My Spinraza Experience
I just want to remind everyone that their medical journey will be different from everyone else’s.
I share this story in hopes to answer questions you may have and to help make the processes and decisions easier for you and your medical team.
Administering loading doses with a spinal fusion
If you have done any research about Spinraza, you know there are loading doses that must be done in the beginning stages of the drug. My biggest question as I was approaching my first loading dose was, how well it would be administered with having a full spinal fusion?
I was receiving my dose from a specialist in radiology who would be using cameras, lots of medical equipment, and ultrasounds to try and ensure the shots would be done accurately. So, unfortunately, our first go was not very successful.
They had to stick me 5 times- they tried in my upper spinal area, through the side of my ribs, when they finally nailed an open spot in my tailbone. I would be lying if I said tears were not shed laying on the table that day.
Complications and pain with the medication
I have a pretty high pain tolerance. But when things literally strike a nerve, it’s not fun. I don’t believe getting poked 5 times is the norm, but I had agreed to go through with the process until they got it, or until I absolutely couldn’t take it anymore.
The first one was rough, they had to give me pain medicine. I was in the recovery room for about an hour and I got sent home. Then a few weeks later I came back for my next loading dose.
They were confident; the doctor said it would be easy and we would go to the same spot every time. Unfortunately, this did not end up being the case, either. This time around we had complications again, but even more.
There were positives to this medication
As I completed my loading doses, I realized that this might not be the most practical long-term treatment for me. Some pros of my personal experience in this treatment are that during the loading doses I had the “Spinraza glow.”
I could feel myself stronger, I had more energy. However, by the end of it, we decided that for my situation, this wasn’t practical.
Oral medication was more practical for my needs
We decided we were going to transition to oral medication. Called Risdiplam, it’s an everyday medication with a different potency than Spinraza.
Now that I have found something better-suited for my needs, after a lot of experimentation and trial and error, I am content with where I’m at. But it took lots of trying.
I am in a better place having gone through this experience, because it turned out to point me in a different direction, towards a solution most sensible for me. Everyone’s story is different, and others may turn to Spinraza over Risdiplam.
At the end of the day, it’s up to YOU to decide. Never be afraid to say no.
Which emotional aspect of SMA do you find most difficult?