I’m Tired of the Backstabbing! | Changing SMA Treatment | Digital Activism

Episode Show Notes:

Caden Nelms recently switched medications for Spinal Muscular Atrophy. He took a lot of information into consideration and realized that he could no longer handle the injection. Caden shares his personal journey switching from Spinraza to Evrysdi for treatment for Spinal Muscular Atrophy, including the medical processes, challenges, and benefits of each medication. 

Chapters

00:00 Understanding Spinal Muscular Atrophy (SMA)

00:43 The Transition from Spinraza to Everesty

05:52 Challenges Faced with Spinraza

12:07 The Benefits of Evrysdi and Future Outlook

Resources

Spinraza (Nusinersen) - https://www.spinraza.com/

Evrysdi (Risdiplam) - https://www.evrysdi.com/

Spinal Muscular Atrophy (SMA) - NIH - https://www.ninds.nih.gov/health-information/disorders/spinal-muscular-atrophy

Episode show notes & transcripts can be found here: ⁠⁠⁠⁠⁠⁠www.digitalactivismpod.com/⁠⁠⁠⁠ ⁠⁠

Follow Caden!:

Caden IG:⁠⁠ ⁠⁠⁠⁠⁠⁠⁠instagram.com/obviously_its_caden/⁠⁠⁠⁠⁠⁠

Caden TikTok:⁠⁠ ⁠⁠⁠⁠⁠⁠⁠⁠⁠tiktok.com/@wheelchair_king⁠⁠ ⁠⁠⁠⁠⁠⁠

Caden Threads⁠:⁠ ⁠⁠⁠⁠⁠⁠threads.com/@obviously_its_caden⁠⁠⁠⁠

Email Caden: ⁠⁠cadennelmsofficial@gmail.com⁠⁠

Follow the Pod!:

YouTube:⁠⁠⁠ ⁠⁠⁠⁠⁠⁠   / @digitalactivismproject  ⁠⁠

Pod IG: ⁠⁠⁠⁠instagram.com/digitalactivismpod/⁠

keywords

SMA, Spinraza, Evrysdi, medication switch, spinal muscular atrophy, medical treatment, insurance approval, nerve pain, medication side effects, patient experience

Love y'all! <3

Episode Transcript (Approx.):

Hello, beautiful people. Welcome back to another episode of Digital Activism. I am back in the studio and this is another solo episode and we are stockpiling a few episodes. So if there's a few solo, please bear with me. So I wanted to talk about switching my medication from Spinraza to Evrysdi Both are medications that are FDA approved for Spinal Muscular Atrophy to slow or stop the progression of...

the disease and disability. So I was, I started Spinraza back in 2021, I believe, and I was the first person on Georgia Medicaid to receive it. And that was thanks to the team of the neurologist office, the insurance advocates with the medicine, my family access manager with the medication. had my neuromuscular doctor. had physical therapists, occupational therapists.

they all worked in tandem along with me being stubborn, which you have to do the insurance, to write letters and impact statements and personal statements and get it approved. And since then, more people have been approved on Georgia Medicaid. So I've been doing that and I wanted to explain what these medicines do in general, but also how they're given

why I switched and the issues that came along with it. So when I started Spinraza what you do is, of course you have to get blood work every time, of course, and it is a intrathecal injection, which means it goes straight into the Spinal cord, into the Spinal fluid. And there are four loading doses. So you go back every 14 days, I believe, and the last one's 30 days.

After that, you get an injection into your Spinal cord every four months for life. They recently, like as I was getting off the medication, they recently added higher doses, which will hopefully help individuals be stronger for longer and not have that period of like plateauing or decreasing in strength and energy ⁓ until their next dose. I did not get the chance to try the higher dosage.

And so I wanted to explain what the medicines do. when this medicine is given via injection, you are lightly sedated sometimes if you choose to be. And again, they just take it and it's like a Spinal tap essentially. And they put it in there, put the medicine in and you got to deal with the Spinal headaches and the chance of hitting the nerves and...

all that kind of stuff. so the medicine is important because when you have SMA, it means that you have

a mutation or change in the SMN1 gene or the survival motor neuron gene. And what that means is that gene produces the SMN protein that your muscles need to maintain and grow and be strong enough to support movements in your body and things like that. So with the mutation, that is not there.

And so your body is having to rely, all your muscles are having to rely on the SMN2 gene, which is like the backup gene. So it is not meant to produce enough proteins to support your entire body. It just picks up like the slack. And so over time, as the SMN1 protein is not producing,

like the genes not producing it'll eventually wither away and die and then your muscles get weaker, you start having troubles. It's usually the muscles closer to the core of your body. So arms, neck, swallowing, feet, legs, hips, things like that. And so the SMN2 gene cannot keep up. So this medicine goes in there and creates more SMN2 proteins and like helps suffice it.

that's how they kind of classify what type of SMA you have, is how many copies of the SMN2 gene that you have. So everybody that has an SMA, SMN1 gene has ⁓ a mutation of some sort. The second one, you can have anywhere between one and four copies. And that kind of determines what type of SMA you have, how.

severe the symptoms are and how weak you're going to get and how fast and over time, you know, where is it going to, what's it going to do? So this medicine helps supplement that protein and that gene to slow or stop the progression of the disease. And so it's very important. And I was so fortunate to be on this medication and this, um, and it was great until it wasn't.

And by that, mean, I started having really bad pain. Essentially, my pain was nerve pain. My back, I've had scoliosis surgery in 2010, which means it's been a while, and that surgery was an old, more like older way of doing it. And so they're called the Harrison rods, I believe. And it makes it harder for this, know, Spinal tap or,

injection to happen because, you know, back then this medicine was not even on the horizon. Like it was not around. They did not know at the time there was no, no medicine, no cure, no anything for SMA. And so it made it more, you know, they didn't think about it. And so now fast forward to, you know, 2020, 2021 and all that people that have this surgery or before and the way, and the way it's fused together.

Spinal fusion, it makes it difficult for them to get the needle in. I have a picture of the needle. I'll put it right here in next five seconds. So if you don't want needles, look away. Three, two, one. Here's the needle. And you're good. You can look back now if you don't want needles. this needle has to make it, for me, it went through my side into my Spinal cord and then back out. And what they did was they put it in, take some

Spinal fluid out, put the medicine in, return the Spinal fluid back to its original home, and you lay flat for an hour to stop Spinal headaches. They don't always sedate people, but you can ask for slight sedation. did. And also, depending on your weight, determines how much, and how much they can see the back of your throat, determines how much sedation you get. Because they, it's local anesthetics, not, I guess it's the term for it. It's the, like,

It's in the IV, but there's not an anesthesiologist, it's the nurse giving it. So you're not completely out. We call it a twilight phase. I don't really know what it's called. But essentially I had little bit of Versed, or I had Versed and a little bit of fentanyl to knock me out enough because it was painful. I mean, it's a three foot long needle going in you. Or however long it is, I'm exaggerating slightly. And so, yeah, and then I started last.

couple years, probably the last two years I would say, I started having really bad nerve pain. And it wasn't immediate. It would be two or three days after from my waist all the way down my butt and the back of my legs. So painful to touch, but hey, guess what? In wheelchair I'm sitting all the time. So how is that supposed to work? It's not. It's painful. It sucks. And the medicine doesn't always help. I also had just like a doctor would be like,

No, that's not from this injection. I was like, well, it's only happening when I get the injection. And y'all have said that it sometimes the needles like, well, so excuse me, excuse me, come through to the nerves and scrape some side swipes them. ⁓ and where they have to go in it's right. Like where the pain is, I mean, it's right at the bottom of my spine. at my tailbone, which is a nerve cluster in there. and so.

Yeah, it sucked and it was getting worse and worse. Then because of government and insurance and things like that, they switched me from my neurologist and that company or office, whatever you want to call it, who was only an hour, 45 minutes to an hour away, moved me to a different one, which was

two to three hours away if traffic's good. And then the hospital went from 45 minutes to an hour to being three hours away. And if you break it down, say you get there at 11, then you have to get a blood draw, you have to wait for it come back. And so, you had to get an IV. And then let's say I get on the table at one o'clock. And then the procedure takes 30-ish minutes.

And then I have to lay flat for at least an hour with some IV fluids going through me. Cause I get the headaches so bad while I'm drinking a Coca-Cola laying down. And then after that, I get up still kind of out of it, still sore. You know, I just had needle in me and then drive back or ride back home two hours, probably during rush hour. So it's like a full day and I just got stabbed in the back. I don't want to do that.

So like, it was getting to be too rough. Like the closer one was already pushing it. And I'm stiff, I feel like I'm stove up, I'm laying on my side strapped down to a CT machine for at least 30 minutes. And like I'm claustrophobic, so the straps always bug me. My hands are usually tied above my head because they can't stay on their own. And I've also had some weird, weird dreams during my injection, but that's besides the point.

And then I like, I know, it just got to be too much. I used to have issues getting IVs. I used to have issues with seeing the back of my throat so I couldn't get as much Versed or fentanyl, which made it more painful in the long run. And then back to the nerve pain, I couldn't do anything. I couldn't live for two weeks. Two to three weeks, was not able to go to work or school or...

In fact, I remember I was in college the first time that pain happened and oh my God, it was so bad to the point where I wasn't going. Like it was, I was borderline, am I going to like take a semester off of college? Because it wasn't going away. I was going to fall behind and I was falling behind. And it was to the point like, it's like I had surgery because like my, my teacher or professor put together like a get well soon banner and like some, some stuff and my friends brought it to me at the house. I was not able to leave.

So much pain and I just couldn't do it anymore. And so I started the process of Evrysdi which was the second, I believe, FDA approved medicine for SMA for adults or older individuals with SMA. Because they do have some medication for babies but obviously I've passed that point. And so, yeah, I...

I wanted to try and so it was liquid and it was a little bit of a hassle in terms of keeping in the fridge and refrigerate it not touching it to your skin and you know, whatever it may be. But now they recently in last few months came out with a tablet and it's itty bitty. It's perfect. And so it's more you have more freedom to do whatever and I'm on the go a lot. Like I come here once a week, I go to work once a week. I am always out and about with people and so I can just set an alarm on my phone.

take the medicine at the same time every day, and then I'm good. And so that's kind of where I was leaning towards. And I will say that I was not the happiest with the individuals who I brought to their attention that I would like to switch medications.

It seemed like I had no proof. It seemed like they were guiding me away from this one. It's by, and they were giving, mean, I'll always take side effects and, and, um, you know, I'll take a lot of things into account whenever I'm deciding what I want to take and why, and we had the pros and cons and I told them that and they still would not do it. So luckily since I moved neurologist,

This neurologist was totally okay with it.

I did switch. I made it. And both teams in terms of medication are so great. So for Spinraza, you you have a family access manager or FAM. Both of mine have been great. I have one. They recently restructured their company.

I got a new one, shout out Melanie and Alison, love them both. And I got to meet Alison a couple times in person recently and I will still keep in touch with her even after, since I'm not on medication anymore. And I just love them both to death and they helped me through a lot, whether it be insurance approval, physical therapy, occupational therapy, blood draws.

keeping me up to date on days and times and getting me scheduled at the hospital and making sure I got what I needed and had everything ready and come to my appointments for the first time or met up with me when I went to the conference in California last year. You know, so many different things. My current one said that her coworker met me at an event here in Atlanta a few weeks ago and she's like, he has the prettiest smile. So like they are so sweet.

And then, so I will still keep in touch with them. I cannot say enough good things about that medicine. It just did not work for me. The injection was too painful for me. Now, if there is another way of doing it, then who I would've stayed with it. But I do not feel that another option is to go through your neck, but that there's a lot more risks that come with that. So I did not feel comfortable doing it. Um, and so I switched over to Evrysdi which so far,

I can't give much on, besides the team and medicine's great. Like I want, I'm going to do future updates, but I've only been on it for a few days. For this team, you know, I have my pal, ⁓ who's like the person in charge of my case and, ⁓ the patient advocate liaison or something like that. ⁓ she is wonderful. I've met her a couple of times already.

and talked with her about switching. She's made it very clear to research over the last five plus years of it for people my age. And every demographic I'm kind of in, she stepped me through the effects or side effects or possibilities of just the data. Went through everything, told me there were options in terms of, like, if I was concerned about something.

then there may be options that they can work with. Again, now it's in the pill, it's tiny. They have the liquid form. And, you know, just don't do, it's so much easier. don't, no blood work every time, no traveling. I just, it is delivered to my door by a specialized pharmacy overnight shipping. So it was just so great. And, ⁓

They sent a care package which had a calendar with stickers to keep up to date with doctor appointments and therapy appointments and dates of refills and contact information and like everything you would need a journal to keep track. And I will be doing video diary journal type things as well as personal ones of like the things I've noticed because they want us to do that for insurance purposes. Anyway, they work with the SMA individuals.

that maybe post social media, that they work together. had one of my great friends, Maddie, who has this, she actually flew out to San Francisco to do a photo shoot with the company. It's just such a cool, cool opportunities and just a great community with their company. And I'm excited to be on it. I got approved for them to go ahead and send me a 30 day supply of the medication.

without my insurance fully approving it so that way I could get started during the downtime waiting on my insurance to approve the prior authorization and the prescription for the medicine. They had to have approved that. I switched and no longer taking the previous medicine and so much things that they asked for to make it complicated. they are, apparently I've been told that Georgia Medicaid

approves this medicine pretty often, most of the time. So I don't have to worry about that as much. And yeah, so I switched. I love both medicines. They've both done so much. This one, since it is so small, I was told that since everything about it is so small, it can go into my bloodstream and get like my muscles throughout my entire body, not just the core muscles. So

that people that are on it find that they get more strength and mobility in their extremities and things like that. So that's something I'm hoping to look forward to. yeah, I am so thankful that I've been on both medications and I had that opportunity and I had the chance to and had the insurance that with a little push will usually help me out.

And yeah, could not be more thankful for both teams and all they've done in terms of the medication improvements and proof and data and getting it. know, everything's just been great. And so, yeah, I switched from Spinraza to Evrysdi. I'll keep you all updated on how it's going. And yeah, that's it for this episode. Thank you, beautiful people. Talk to you all next week.