey Alyssa – I just posted under Risdiplam section that I’ve had my 4th maintenance dose in October. So far, most of my gains have been in the lower body: increased strength and muscle mass in my quads, VMO, hip flexors, and anterior tibs. Some improvements in upper body strength, but less significant and not as measurable. I’m still using my chair (initially started in 2014 part time, then full time in 2015), but have set rather high goals of standing again, and once there, talking steps. A lot of improvement in PT in that regard. And I work out 6 days a week from 1.5 to 3 hours. The one day I don’t work out is 1.5 hours or so of aqua therapy.
So much of this is subjective. However, other than physical assessments, I also have another more objective measure: in January of this year in PT, I was using a NuStep recumbent stepper on level 1 and using a leg stabilizer on my left leg. I am now on level 6 without a leg stabilizer. not as many steps in a 10 minute period, but I couldn’t move the device on level 3 in January, let alone level 6.
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November 27, 2019 at 12:58 pm #21526
Alyssa Silva
KeymasterHow incredible, Mike! Thank you for sharing this with us. May you have continued improvements and become one step to standing each day— regardless of which treatment (Spinraza vs. Risdiplam) you choose. So crazy to think that, in 2020, we’ll have choices!
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November 27, 2019 at 3:51 pm #21532
Mike Huddleston
ParticipantThank you, Alyssa. Very kind of you. And I understand these are aggressive goals, but I will continue to push myself and take advantage of every opportunity presented. And choice in treatment protocols is overwhelming at times. That we are here today is simply amazing. I’m not quite at the place of Lou Gehrig when he made his “luckiest man” speech, but I do feel so fortunate after watching my body get weaker for 40 years, to now be seeing improvements. It is often emotional.
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November 30, 2019 at 12:14 pm #21539
Helen Baldwin
ParticipantAm cleaning out my ‘hoarder’ inbox and found this – https://smanewstoday.com/2019/11/12/risdiplam-improves-motor-function-in-people-with-sma-types-2-and-3-interim-phase-2-3-data-show/
If you know of others, I’d love to have them.
Thank you!
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November 30, 2019 at 12:15 pm #21538
Helen Baldwin
ParticipantI am just now getting to this, but the timing is actually pretty perfect.
After our baby Jeffrey was diagnosed with SMA (1997), we learned that my mother’s cousin’s two older granddaughters also had SMA. Both were diagnosed with Type 2 – the younger one weaker and actually diagnosed just before the older one. The younger one, a young adult, passed away last year. The older one is the mom of a 3-year old daughter. She continues to work from home; however, my mother’s cousin has just written that she is getting weaker. I don’t know what she’s able to do, but I know her father has hired a nanny to help with her daughter.
We have never met them. We live in NC, and they are in CA. For some reason, they have not been interested in participating in the SMA community (despite my encouragement!); however, my mother’s cousin is very interested in the benefits of Spinraza and Risdiplam. She’s curious to know if it might help her granddaughter and, if so, how.
Some time ago, I sent her links to articles about Spinraza, along with FB groups I thought would be beneficial. I doubt they did anything, but I’m game to send info again. Would anyone mind my sharing what you’ve shared here about your results with Spinraza? And if you have a good link or more for Risdiplam (i.e., results that have been seen in trials, etc.), would you please share? I don’t know anything about Risdiplam, other than it’s an oral treatment.
If you’d like to send it via email, my address is [email protected].
Thanks so much in advance! It’s hard to fathom that I’m asking about ANOTHER treatment for SMA!!! Truly mindboggling for those of us oldtimers….
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