Day 68: My Road To Spinraza Begins

Parker Fo-shay
Aug 8, 2017 · 4 min read

Day 68! I am absolutely exhausted after spending nearly five hours at the doctor’s today. This is why my post is so late because I needed some relaxing time. I can safely say everything from this appointment equals out to good news. It is always an excellent feeling when your doctor has nothing but good news for you. I will go over everything but the big announcement is, I have begun my Journey to get Spinraza!

What is Spinraza?

Spinraza is the first FDA approved TREATMENT for Spinal Muscular Atrophy. I want to make this very clear to all of you, this is NOT a cure for SMA. The goal of this drug for someone my age is to halt the progression of my SMA and best case scenario would be gaining small muscle improvement. When I say small, I mean small. A good way to look at this treatment is like me treading water until a better alternative comes out. I will provide more information below.

I have a long way before I begin taking this drug. For beginners, I have to go through a hand full of tests in order to build my case for insurance. Spinraza cost about $750,000 and insurance is hesitant to cover it. If everything goes accordingly, I should get my first dose by the beginning of 2018.

Additional information:

SPINRAZA is the first and only FDA-approved treatment for spinal muscular atrophy (SMA). In laboratory tests and animal studies, it was shown to increase full-length survival motor neuron (SMN) protein by targeting the process through which it is produced by the survival motor neuron 2 (SMN2) gene.

In a controlled study, individuals with infantile-onset SMA treated with SPINRAZA achieved and sustained clinically meaningful improvements in motor function compared to untreated individuals.

In addition to the controlled clinical study in individuals with infantile-onset SMA, the efficacy of SPINRAZA was supported by open-label uncontrolled studies in symptomatic individuals who ranged in age from approximately 1 month to 15 years, as well as presymptomatic individuals who ranged in age from approximately 8 to 42 days at the time of first dose.

The individuals in these studies had or were likely to develop Type 1, 2, or 3 SMA. When treated with SPINRAZA, some individuals showed improvements that included:

  • Achieving milestones such as the ability to sit independently, stand, or walk when they would otherwise be unable to do so
  • Maintaining milestones at ages when they would be expected to lose them
  • Surviving longer than expected considering the typical course of their disease (number of SMN2copies)

The overall results of these studies show the efficacy of SPINRAZA across a range of individuals with SMA, and support the early start of treatment.

What else was discussed:

My migraines! I am officially starting on a preventive treatment for these god forsaken things. No more popping Excedrin like its candy which is great news for my Liver. Given the fact that I have a type of Liver disease, taking Excedrin was never a good choice.

I discussed my future pertaining to physical therapy and had all my questions answered. We came to the conclusion that PT on my legs is a lost cause. The amount of pain I would have to endure is not worth the outcome. I have no desire to stand since walking is not going to be a reality in my life time. I am pleased with this news and I greatly appreciated how straightforward the therapist was with me.

The last major change we discussed was pain management. I have had a major spike in my daily pain and I am no longer comfortable. I will be visiting a pain management clinic from now on. Do not worry, I have made it very clear to them that I will not accept any Opioids. I am adamant about not going down that dark path. This is something I am extremely pleased with because a life in pain isn’t a life at all.

I am going to wrap it up on that note. I hope you enjoyed and like always, I will be back tomorrow with another post. See ya’!

I am so close to hitting my merchandise sale goal! Only 6 more days left to pick up a limited supply of daysofparker.com merchandise. Percentage of the proceeds goes to St. Jude’s Children Research Hospital. https://teespring.com/days-of-parker

Here’s another beautiful photograph from my lovely photographer.

Originally published at Days of Parker.

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