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Stroke etanercept injection 18 months on: Andrew’s update after the PESTO trial
Stroke etanercept injection 18 months on: what lasted, what changed, and what Andrew learned after the PESTO trial
Some stroke survivors are told a version of the same sentence in hospital: “After three months, what you have is what you’ll have.”
Andrew Stops didn’t buy it, not because he was naïve, but because he needed a reason to keep showing up for rehab when nobody could give him a straight answer about what “recovery” would look like.
Four years after his ischemic stroke, and 18 months after a stroke etanercept injection, Andrew is back to share what improved quickly, what continued to evolve, and how he made peace with research results that didn’t match his lived experience.
The question so many survivors are really asking
When people reach out about perispinal etanercept (often discussed as “etanercept after stroke”), they’re rarely asking for a science lecture.
They’re asking:
Those questions are valid. They’re also heavy, because the stakes are high: the treatment is expensive, travel can be intense, and the emotional cost of hoping—then not getting results—can be brutal.
Andrew’s baseline: what his stroke took at the start
Andrew’s stroke most impacted his right side. Early on, he had:
He worked hard to walk again quickly, using practical supports early (including an elastic extension on his shoe to help keep his foot up). But his bigger mission was clear: find ways to complement rehab—because medical staff couldn’t give him a timeline, and he felt a “lack of hope” from their perspective.
That’s a common moment for survivors: you’re doing the work, but you also want a map.
The “complement” phase: why hyperbaric helped, even without perfect measurement
Before etanercept entered the picture, Andrew leaned on what had helped him before: hyperbaric oxygen therapy (HBOT). He had a history of a brain tumor and had used hyperbaric previously for healing, so he rented a soft-shell chamber at home for three months and went in daily for 90 minutes.
Andrew was careful with his claims: he couldn’t measure physiological changes in real time at home. But he could measure something important, his ability to cope.
HBOT became a daily “warm cocoon” where he could breathe oxygen-rich air and calm his nervous system. For him, that mental-health benefit wasn’t a side note. It was fuel.
And when you’re rebuilding your life after stroke, fuel matters.
The etanercept decision: hope, uncertainty, and the reality of the “roll the dice” problem
Andrew discovered perispinal etanercept through a media story about Dr. Tobinick’s clinic, and after about a year, decided he needed to know he’d tried everything he reasonably could.
He crowdfunded to afford the trip and treatment.
That detail matters because it introduces the single biggest ethical challenge around treatments like this:
Even if you try to stay balanced, it’s hard not to hang hope on something that costs time, money, energy, and pride.
Andrew doesn’t tell people to go. In fact, when people contact him now (he’s spoken to more than 50), he’s careful:
That’s responsible guidance from someone who understands how fragile hope can become when it’s under financial pressure.
What changed fast (and what stayed improved 18 months later)
Andrew’s report of early changes is striking not because it proves causality, but because it describes specific, functional shifts:
Cognitive fatigue and sensory overload
He noticed cognitive fatigue dial down immediately. He still experiences it, but it takes far more to trigger now.
The most vivid example: on the way to the clinic, he used an eye mask, noise-cancelling headphones, and had medication ready for overload. On the return flight 24 hours later, he didn’t need any of it. He stood in the airport like any other traveler.
Pain and cramping
A persistent cramp in his right calf eased significantly.
Emotional regulation
He noticed improvement in emotional control, something many stroke survivors quietly struggle with and often feel ashamed about.
Hand function and fine motor control
His right hand went from feeling like it moved “in molasses” to loosening up.
And here’s where the “18 months on” part becomes powerful: Andrew recently discovered he could play scales on his clarinet again, covering holes with independent finger movement, something he hadn’t been able to do since the stroke.
That’s not framed as: “etanercept did this.” It’s framed as: recovery kept unfolding.
“Your stroke recovery doesn’t stop. There’s no end date.”
The PESTO trial: when research challenges your story
Then came the PESTO trial results, which (as discussed in your episode) reported that etanercept was not more effective than placebo in the studied group.
This is where Andrew’s story gets even more human.
He didn’t just shrug it off.
He described feeling guilt, even fraudulence, because he couldn’t reconcile the research headline with his lived experience.
That response is deeply relatable: when something helps you, and others don’t get the same outcome, it can feel like survivor’s guilt, especially when people have spent enormous money and emotional energy.
A careful theory: the blood–brain barrier question
In your conversation, Bill raises a hypothesis, not a proven conclusion that deserves careful attention:
If etanercept struggles to cross the blood–brain barrier in general, could certain people have a more permeable barrier due to factors like stroke, surgery, or radiation therapy (which Andrew had)?
Andrew himself wonders if radiation could be part of his “why.”
This isn’t a sales pitch. It’s a research direction, a possible explanation for why outcomes might vary so dramatically between people.
If that line of thinking ever becomes clinically actionable, it could change the whole decision-making process for survivors, because the question would shift from “roll the dice” to “are you likely to be a candidate?”
What a stroke survivor can take from this without being sold to
If you’re reading this because you’re considering a stroke etanercept injection, here are the grounded takeaways from Andrew’s 18-month update:
If you want ongoing encouragement and tools to navigate recovery (and the emotional complexity that comes with it), Bill’s work is built for that:
This blog is for informational purposes only and does not constitute medical advice. Please consult your doctor before making any changes to your health or recovery plan.
Andrew’s 18-Month Etanercept Update: Fatigue, Function, and What the Research Says
18 months later, Andrew shares what improved after etanercept fatigue, function, and the tough questions raised by the PESTO trial.
Highlights:
00:00 Introduction and Background
06:15 Exploring Treatment Options
08:59 Stroke Etanercept Injection And It’s Impact
12:14 Research Findings and Controversies
17:59 Conversations with Other Survivors
23:26 Reflections on Treatment and Guilt
Transcript:
Stroke Etanercept Injection – Introduction and Background
Bill Gasiamis (00:00)
Hey again there everyone. Welcome back to the Recovery After Stroke podcast. Before we get started, a quick thank you to everyone who supports this podcast on Patreon. Your support helps cover hosting costs and after more than 10 years of doing this largely solo, it’s what helps me keep showing up for stroke survivors who need hope and real conversations. A huge shout out to everyone who comments on YouTube, leaves reviews on Spotify and Apple podcasts.
has bought my book, The Unexpected Way That a Stroke Became the Best Thing That Happened, and even the folks who don’t skip the ads, thank you. All of it helps this podcast reach the people who are searching for answers late at night when recovery feels heavy. Now today’s episode is a follow-up many of you have asked for. Andrew Stopps is back, and we’re talking about stroke and etanusept injections 18 months on.
We’ll unpack what changed for him, what’s continued to improve and how he processed the PESTO trial results that found Etanercapt wasn’t more effective than the placebo. If you’re considering this treatment or you’re trying to make sense of conflicting stories and research, this conversation will help you think more clearly without hype and without fear. All right, let’s get into it.
Bill Gasiamis (01:17)
Andrew stops. Welcome back.
Andrew (01:20)
Thank you for having me. It’s good to
back.
Bill Gasiamis (01:22)
It is so good to have you back. The last time we spoke, was March 26, 2024. At least that’s the date that I uploaded the podcast
Andrew (01:30)
it would
have been before that even, probably a couple of weeks before that.
Bill Gasiamis (01:34)
Yeah, something like that. So a good 18 months since we last spoke. And the original reason why you reached out and kind of we connected was I think because you had found my podcast, I had maybe had a couple of conversations about Etanercept like, and I had no idea what it was, how it worked, if it worked. And then you reached out and said, hey, I’ve had this injection. I’ve tried it. Why don’t connect about it?
Andrew (01:36)
So a good 18 months.
Bill Gasiamis (02:03)
And then we connected and we had a really great conversation and that interview has had like 19 and a half thousand views since then. And then what’s been happening a lot about that interview is heaps of people have reached out to me to say, can I speak with Andrew? Can you connect me with Andrew?
Andrew (02:23)
And he’s people reached out to me because of that. And also they found me on the interwebs somehow and contacted me that way. So I’ve probably been spoken now, well over 50 people.
Bill Gasiamis (02:40)
Wow, man, that is fascinating. So and what I love about it is that we put out information. What we hope is we hope people make a more informed decision. Right. That’s kind of the idea is like, how do I help people make people make a more informed decision, especially when I haven’t experienced something and I’m trying to get across the benefits or the pitfalls or, you know, what to avoid on a product. It’s just impossible. But
You were very gracious as well as you. I’ve interviewed, by the way, a bunch of other about Etanercept. And one of them was Dwayne Simple. Dwayne also gets a few people who I sent to him that are in Canada because Dwayne is in Canada. He’s had Etanercept and it worked out for And then I’ve spoken to another lady from Australia, Karen.
who also a shot or two of Etanercept and had positive results. But of course, Etanercept is extremely controversial. And one of the challenges with it is that it doesn’t work for everybody. And there’s only one way of knowing if it’s going to work is to go and get the injection to pay the money and then to kind of roll the dice and see what happens. Now, that’s what we’re going to talk about today. But before we talk about the new
Andrew (03:37)
Mm-hmm.
Mm-hmm.
Bill Gasiamis (03:58)
research that has come out, the PESTO trial research. Before we talk about that, we’ll briefly talk about your condition, where you started. We’ll have a real short version of that, where you started, what happened, and then how you ended up overseas experiencing Dr. Tobinick’s procedure, and then update us on what happened in the last 18 months.
Andrew (04:17)
Okay, so I had my stroke exactly four years ago last Thursday. So I’m a four year old stroke survivor now. And my most damage was done to my right side. So I had no use of my right arm or hand at all. My right leg was weak, but it was okay. But my right foot just fell. I had a slight speech impediment.
But otherwise physically that was really it for the stroke. And I worked really hard to get myself walking again as quickly as I could. And so when I got home I could walk but I’d had an elastic extension on my shoe to help keep my foot up. And I…
From that moment, I was looking for ways to complement my rehab to help me recover fully from the stroke because the doctors and people in the hospital, no one could say to me like how long, how I was going to be, how much recovery, what I could expect, like anything. was just everyone’s unique. And I understand that, but there was a ⁓ lack of like hope from their perspective.
So the first thing we did when we got me home was I’d heard, well, I knew that hyperbaric chambers helped healing. And I knew that because I had a, previously had a brain tumor and I used hyperbaric to help me heal from that. It was really, really good. So we hired one, we rented one for three months and had a soft shell chamber at home, which I went in every day.
for 90 minutes and it was fantastic. I can’t say how, if that physiologically helped because I don’t have access to an MRI at home or anything. Yeah, I can’t measure it, but it did wonders for my mental health. Like it was brilliant because for an hour and half every day, I got to sit in this nice warm cocoon shell, they do not over me.
Bill Gasiamis (06:01)
You can’t measure it.
Exploring Treatment Options
Andrew (06:15)
and listen to really nice music and breathe in almost, you know, pure, very heavily oxygenated air. And so it was like meditation for an hour and half. And the hour and a half went just like that. It was so quick. And I was really sad to have to, you know, give it up after three months. But yeah, it very much helped with my mental health during that time. And I mean,
It’s hard to say if it helped me physically, but I certainly got back my ability to move my foot. My arm was another beast though, and that took a long time. That took about two months before it even moved slightly before I could just, you know, move it up and down. So getting back the function of my arm was a longer process. So I kept researching online and finding, you know, other ways that I could help myself to recover.
That’s when came across the 60 minutes interview with Dr. Tobinick and the clinic and the lady from Australia.
Bill Gasiamis (07:17)
Which
by the way, 60 minutes has taken down. You can only find that on Dr. Tobinick’s YouTube channel now. Yeah, right. So that’s interesting just as a thing that I observed that people might find interesting as well to hear. It doesn’t mean anything perhaps.
Andrew (07:24)
really? Interesting.
Yeah, I mean, yeah, can be anything anyway, so I found that I watched it. I was really really inspired and I thought well I’ve got to know that I have tried everything like if this is how I’m going to be and this was After one year and I was told that you know after three months or That pretty much what I had after three months was was how I was going to be so
I figured after one year, I’ve got to try everything. And so I crowdfunded and had about 30 or 1000.
Bill Gasiamis (08:13)
You raised how much?
US, New Zealand dollars.
Andrew (08:22)
Yes, so that was to that was to fly that was for the flights accommodation the shots like the whole the whole package And yeah, and we flew out in in February Last last year 2025 Was it last year? can’t remember
Bill Gasiamis (08:37)
I did
20, 24, 18 months ago.
Stroke Etanercept Injection And It’s Impact
Andrew (08:40)
2024. And yeah, had the shot and it was it was amazing how fast I found things start to to wake up and recover. By then I had had more movement in my arm, but my hand was very sluggish. And I really didn’t have any fine motor control at all.
⁓ So yeah, that was the 32nd story of Andrew’s stroke recovery.
Bill Gasiamis (09:04)
Yeah, that’s a cool story. So we did a full deeper dive interview for Andrew’s story, an hour and 18 minutes worth of conversation. And the link to the original interview with Andrew about Etanercept will be available in the show notes, right, and in the YouTube description of this video. So anyone who wants to go back and watch that can do that as well. Now, like I said, it’s had 19,000 views.
It’s 521 likes and it has just a ton of comments, just a ton, a ton of comments. Now, one other thing that has happened since then is I haven’t been able to find people who are willing to talk about Etanercept who did not have positive results when they went to Dr. Tobinick’s clinic. just, people don’t want to be interviewed if it’s about that. It seems as though it’s been really hard, right? So.
I can’t give this balanced view of here’s somebody who has had good results, here’s somebody who hasn’t had results. They comment on the YouTube comments and they send me emails about it, but they don’t really tell me whether or not they will join me on the podcast to discuss it properly. recently the Griffith University study came out about Perispinal Etanercept and it had some positive results. It didn’t find
that it was able to help restore certain functions, et cetera, but it did have an impact on pain relief for some people. Now, after that, the highly anticipated study was the one from the Flory Institute here in Australia called the PESTO trial. I’ll share my screen and I’ll put it on the screen while we chat about it, right? We’re gonna chat about what if.
what it found, Andrew, just so that we can bring people up to speed so they can just hear a conversation about it.
Bill Gasiamis (10:50)
We’ll be back with more of Andrew’s story in just a moment, but if you’re listening right now and you feel stuck, want you to hear this clearly. Recovery isn’t a three month window. It’s not even a one year window. Your brain can keep adapting for a long time. And the real challenge is learning how to keep hope without putting all your hope in one thing. In the second half of this episode, Andrew shares what actually lasted 18 months on. What still improved over the time.
And we’ll talk about the biggest question. If the PESTO trial says the Etanercept shouldn’t work better than the placebo, then why do some people still report a night and day difference?
Bill Gasiamis (11:30)
OK, so this is the PESO trial. Now, I interviewed recently ⁓ Vincent Thijs the doctor who headed the study. but the Flory Institute is basically
reporting on his findings. He has presented these findings at stroke conferences around the world. And what was interesting was that this study started in, I think, 2018. And then because of COVID had to be paused, amongst other things. And then finally, all the research was reviewed and it became available at the beginning of 2025. And then it’s been out probably for about seven or eight months now.
Stroke Etanercept Injection Research Findings and Controversies
And what they found was that the, and they’re being a little bit provocative here calling it a miracle cure, but what they found was that a perispinal etanusept, the arthritis drug, ⁓ was not effective in treating people that were experiencing symptoms because of a stroke anymore.
than the placebo. So what they found was that the people on the placebo who ⁓ received the placebo, 56 % of them had a positive result from the placebo as opposed to less than 56 % of people who were actually using the Etanusept. And the reason being, they say, is because the drug doesn’t have the capability of crossing
the blood-brain barrier to get to where the ⁓ inflammation is and to actually ⁓ decrease the inflammation. In arthritis, for example, the inflammation is in the joints, which are not part of the brain. There is no blood-brain barrier or some barrier that stops the atanasip from going there. And therefore, when people get injected to experience relief from ⁓
the symptoms of rheumatoid arthritis, they do experience that relief sometimes almost immediately, et cetera. And ⁓ as a result of that, the guys published the study and basically concluded that it is not effective and more research needs to be done to understand why or why not it works for some people and why it doesn’t for others. And I’ve had a couple of
kind of ideas since then. And I’ll stop sharing my screen now because we can go back to just you and I, Andrew. And I’ve had some ideas as to how do I then talk to people about that, right? So I know I’ve interviewed Andrew, five other people that I’ve interviewed at least who said they had a positive result. And I should tell people there’s people who had a positive result, right? And then there’s the other people on the other side of the spectrum, which are really hostile saying like, it’s snake oil.
My idea is that even if you go there and you receive Etanercept and it works when it’s not meant to and it’s just a placebo working because you’ve got high expectations of it working. You need it to work. You’ve invested $30,000. You you’ve traveled half a way across the world. Even if it works and it didn’t cross your blood brain barrier, to me, that’s a tick, right? That’s like.
It worked fantastic. People improve their function. They got their life back. The body is very powerful. It can achieve amazing things. Who cares how it did that? A B, your blood brain barrier might be compromised. So there is a thing called leaky gut. We’ve heard about leaky gut. It is a compromised gut barrier which allows toxins to escape the gut and get into the blood.
and causes a lot of autoimmune conditions. The same thing is possible for the blood brain barrier. If you’ve got a really compromised blood brain barrier because you’ve had a stroke or you’ve had brain surgery or something like that, it’s possible.
Andrew (15:47)
we’ve had
radiation therapy, which I have.
Bill Gasiamis (15:50)
or you’ve had radiation therapy because of previous medical conditions, et cetera, then there could be a more permeable blood brain barrier, which enables the Etanercept to actually penetrate it and get to the root cause of the stroke inflammation or the root location of the stroke inflammation. And therefore, some people through no… ⁓
you know, through no fault of their own, I either have a really healthy blood brain barrier and Etanercept can’t cross it or have a compromised blood brain barrier and Etanercept can cross it. And therefore they experience positive results. But the issue then is how do we know? How can we work that out for people, you know, before they go and drop 30 grand on a treatment that they may not get a result for. Now.
That’s my thinking about it, right? But I still send people to you and I still send you these studies as they come up, just so that I can say, Andrew, I need your feedback. I need you to talk to me. I need you to tell me something. Like, where do you stand on all of this? I’m going to keep sending people to you who reach out to me to speak to Andrew because they’re interested. So like, how does that conversation go in your head and then with the people that you connect with?
Andrew (17:09)
Okay, so having having been a teacher, career teacher, I’m really careful of what I advise people like I would be really careful what I advise my students. So I never say to people, yes, you’ve to do it because it worked for me. God, do do it, do drop it again. I never ever say that I tried to give them the balance for you. And and even though it worked for me, I make sure it’s I’m very clear that they understand that it worked for me, but it might not work for you.
Conversations with Other Survivors
So you’ve got to go like I did and don’t go with any expectations. Just go, just know that you’ve tried everything you can to help your recovery. That’s all. And so that’s how that conversation usually goes. They ask me lots of questions about what it feels like, what the place is like, what Dr. Tobinick was like.
just all the sort of the mechanical questions around it. But generally, it’s, I don’t know whether I should go. And it’s also, I want to go, but my family don’t want to go. And I can’t go because they don’t support me, because they think it’s snake oil.
Bill Gasiamis (18:18)
Okay, that’s an interesting conversation. So I often try and advise stroke survivors to be careful who they share information with. Not saying that you shouldn’t share information with your loved ones and your family members after a stroke. What I’m saying is like, even in situations where things are not that critical, where you’re not talking about spending 30 grand, I’m just talking about people who have the experience sometimes Andrew where they say, oh, I wanna try this meditation thing, you know, and.
somebody hasn’t meditated before, thinks it’s woo woo and says, don’t worry about that stuff. What do you wanna be? Like a hippie or something? There’s those types of people who hang out in our world who do intervene with things that we’re curious about and we wanna kind of shift away from perhaps old habits to new habits, especially around alcohol as well. I found that people would go, aren’t you gonna have one drink?
Like what’s the point of going out if we can’t have a drink? It’s like, dude, like I’m a completely different version of myself. I’ve had a stroke, I can’t drink. But understanding how to deal with people like that is a bit of an issue. So then you’ve spoken to about 50 people who have either gone or not gone. Like have some people gone and contacted you and said it worked and some people gone and contacted you and said it hasn’t worked.
Andrew (19:40)
Yes. Yep. And I’ve. The contact normally starts to go quiet once they actually go, whether it works or doesn’t work. And I usually just get a quick message saying, hey, I went and it worked and that’s great. And, you know, have a good life. You know, I don’t want to keep bugging them. But the people that it didn’t work for have been pretty gutted.
Bill Gasiamis (20:03)
Right.
Andrew (20:04)
Because I’ve, you know, even though I’ve tried not to make it something they hang all their hopes on, you know, they still do to a certain extent. And so they come back pretty, not bitter or angry at me, just at the situation, that it didn’t work. And they don’t know where to turn next.
Bill Gasiamis (20:22)
So they might’ve had all their hopes kind of set on this working, all their eggs in one basket, so to speak, didn’t work and now they feel like maybe they’ve lost hope or they haven’t got another alternative or option.
Andrew (20:35)
Yeah, yeah. And what I’ve learned in the last 18 months is that your stroke recovery doesn’t stop. There’s no end date. So when you’re told in hospital that after three months that’s what you’ve got, no, no. doesn’t, like your brain is constantly evolving and working and learning and repending itself.
If you want to work something and exercise something and rehab part of your body, eventually it’s going to improve. Even if it’s only by a little bit and it’s really slow, it’s going to improve.
Bill Gasiamis (21:09)
Yeah. So you’ve been 18 months down the track. One of the questions I got asked recently was, does the procedure need to be repeated every couple of years? Does it last? What have you found about how you have changed or experienced your body in the last 18 months? ⁓ Tell us first what you got back and how quickly and then what that led to, what you were able to achieve as a result of what you got back.
Andrew (21:34)
Yeah, okay. So, um, immediately the things that came back is is that my cognitive fatigue like just just lowered like straight away. Um, and I was when I had the shot, I was exhausted because they take it through a battery of tests. So I like was an hour and a half of tests. And so I was I was done. I was ready to go lie down. Um,
And that just lifted like straight away and it didn’t come back. I still get cognitive fatigue now, but I really have to be doing stuff that that really taxes my brain to do it. And or I have to be really tired. But before I had the injection, I would get I would be on the verge of fatigue all the time.
So it wouldn’t take much to push me over into it. So that was gone. I had a ⁓ really nasty cramp in my right calf that never went away. That went away. That literally just dialed down as I was sitting there after the shot. the emotional control also came back.
Bill Gasiamis (22:42)
Uh-huh.
Andrew (22:43)
which was good. Now, for me, I was, for the first shot, I was only in Florida for 24 hours. So we flew down from Memphis and I had the shot the next day and then we flew back that afternoon.
So when we flew down, because of my cognitive fatigue and sensory overload, I had eye mask, had noise-canceling headphones, had like, lorazepam in my pocket. Like, you know, I had all the, you know, all this stuff to, you know, save my senses. When we flew back, I didn’t need any of it, and that was 24 hours later. So I just stood in the airport like any other traveler. And that was…
Reflections on Stroke Etanercept Injection Treatment and Guilt
Bill Gasiamis (23:26)
Yeah.
Andrew (23:28)
That was the biggest sign that something profound had happened.
Bill Gasiamis (23:33)
Yeah.
Andrew (23:34)
The other thing was that my hand, my right hand went from feeling like it was sort of like moving in molasses really slow to loosening up and being more independent. And I found only a month ago that I was able to start to play scales on my clarinet again. So I can move my fingers independently. I could cover the holes with my clarinet here.
Bill Gasiamis (23:52)
Wow, man.
Andrew (23:57)
I can the holes in my fingers. It’s something that I haven’t been able to do since the stroke. To be able to play the thing, to be able to just play a scale, just says to me, at some point in the future, you’re gonna be able to play the thing again.
Bill Gasiamis (24:11)
So things are still improving. Your function is changing still. you, being able to play the clarinet, would you can attribute that to a tenor sept that long ago or just things getting better?
Andrew (24:26)
I think because it was if I come home and was able to play the clarinet then I would have a definite causality you know so I would rather say the definite yeah it was a tenor step that did it because before I went away I couldn’t even you know I couldn’t pick up things one more right hand so but because it’s been 18 months I think it’s because that that skill has come back
Bill Gasiamis (24:50)
Yeah, okay. What about work wise? Were you working or not working before the injection?
Andrew (24:57)
No, no. So I was able to go back to relief teaching. The classroom as a music teacher is ⁓ in a high school is too busy and there’s too many moving parts. So that’s not something I’ll be able to do again, at least not in the foreseeable future. And I don’t know if I want to now.
Bill Gasiamis (25:11)
Wow.
Andrew (25:20)
I have done some relief teaching. There are days where I’m in a school and I just feel that it’s a bit too much. And that could be because I had a bad night the night before or it was hot and I couldn’t sleep. And that wasn’t like that before the stroke. yeah, coming up with a new career now has been an interesting journey itself.
Bill Gasiamis (25:41)
Yeah. So there isn’t a need for another injection or anything like that. Nobody ever told you about another injection or what will happen in two years or anything like that.
Andrew (25:51)
No, If I can go there and get one, if I think it’s going to make even more improvement, because I had improvement from, you know, from the first. But yeah, there was no compelling sort of needs to go back. And I’m thinking that I probably would like maybe to have a second one, a second trip there and have.
having the shot but ⁓ I don’t know I’ll see how my improvement goes.
Bill Gasiamis (26:20)
Yeah, okay.
Andrew (26:22)
It’s so hard to One of the things I did do, I had an MRI about two months ago. And it was an MRI to check the status of my tumor and to see where it was. And obviously they also had a look at the stroke site. And comparing the stroke site now to when it was taken when I had the stroke.
there’s a day and night difference. Whereas I had a hole in my brain after the stroke, all I had was a little bit of glial, called glial scar tissue. So scar tissue of the brain cells, a little white line in my brain. ⁓
Bill Gasiamis (27:08)
as opposed to
a round circle of what appeared to be offline or dead brain cells. Yeah, which, you know, it sounds like to me, it’s like where the inflammation was, that area they usually call, they often call, sometimes called the penumbra, which is the area that’s able to be rehabilitated, which is around the site of the stroke, which is offline but not dead, which HBOT targets, the right kind of,
Andrew (27:15)
Yes. Yeah.
Bill Gasiamis (27:38)
hyperbaric oxygen therapy can target those as well and try and reduce them. So day and night, like a proper difference between one and the other.
Andrew (27:47)
Yeah, I was expecting to see when I saw the scan, know, where my brain tumor was and also the big hole and the hole was gone and there was just this like, this is a little, a little line there with scar tissue.
Bill Gasiamis (28:01)
Yeah, fabulous. How long has the brain tumor been there for?
Andrew (28:05)
20 years.
Bill Gasiamis (28:07)
Okay, and what does it do just sort of sit around and ⁓
Andrew (28:10)
Yeah, so ⁓ what happened is it just gradually grows bigger and bigger and bigger and then eventually if you don’t get it treated, it crushes your brain stem and that kills you. So I had mine irradiated 20 years ago and it’s got growing and it’s just started dying off and now it’s just like a…
dead mess in there and they check every four years to make sure it hasn’t done anything naughty and It hasn’t so they actually said of this last scan look it hasn’t changed in the last 12 years, so no more scans
Bill Gasiamis (28:41)
I hear you, okay. So it’s benign now.
Andrew (28:46)
Yeah.
Bill Gasiamis (28:47)
Yeah, okay. So you’ve through the rigor, mate. You’ve had an interesting neurological experience,
Andrew (28:54)
Yeah, yeah, yeah, yeah, feels like my brain’s out to get me.
Bill Gasiamis (29:00)
Yeah. Well, seems like the interventions have been really helpful in prolonging your life and then your life experience, like how you go about life. So as far as you’re concerned, like it’s all it’s all. You know, it’s been a good outcome, both both interventions.
Andrew (29:19)
Yes. Yeah. Yeah, I think so. I mean, my biggest challenge this year has actually not been the stroke or the brain tumor, but it’s been the medications for stroke to prevent another one. So my stroke was caused by an overactive adrenal or adrenal glands producing too much aldosterone.
Bill Gasiamis (29:31)
What man which man say you want?
Andrew (29:43)
And that was only diagnosed and found last year. So What was happening is that my body was? Was was keeping salt it was it was send my blood pressure sky-high and then crash it down
And for 10 years we thought that was anxiety. But what it was was that because my blood pressure wasn’t consistently high, I could go to the doctors and I could be normal. And then my other doctors didn’t have high blood pressure. It was not consistent. So I was just treated for anxiety and given a sort of a low dose blood pressure medication.
But actually what it was is both glands like over producing this hormone and that’s what gave me the stroke. So they’ve they’ve given me a hormone suppressant which helps, but they’ve been trying to.
to juggle multiple types of blood pressure medication to also bring my blood pressure down to a consistent normal. And so up until about three weeks ago, my blood pressure was still all over the place. And they had me on a really nasty cocktail at one point this year where I literally could not function. I couldn’t even get up. It suppressed my whole system so much.
that every time I stood my blood pressure would drop 50 points and I would almost pass out. So I was like a zombie. ⁓ It was just the combination of too many blood pressure medications at once. And finally, I’ve seen a different specialist and he changed my medication and I’ve just got one little pill at the minimum dose and it’s actually stabilized my blood pressure to normal.
Bill Gasiamis (30:51)
All right.
Righto, that’s good.
Andrew (31:18)
So like when I took it today, was 122 over 72. So it hasn’t been like that for I don’t even know how long.
Bill Gasiamis (31:25)
Yeah.
Fantastic, what kind of stroke did it cause?
Andrew (31:31)
are ischemic, so a clot.
Bill Gasiamis (31:34)
⁓ huh, okay. Wow, man. What an interesting journey you’ve been on. And this insight into Etanercept and how and why it might work for some people and not for others is probably helpful for it again, for a whole bunch of people to hear and kind of get a better understanding about scientifically speaking, Etanercept is not a viable solution for people who have had stroke and
there will be some people who will become all, what’s the word? Like they will, they’ll be all, this is snake oil stuff. And then there will be people who brag about it as being the best thing they’ve ever done, which seems to be kind of the camp that you’re in. I think, no, no, no, no. I mean, it’s one of the best things you’ve ever done with regards to your stroke recovery, right?
Andrew (32:18)
I don’t feel like complaining about it though.
Yeah, yeah, and I found that when I got the results for the for the pesto test I really had to do a lot of soul searching because because I couldn’t explain to myself Why it seemed to have worked for me and yet the study was saying hey, doesn’t really have any effect and and I had to to
Bill Gasiamis (32:36)
Wow.
Did you feel remorse or guilt about that? Wow, Wow.
Andrew (32:47)
Yes, very much. I felt like a fraud.
Because why? I couldn’t explain how I had such a huge night and day difference. And that couldn’t be placebo and it’d be still working 18 months later.
Bill Gasiamis (33:08)
Yeah, I think our hunch about the blood brain barrier is where the research needs to go. And I don’t know how you investigate the blood brain barrier. But if you can go there and investigate the blood brain barrier and if you can understand who has a compromised blood brain barrier and therefore.
Andrew (33:15)
Yeah.
Bill Gasiamis (33:31)
due to a compromised blood-barrier barrier, a candidate for a Etanercept I think that’s kind of where it needs to go. Because the biggest issue that people have with clinics who offer a Etanercept perispinally, like Dr. Tobinick’s, the biggest issue that people have that makes it hard for them to make a decision is will I be the right candidate? Will I be the one who will it work for? Or will I be the one that it doesn’t, you know? But I…
I find it very fascinating that you would respond that way, that you would feel guilty and remorseful that it worked for you and the pesto child says it shouldn’t have.
Andrew (34:10)
I feel guilty that it worked for me and didn’t work for someone else. You know, as well. Yeah, yeah, I mean, it’s like survivor’s guilt in a way. Yeah, that’s that and that’s how I felt. so the way I’ve thought of it is, well, OK, if it was placebo, it worked for me.
Bill Gasiamis (34:14)
Yeah.
just wishing for the best for everybody.
Yeah, I can relate to that. Yeah.
Andrew (34:37)
like it just it worked for me whatever it was it worked for me so and that’s that’s that’s all I can all I can say but I think this blood brain theory is is a good one and I would like to I would like to research and understand what what makes the brain leaky like what what events can make your brain
Bill Gasiamis (34:41)
Yeah. Yeah.
Andrew (35:00)
⁓ better suited to receiving Etanercept Like for me, probably the main cause could have been the fact that I had radiation on my brain years ago.
Bill Gasiamis (35:05)
Yeah.
Andrew (35:13)
Or it could be that I have a high blood pressure for 10 years. Or it could be I have my appendix out when I’m 17. But I would like to do some research into what it is, what factors make people more likely to have a leaky brain.
Bill Gasiamis (35:17)
Who knows?
Yeah, I think that’s a great thing. I want to research that too, because I have known about it. I’ve understood it. I appreciated that I might be somebody who has had a leaky brain because of the strokes that I experienced, the brain surgery and all the stuff that I went through. And I know that if you restore the blood brain barrier, you can really decrease the fatigue that happens to people after a stroke. And you can make it impenetrable again to toxins.
and heavy metals and all that kind of stuff, which is often the cause of real chronic neurological fatigue, even in people who haven’t had a stroke, who are, quote unquote, normal. So that’s fascinating. I really appreciate your continued willingness to have conversations about this topic and sharing your story more than once with me. And then also being
being an ear to the people who are curious about whether or not they should go down this path and then kind of just like, you know, being honest about your story, sharing what happened to you, what you experienced and even your own reservations because I don’t think you have anything to, and you probably know this cognitively anyway, right? You don’t have anything to be guilty about or feel bad about or.
anything like that. But I understand why emotionally you might go down that path because you’re a guy that cares deeply for other people. You appreciate how hard it is for people to go through stroke and you wish them the same solution or other solutions that you had so that we don’t have to suffer. I know exactly what’s behind it.
Andrew (37:08)
Yeah, yeah, that’s exactly right. Yeah.
Bill Gasiamis (37:12)
Yeah. Well,
hopefully this continues the conversations to give people more things to think about. Leave us a comment in the YouTube comments section. Reach out via email. Yeah, drop us a comment. Reach out to us and we’d be happy to continue the conversation, support you, guide you. Just being here and I don’t know, help you make a more informed decision. That’s all we can do. We’re not going to suggest.
Andrew (37:35)
Yeah, definitely.
Bill Gasiamis (37:41)
that you should or should not go and experience Perispinal Etanercept one way or another.
Bill Gasiamis (37:46)
Well, that was Andrew Stopps again. What a fascinating conversation. If today’s episode connected with you, I’d love to hear your thoughts in the YouTube comments, especially if you’ve looked into Etanercept Try it. I decided not to. Your experience can help someone else make a more informed decision. And if you found this helpful, please subscribe on YouTube and follow the podcast on Spotify or Apple podcasts. Reviews and comments genuinely help more.
stroke survivors find these conversations. If you want to go deeper, you can grab my book at recoveryafterstroke.com slash book. And if you’d like to support the podcast and help keep it going, you can join us on Patreon at patreon.com slash recovery after stroke. Thanks again for being here. You’re not alone in this recovery journey and I’ll see you in the next episode.
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Stroke etanercept injection 18 months on: what lasted, what changed, and what Andrew learned after the PESTO trial
Some stroke survivors are told a version of the same sentence in hospital: “After three months, what you have is what you’ll have.”
Andrew Stops didn’t buy it, not because he was naïve, but because he needed a reason to keep showing up for rehab when nobody could give him a straight answer about what “recovery” would look like.
Four years after his ischemic stroke, and 18 months after a stroke etanercept injection, Andrew is back to share what improved quickly, what continued to evolve, and how he made peace with research results that didn’t match his lived experience.
The question so many survivors are really asking
When people reach out about perispinal etanercept (often discussed as “etanercept after stroke”), they’re rarely asking for a science lecture.
They’re asking:
Those questions are valid. They’re also heavy, because the stakes are high: the treatment is expensive, travel can be intense, and the emotional cost of hoping—then not getting results—can be brutal.
Andrew’s baseline: what his stroke took at the start
Andrew’s stroke most impacted his right side. Early on, he had:
He worked hard to walk again quickly, using practical supports early (including an elastic extension on his shoe to help keep his foot up). But his bigger mission was clear: find ways to complement rehab—because medical staff couldn’t give him a timeline, and he felt a “lack of hope” from their perspective.
That’s a common moment for survivors: you’re doing the work, but you also want a map.
The “complement” phase: why hyperbaric helped, even without perfect measurement
Before etanercept entered the picture, Andrew leaned on what had helped him before: hyperbaric oxygen therapy (HBOT). He had a history of a brain tumor and had used hyperbaric previously for healing, so he rented a soft-shell chamber at home for three months and went in daily for 90 minutes.
Andrew was careful with his claims: he couldn’t measure physiological changes in real time at home. But he could measure something important, his ability to cope.
HBOT became a daily “warm cocoon” where he could breathe oxygen-rich air and calm his nervous system. For him, that mental-health benefit wasn’t a side note. It was fuel.
And when you’re rebuilding your life after stroke, fuel matters.
The etanercept decision: hope, uncertainty, and the reality of the “roll the dice” problem
Andrew discovered perispinal etanercept through a media story about Dr. Tobinick’s clinic, and after about a year, decided he needed to know he’d tried everything he reasonably could.
He crowdfunded to afford the trip and treatment.
That detail matters because it introduces the single biggest ethical challenge around treatments like this:
Even if you try to stay balanced, it’s hard not to hang hope on something that costs time, money, energy, and pride.
Andrew doesn’t tell people to go. In fact, when people contact him now (he’s spoken to more than 50), he’s careful:
That’s responsible guidance from someone who understands how fragile hope can become when it’s under financial pressure.
What changed fast (and what stayed improved 18 months later)
Andrew’s report of early changes is striking not because it proves causality, but because it describes specific, functional shifts:
Cognitive fatigue and sensory overload
He noticed cognitive fatigue dial down immediately. He still experiences it, but it takes far more to trigger now.
The most vivid example: on the way to the clinic, he used an eye mask, noise-cancelling headphones, and had medication ready for overload. On the return flight 24 hours later, he didn’t need any of it. He stood in the airport like any other traveler.
Pain and cramping
A persistent cramp in his right calf eased significantly.
Emotional regulation
He noticed improvement in emotional control, something many stroke survivors quietly struggle with and often feel ashamed about.
Hand function and fine motor control
His right hand went from feeling like it moved “in molasses” to loosening up.
And here’s where the “18 months on” part becomes powerful: Andrew recently discovered he could play scales on his clarinet again, covering holes with independent finger movement, something he hadn’t been able to do since the stroke.
That’s not framed as: “etanercept did this.” It’s framed as: recovery kept unfolding.
“Your stroke recovery doesn’t stop. There’s no end date.”
The PESTO trial: when research challenges your story
Then came the PESTO trial results, which (as discussed in your episode) reported that etanercept was not more effective than placebo in the studied group.
This is where Andrew’s story gets even more human.
He didn’t just shrug it off.
He described feeling guilt, even fraudulence, because he couldn’t reconcile the research headline with his lived experience.
That response is deeply relatable: when something helps you, and others don’t get the same outcome, it can feel like survivor’s guilt, especially when people have spent enormous money and emotional energy.
A careful theory: the blood–brain barrier question
In your conversation, Bill raises a hypothesis, not a proven conclusion that deserves careful attention:
If etanercept struggles to cross the blood–brain barrier in general, could certain people have a more permeable barrier due to factors like stroke, surgery, or radiation therapy (which Andrew had)?
Andrew himself wonders if radiation could be part of his “why.”
This isn’t a sales pitch. It’s a research direction, a possible explanation for why outcomes might vary so dramatically between people.
If that line of thinking ever becomes clinically actionable, it could change the whole decision-making process for survivors, because the question would shift from “roll the dice” to “are you likely to be a candidate?”
What a stroke survivor can take from this without being sold to
If you’re reading this because you’re considering a stroke etanercept injection, here are the grounded takeaways from Andrew’s 18-month update:
If you want ongoing encouragement and tools to navigate recovery (and the emotional complexity that comes with it), Bill’s work is built for that:
This blog is for informational purposes only and does not constitute medical advice. Please consult your doctor before making any changes to your health or recovery plan.
Andrew’s 18-Month Etanercept Update: Fatigue, Function, and What the Research Says
18 months later, Andrew shares what improved after etanercept fatigue, function, and the tough questions raised by the PESTO trial.
Highlights:
00:00 Introduction and Background
06:15 Exploring Treatment Options
08:59 Stroke Etanercept Injection And It’s Impact
12:14 Research Findings and Controversies
17:59 Conversations with Other Survivors
23:26 Reflections on Treatment and Guilt
Transcript:
Stroke Etanercept Injection – Introduction and Background
Bill Gasiamis (00:00)
Hey again there everyone. Welcome back to the Recovery After Stroke podcast. Before we get started, a quick thank you to everyone who supports this podcast on Patreon. Your support helps cover hosting costs and after more than 10 years of doing this largely solo, it’s what helps me keep showing up for stroke survivors who need hope and real conversations. A huge shout out to everyone who comments on YouTube, leaves reviews on Spotify and Apple podcasts.
has bought my book, The Unexpected Way That a Stroke Became the Best Thing That Happened, and even the folks who don’t skip the ads, thank you. All of it helps this podcast reach the people who are searching for answers late at night when recovery feels heavy. Now today’s episode is a follow-up many of you have asked for. Andrew Stopps is back, and we’re talking about stroke and etanusept injections 18 months on.
We’ll unpack what changed for him, what’s continued to improve and how he processed the PESTO trial results that found Etanercapt wasn’t more effective than the placebo. If you’re considering this treatment or you’re trying to make sense of conflicting stories and research, this conversation will help you think more clearly without hype and without fear. All right, let’s get into it.
Bill Gasiamis (01:17)
Andrew stops. Welcome back.
Andrew (01:20)
Thank you for having me. It’s good to
back.
Bill Gasiamis (01:22)
It is so good to have you back. The last time we spoke, was March 26, 2024. At least that’s the date that I uploaded the podcast
Andrew (01:30)
it would
have been before that even, probably a couple of weeks before that.
Bill Gasiamis (01:34)
Yeah, something like that. So a good 18 months since we last spoke. And the original reason why you reached out and kind of we connected was I think because you had found my podcast, I had maybe had a couple of conversations about Etanercept like, and I had no idea what it was, how it worked, if it worked. And then you reached out and said, hey, I’ve had this injection. I’ve tried it. Why don’t connect about it?
Andrew (01:36)
So a good 18 months.
Bill Gasiamis (02:03)
And then we connected and we had a really great conversation and that interview has had like 19 and a half thousand views since then. And then what’s been happening a lot about that interview is heaps of people have reached out to me to say, can I speak with Andrew? Can you connect me with Andrew?
Andrew (02:23)
And he’s people reached out to me because of that. And also they found me on the interwebs somehow and contacted me that way. So I’ve probably been spoken now, well over 50 people.
Bill Gasiamis (02:40)
Wow, man, that is fascinating. So and what I love about it is that we put out information. What we hope is we hope people make a more informed decision. Right. That’s kind of the idea is like, how do I help people make people make a more informed decision, especially when I haven’t experienced something and I’m trying to get across the benefits or the pitfalls or, you know, what to avoid on a product. It’s just impossible. But
You were very gracious as well as you. I’ve interviewed, by the way, a bunch of other about Etanercept. And one of them was Dwayne Simple. Dwayne also gets a few people who I sent to him that are in Canada because Dwayne is in Canada. He’s had Etanercept and it worked out for And then I’ve spoken to another lady from Australia, Karen.
who also a shot or two of Etanercept and had positive results. But of course, Etanercept is extremely controversial. And one of the challenges with it is that it doesn’t work for everybody. And there’s only one way of knowing if it’s going to work is to go and get the injection to pay the money and then to kind of roll the dice and see what happens. Now, that’s what we’re going to talk about today. But before we talk about the new
Andrew (03:37)
Mm-hmm.
Mm-hmm.
Bill Gasiamis (03:58)
research that has come out, the PESTO trial research. Before we talk about that, we’ll briefly talk about your condition, where you started. We’ll have a real short version of that, where you started, what happened, and then how you ended up overseas experiencing Dr. Tobinick’s procedure, and then update us on what happened in the last 18 months.
Andrew (04:17)
Okay, so I had my stroke exactly four years ago last Thursday. So I’m a four year old stroke survivor now. And my most damage was done to my right side. So I had no use of my right arm or hand at all. My right leg was weak, but it was okay. But my right foot just fell. I had a slight speech impediment.
But otherwise physically that was really it for the stroke. And I worked really hard to get myself walking again as quickly as I could. And so when I got home I could walk but I’d had an elastic extension on my shoe to help keep my foot up. And I…
From that moment, I was looking for ways to complement my rehab to help me recover fully from the stroke because the doctors and people in the hospital, no one could say to me like how long, how I was going to be, how much recovery, what I could expect, like anything. was just everyone’s unique. And I understand that, but there was a ⁓ lack of like hope from their perspective.
So the first thing we did when we got me home was I’d heard, well, I knew that hyperbaric chambers helped healing. And I knew that because I had a, previously had a brain tumor and I used hyperbaric to help me heal from that. It was really, really good. So we hired one, we rented one for three months and had a soft shell chamber at home, which I went in every day.
for 90 minutes and it was fantastic. I can’t say how, if that physiologically helped because I don’t have access to an MRI at home or anything. Yeah, I can’t measure it, but it did wonders for my mental health. Like it was brilliant because for an hour and half every day, I got to sit in this nice warm cocoon shell, they do not over me.
Bill Gasiamis (06:01)
You can’t measure it.
Exploring Treatment Options
Andrew (06:15)
and listen to really nice music and breathe in almost, you know, pure, very heavily oxygenated air. And so it was like meditation for an hour and half. And the hour and a half went just like that. It was so quick. And I was really sad to have to, you know, give it up after three months. But yeah, it very much helped with my mental health during that time. And I mean,
It’s hard to say if it helped me physically, but I certainly got back my ability to move my foot. My arm was another beast though, and that took a long time. That took about two months before it even moved slightly before I could just, you know, move it up and down. So getting back the function of my arm was a longer process. So I kept researching online and finding, you know, other ways that I could help myself to recover.
That’s when came across the 60 minutes interview with Dr. Tobinick and the clinic and the lady from Australia.
Bill Gasiamis (07:17)
Which
by the way, 60 minutes has taken down. You can only find that on Dr. Tobinick’s YouTube channel now. Yeah, right. So that’s interesting just as a thing that I observed that people might find interesting as well to hear. It doesn’t mean anything perhaps.
Andrew (07:24)
really? Interesting.
Yeah, I mean, yeah, can be anything anyway, so I found that I watched it. I was really really inspired and I thought well I’ve got to know that I have tried everything like if this is how I’m going to be and this was After one year and I was told that you know after three months or That pretty much what I had after three months was was how I was going to be so
I figured after one year, I’ve got to try everything. And so I crowdfunded and had about 30 or 1000.
Bill Gasiamis (08:13)
You raised how much?
US, New Zealand dollars.
Andrew (08:22)
Yes, so that was to that was to fly that was for the flights accommodation the shots like the whole the whole package And yeah, and we flew out in in February Last last year 2025 Was it last year? can’t remember
Bill Gasiamis (08:37)
I did
20, 24, 18 months ago.
Stroke Etanercept Injection And It’s Impact
Andrew (08:40)
2024. And yeah, had the shot and it was it was amazing how fast I found things start to to wake up and recover. By then I had had more movement in my arm, but my hand was very sluggish. And I really didn’t have any fine motor control at all.
⁓ So yeah, that was the 32nd story of Andrew’s stroke recovery.
Bill Gasiamis (09:04)
Yeah, that’s a cool story. So we did a full deeper dive interview for Andrew’s story, an hour and 18 minutes worth of conversation. And the link to the original interview with Andrew about Etanercept will be available in the show notes, right, and in the YouTube description of this video. So anyone who wants to go back and watch that can do that as well. Now, like I said, it’s had 19,000 views.
It’s 521 likes and it has just a ton of comments, just a ton, a ton of comments. Now, one other thing that has happened since then is I haven’t been able to find people who are willing to talk about Etanercept who did not have positive results when they went to Dr. Tobinick’s clinic. just, people don’t want to be interviewed if it’s about that. It seems as though it’s been really hard, right? So.
I can’t give this balanced view of here’s somebody who has had good results, here’s somebody who hasn’t had results. They comment on the YouTube comments and they send me emails about it, but they don’t really tell me whether or not they will join me on the podcast to discuss it properly. recently the Griffith University study came out about Perispinal Etanercept and it had some positive results. It didn’t find
that it was able to help restore certain functions, et cetera, but it did have an impact on pain relief for some people. Now, after that, the highly anticipated study was the one from the Flory Institute here in Australia called the PESTO trial. I’ll share my screen and I’ll put it on the screen while we chat about it, right? We’re gonna chat about what if.
what it found, Andrew, just so that we can bring people up to speed so they can just hear a conversation about it.
Bill Gasiamis (10:50)
We’ll be back with more of Andrew’s story in just a moment, but if you’re listening right now and you feel stuck, want you to hear this clearly. Recovery isn’t a three month window. It’s not even a one year window. Your brain can keep adapting for a long time. And the real challenge is learning how to keep hope without putting all your hope in one thing. In the second half of this episode, Andrew shares what actually lasted 18 months on. What still improved over the time.
And we’ll talk about the biggest question. If the PESTO trial says the Etanercept shouldn’t work better than the placebo, then why do some people still report a night and day difference?
Bill Gasiamis (11:30)
OK, so this is the PESO trial. Now, I interviewed recently ⁓ Vincent Thijs the doctor who headed the study. but the Flory Institute is basically
reporting on his findings. He has presented these findings at stroke conferences around the world. And what was interesting was that this study started in, I think, 2018. And then because of COVID had to be paused, amongst other things. And then finally, all the research was reviewed and it became available at the beginning of 2025. And then it’s been out probably for about seven or eight months now.
Stroke Etanercept Injection Research Findings and Controversies
And what they found was that the, and they’re being a little bit provocative here calling it a miracle cure, but what they found was that a perispinal etanusept, the arthritis drug, ⁓ was not effective in treating people that were experiencing symptoms because of a stroke anymore.
than the placebo. So what they found was that the people on the placebo who ⁓ received the placebo, 56 % of them had a positive result from the placebo as opposed to less than 56 % of people who were actually using the Etanusept. And the reason being, they say, is because the drug doesn’t have the capability of crossing
the blood-brain barrier to get to where the ⁓ inflammation is and to actually ⁓ decrease the inflammation. In arthritis, for example, the inflammation is in the joints, which are not part of the brain. There is no blood-brain barrier or some barrier that stops the atanasip from going there. And therefore, when people get injected to experience relief from ⁓
the symptoms of rheumatoid arthritis, they do experience that relief sometimes almost immediately, et cetera. And ⁓ as a result of that, the guys published the study and basically concluded that it is not effective and more research needs to be done to understand why or why not it works for some people and why it doesn’t for others. And I’ve had a couple of
kind of ideas since then. And I’ll stop sharing my screen now because we can go back to just you and I, Andrew. And I’ve had some ideas as to how do I then talk to people about that, right? So I know I’ve interviewed Andrew, five other people that I’ve interviewed at least who said they had a positive result. And I should tell people there’s people who had a positive result, right? And then there’s the other people on the other side of the spectrum, which are really hostile saying like, it’s snake oil.
My idea is that even if you go there and you receive Etanercept and it works when it’s not meant to and it’s just a placebo working because you’ve got high expectations of it working. You need it to work. You’ve invested $30,000. You you’ve traveled half a way across the world. Even if it works and it didn’t cross your blood brain barrier, to me, that’s a tick, right? That’s like.
It worked fantastic. People improve their function. They got their life back. The body is very powerful. It can achieve amazing things. Who cares how it did that? A B, your blood brain barrier might be compromised. So there is a thing called leaky gut. We’ve heard about leaky gut. It is a compromised gut barrier which allows toxins to escape the gut and get into the blood.
and causes a lot of autoimmune conditions. The same thing is possible for the blood brain barrier. If you’ve got a really compromised blood brain barrier because you’ve had a stroke or you’ve had brain surgery or something like that, it’s possible.
Andrew (15:47)
we’ve had
radiation therapy, which I have.
Bill Gasiamis (15:50)
or you’ve had radiation therapy because of previous medical conditions, et cetera, then there could be a more permeable blood brain barrier, which enables the Etanercept to actually penetrate it and get to the root cause of the stroke inflammation or the root location of the stroke inflammation. And therefore, some people through no… ⁓
you know, through no fault of their own, I either have a really healthy blood brain barrier and Etanercept can’t cross it or have a compromised blood brain barrier and Etanercept can cross it. And therefore they experience positive results. But the issue then is how do we know? How can we work that out for people, you know, before they go and drop 30 grand on a treatment that they may not get a result for. Now.
That’s my thinking about it, right? But I still send people to you and I still send you these studies as they come up, just so that I can say, Andrew, I need your feedback. I need you to talk to me. I need you to tell me something. Like, where do you stand on all of this? I’m going to keep sending people to you who reach out to me to speak to Andrew because they’re interested. So like, how does that conversation go in your head and then with the people that you connect with?
Andrew (17:09)
Okay, so having having been a teacher, career teacher, I’m really careful of what I advise people like I would be really careful what I advise my students. So I never say to people, yes, you’ve to do it because it worked for me. God, do do it, do drop it again. I never ever say that I tried to give them the balance for you. And and even though it worked for me, I make sure it’s I’m very clear that they understand that it worked for me, but it might not work for you.
Conversations with Other Survivors
So you’ve got to go like I did and don’t go with any expectations. Just go, just know that you’ve tried everything you can to help your recovery. That’s all. And so that’s how that conversation usually goes. They ask me lots of questions about what it feels like, what the place is like, what Dr. Tobinick was like.
just all the sort of the mechanical questions around it. But generally, it’s, I don’t know whether I should go. And it’s also, I want to go, but my family don’t want to go. And I can’t go because they don’t support me, because they think it’s snake oil.
Bill Gasiamis (18:18)
Okay, that’s an interesting conversation. So I often try and advise stroke survivors to be careful who they share information with. Not saying that you shouldn’t share information with your loved ones and your family members after a stroke. What I’m saying is like, even in situations where things are not that critical, where you’re not talking about spending 30 grand, I’m just talking about people who have the experience sometimes Andrew where they say, oh, I wanna try this meditation thing, you know, and.
somebody hasn’t meditated before, thinks it’s woo woo and says, don’t worry about that stuff. What do you wanna be? Like a hippie or something? There’s those types of people who hang out in our world who do intervene with things that we’re curious about and we wanna kind of shift away from perhaps old habits to new habits, especially around alcohol as well. I found that people would go, aren’t you gonna have one drink?
Like what’s the point of going out if we can’t have a drink? It’s like, dude, like I’m a completely different version of myself. I’ve had a stroke, I can’t drink. But understanding how to deal with people like that is a bit of an issue. So then you’ve spoken to about 50 people who have either gone or not gone. Like have some people gone and contacted you and said it worked and some people gone and contacted you and said it hasn’t worked.
Andrew (19:40)
Yes. Yep. And I’ve. The contact normally starts to go quiet once they actually go, whether it works or doesn’t work. And I usually just get a quick message saying, hey, I went and it worked and that’s great. And, you know, have a good life. You know, I don’t want to keep bugging them. But the people that it didn’t work for have been pretty gutted.
Bill Gasiamis (20:03)
Right.
Andrew (20:04)
Because I’ve, you know, even though I’ve tried not to make it something they hang all their hopes on, you know, they still do to a certain extent. And so they come back pretty, not bitter or angry at me, just at the situation, that it didn’t work. And they don’t know where to turn next.
Bill Gasiamis (20:22)
So they might’ve had all their hopes kind of set on this working, all their eggs in one basket, so to speak, didn’t work and now they feel like maybe they’ve lost hope or they haven’t got another alternative or option.
Andrew (20:35)
Yeah, yeah. And what I’ve learned in the last 18 months is that your stroke recovery doesn’t stop. There’s no end date. So when you’re told in hospital that after three months that’s what you’ve got, no, no. doesn’t, like your brain is constantly evolving and working and learning and repending itself.
If you want to work something and exercise something and rehab part of your body, eventually it’s going to improve. Even if it’s only by a little bit and it’s really slow, it’s going to improve.
Bill Gasiamis (21:09)
Yeah. So you’ve been 18 months down the track. One of the questions I got asked recently was, does the procedure need to be repeated every couple of years? Does it last? What have you found about how you have changed or experienced your body in the last 18 months? ⁓ Tell us first what you got back and how quickly and then what that led to, what you were able to achieve as a result of what you got back.
Andrew (21:34)
Yeah, okay. So, um, immediately the things that came back is is that my cognitive fatigue like just just lowered like straight away. Um, and I was when I had the shot, I was exhausted because they take it through a battery of tests. So I like was an hour and a half of tests. And so I was I was done. I was ready to go lie down. Um,
And that just lifted like straight away and it didn’t come back. I still get cognitive fatigue now, but I really have to be doing stuff that that really taxes my brain to do it. And or I have to be really tired. But before I had the injection, I would get I would be on the verge of fatigue all the time.
So it wouldn’t take much to push me over into it. So that was gone. I had a ⁓ really nasty cramp in my right calf that never went away. That went away. That literally just dialed down as I was sitting there after the shot. the emotional control also came back.
Bill Gasiamis (22:42)
Uh-huh.
Andrew (22:43)
which was good. Now, for me, I was, for the first shot, I was only in Florida for 24 hours. So we flew down from Memphis and I had the shot the next day and then we flew back that afternoon.
So when we flew down, because of my cognitive fatigue and sensory overload, I had eye mask, had noise-canceling headphones, had like, lorazepam in my pocket. Like, you know, I had all the, you know, all this stuff to, you know, save my senses. When we flew back, I didn’t need any of it, and that was 24 hours later. So I just stood in the airport like any other traveler. And that was…
Reflections on Stroke Etanercept Injection Treatment and Guilt
Bill Gasiamis (23:26)
Yeah.
Andrew (23:28)
That was the biggest sign that something profound had happened.
Bill Gasiamis (23:33)
Yeah.
Andrew (23:34)
The other thing was that my hand, my right hand went from feeling like it was sort of like moving in molasses really slow to loosening up and being more independent. And I found only a month ago that I was able to start to play scales on my clarinet again. So I can move my fingers independently. I could cover the holes with my clarinet here.
Bill Gasiamis (23:52)
Wow, man.
Andrew (23:57)
I can the holes in my fingers. It’s something that I haven’t been able to do since the stroke. To be able to play the thing, to be able to just play a scale, just says to me, at some point in the future, you’re gonna be able to play the thing again.
Bill Gasiamis (24:11)
So things are still improving. Your function is changing still. you, being able to play the clarinet, would you can attribute that to a tenor sept that long ago or just things getting better?
Andrew (24:26)
I think because it was if I come home and was able to play the clarinet then I would have a definite causality you know so I would rather say the definite yeah it was a tenor step that did it because before I went away I couldn’t even you know I couldn’t pick up things one more right hand so but because it’s been 18 months I think it’s because that that skill has come back
Bill Gasiamis (24:50)
Yeah, okay. What about work wise? Were you working or not working before the injection?
Andrew (24:57)
No, no. So I was able to go back to relief teaching. The classroom as a music teacher is ⁓ in a high school is too busy and there’s too many moving parts. So that’s not something I’ll be able to do again, at least not in the foreseeable future. And I don’t know if I want to now.
Bill Gasiamis (25:11)
Wow.
Andrew (25:20)
I have done some relief teaching. There are days where I’m in a school and I just feel that it’s a bit too much. And that could be because I had a bad night the night before or it was hot and I couldn’t sleep. And that wasn’t like that before the stroke. yeah, coming up with a new career now has been an interesting journey itself.
Bill Gasiamis (25:41)
Yeah. So there isn’t a need for another injection or anything like that. Nobody ever told you about another injection or what will happen in two years or anything like that.
Andrew (25:51)
No, If I can go there and get one, if I think it’s going to make even more improvement, because I had improvement from, you know, from the first. But yeah, there was no compelling sort of needs to go back. And I’m thinking that I probably would like maybe to have a second one, a second trip there and have.
having the shot but ⁓ I don’t know I’ll see how my improvement goes.
Bill Gasiamis (26:20)
Yeah, okay.
Andrew (26:22)
It’s so hard to One of the things I did do, I had an MRI about two months ago. And it was an MRI to check the status of my tumor and to see where it was. And obviously they also had a look at the stroke site. And comparing the stroke site now to when it was taken when I had the stroke.
there’s a day and night difference. Whereas I had a hole in my brain after the stroke, all I had was a little bit of glial, called glial scar tissue. So scar tissue of the brain cells, a little white line in my brain. ⁓
Bill Gasiamis (27:08)
as opposed to
a round circle of what appeared to be offline or dead brain cells. Yeah, which, you know, it sounds like to me, it’s like where the inflammation was, that area they usually call, they often call, sometimes called the penumbra, which is the area that’s able to be rehabilitated, which is around the site of the stroke, which is offline but not dead, which HBOT targets, the right kind of,
Andrew (27:15)
Yes. Yeah.
Bill Gasiamis (27:38)
hyperbaric oxygen therapy can target those as well and try and reduce them. So day and night, like a proper difference between one and the other.
Andrew (27:47)
Yeah, I was expecting to see when I saw the scan, know, where my brain tumor was and also the big hole and the hole was gone and there was just this like, this is a little, a little line there with scar tissue.
Bill Gasiamis (28:01)
Yeah, fabulous. How long has the brain tumor been there for?
Andrew (28:05)
20 years.
Bill Gasiamis (28:07)
Okay, and what does it do just sort of sit around and ⁓
Andrew (28:10)
Yeah, so ⁓ what happened is it just gradually grows bigger and bigger and bigger and then eventually if you don’t get it treated, it crushes your brain stem and that kills you. So I had mine irradiated 20 years ago and it’s got growing and it’s just started dying off and now it’s just like a…
dead mess in there and they check every four years to make sure it hasn’t done anything naughty and It hasn’t so they actually said of this last scan look it hasn’t changed in the last 12 years, so no more scans
Bill Gasiamis (28:41)
I hear you, okay. So it’s benign now.
Andrew (28:46)
Yeah.
Bill Gasiamis (28:47)
Yeah, okay. So you’ve through the rigor, mate. You’ve had an interesting neurological experience,
Andrew (28:54)
Yeah, yeah, yeah, yeah, feels like my brain’s out to get me.
Bill Gasiamis (29:00)
Yeah. Well, seems like the interventions have been really helpful in prolonging your life and then your life experience, like how you go about life. So as far as you’re concerned, like it’s all it’s all. You know, it’s been a good outcome, both both interventions.
Andrew (29:19)
Yes. Yeah. Yeah, I think so. I mean, my biggest challenge this year has actually not been the stroke or the brain tumor, but it’s been the medications for stroke to prevent another one. So my stroke was caused by an overactive adrenal or adrenal glands producing too much aldosterone.
Bill Gasiamis (29:31)
What man which man say you want?
Andrew (29:43)
And that was only diagnosed and found last year. So What was happening is that my body was? Was was keeping salt it was it was send my blood pressure sky-high and then crash it down
And for 10 years we thought that was anxiety. But what it was was that because my blood pressure wasn’t consistently high, I could go to the doctors and I could be normal. And then my other doctors didn’t have high blood pressure. It was not consistent. So I was just treated for anxiety and given a sort of a low dose blood pressure medication.
But actually what it was is both glands like over producing this hormone and that’s what gave me the stroke. So they’ve they’ve given me a hormone suppressant which helps, but they’ve been trying to.
to juggle multiple types of blood pressure medication to also bring my blood pressure down to a consistent normal. And so up until about three weeks ago, my blood pressure was still all over the place. And they had me on a really nasty cocktail at one point this year where I literally could not function. I couldn’t even get up. It suppressed my whole system so much.
that every time I stood my blood pressure would drop 50 points and I would almost pass out. So I was like a zombie. ⁓ It was just the combination of too many blood pressure medications at once. And finally, I’ve seen a different specialist and he changed my medication and I’ve just got one little pill at the minimum dose and it’s actually stabilized my blood pressure to normal.
Bill Gasiamis (30:51)
All right.
Righto, that’s good.
Andrew (31:18)
So like when I took it today, was 122 over 72. So it hasn’t been like that for I don’t even know how long.
Bill Gasiamis (31:25)
Yeah.
Fantastic, what kind of stroke did it cause?
Andrew (31:31)
are ischemic, so a clot.
Bill Gasiamis (31:34)
⁓ huh, okay. Wow, man. What an interesting journey you’ve been on. And this insight into Etanercept and how and why it might work for some people and not for others is probably helpful for it again, for a whole bunch of people to hear and kind of get a better understanding about scientifically speaking, Etanercept is not a viable solution for people who have had stroke and
there will be some people who will become all, what’s the word? Like they will, they’ll be all, this is snake oil stuff. And then there will be people who brag about it as being the best thing they’ve ever done, which seems to be kind of the camp that you’re in. I think, no, no, no, no. I mean, it’s one of the best things you’ve ever done with regards to your stroke recovery, right?
Andrew (32:18)
I don’t feel like complaining about it though.
Yeah, yeah, and I found that when I got the results for the for the pesto test I really had to do a lot of soul searching because because I couldn’t explain to myself Why it seemed to have worked for me and yet the study was saying hey, doesn’t really have any effect and and I had to to
Bill Gasiamis (32:36)
Wow.
Did you feel remorse or guilt about that? Wow, Wow.
Andrew (32:47)
Yes, very much. I felt like a fraud.
Because why? I couldn’t explain how I had such a huge night and day difference. And that couldn’t be placebo and it’d be still working 18 months later.
Bill Gasiamis (33:08)
Yeah, I think our hunch about the blood brain barrier is where the research needs to go. And I don’t know how you investigate the blood brain barrier. But if you can go there and investigate the blood brain barrier and if you can understand who has a compromised blood brain barrier and therefore.
Andrew (33:15)
Yeah.
Bill Gasiamis (33:31)
due to a compromised blood-barrier barrier, a candidate for a Etanercept I think that’s kind of where it needs to go. Because the biggest issue that people have with clinics who offer a Etanercept perispinally, like Dr. Tobinick’s, the biggest issue that people have that makes it hard for them to make a decision is will I be the right candidate? Will I be the one who will it work for? Or will I be the one that it doesn’t, you know? But I…
I find it very fascinating that you would respond that way, that you would feel guilty and remorseful that it worked for you and the pesto child says it shouldn’t have.
Andrew (34:10)
I feel guilty that it worked for me and didn’t work for someone else. You know, as well. Yeah, yeah, I mean, it’s like survivor’s guilt in a way. Yeah, that’s that and that’s how I felt. so the way I’ve thought of it is, well, OK, if it was placebo, it worked for me.
Bill Gasiamis (34:14)
Yeah.
just wishing for the best for everybody.
Yeah, I can relate to that. Yeah.
Andrew (34:37)
like it just it worked for me whatever it was it worked for me so and that’s that’s that’s all I can all I can say but I think this blood brain theory is is a good one and I would like to I would like to research and understand what what makes the brain leaky like what what events can make your brain
Bill Gasiamis (34:41)
Yeah. Yeah.
Andrew (35:00)
⁓ better suited to receiving Etanercept Like for me, probably the main cause could have been the fact that I had radiation on my brain years ago.
Bill Gasiamis (35:05)
Yeah.
Andrew (35:13)
Or it could be that I have a high blood pressure for 10 years. Or it could be I have my appendix out when I’m 17. But I would like to do some research into what it is, what factors make people more likely to have a leaky brain.
Bill Gasiamis (35:17)
Who knows?
Yeah, I think that’s a great thing. I want to research that too, because I have known about it. I’ve understood it. I appreciated that I might be somebody who has had a leaky brain because of the strokes that I experienced, the brain surgery and all the stuff that I went through. And I know that if you restore the blood brain barrier, you can really decrease the fatigue that happens to people after a stroke. And you can make it impenetrable again to toxins.
and heavy metals and all that kind of stuff, which is often the cause of real chronic neurological fatigue, even in people who haven’t had a stroke, who are, quote unquote, normal. So that’s fascinating. I really appreciate your continued willingness to have conversations about this topic and sharing your story more than once with me. And then also being
being an ear to the people who are curious about whether or not they should go down this path and then kind of just like, you know, being honest about your story, sharing what happened to you, what you experienced and even your own reservations because I don’t think you have anything to, and you probably know this cognitively anyway, right? You don’t have anything to be guilty about or feel bad about or.
anything like that. But I understand why emotionally you might go down that path because you’re a guy that cares deeply for other people. You appreciate how hard it is for people to go through stroke and you wish them the same solution or other solutions that you had so that we don’t have to suffer. I know exactly what’s behind it.
Andrew (37:08)
Yeah, yeah, that’s exactly right. Yeah.
Bill Gasiamis (37:12)
Yeah. Well,
hopefully this continues the conversations to give people more things to think about. Leave us a comment in the YouTube comments section. Reach out via email. Yeah, drop us a comment. Reach out to us and we’d be happy to continue the conversation, support you, guide you. Just being here and I don’t know, help you make a more informed decision. That’s all we can do. We’re not going to suggest.
Andrew (37:35)
Yeah, definitely.
Bill Gasiamis (37:41)
that you should or should not go and experience Perispinal Etanercept one way or another.
Bill Gasiamis (37:46)
Well, that was Andrew Stopps again. What a fascinating conversation. If today’s episode connected with you, I’d love to hear your thoughts in the YouTube comments, especially if you’ve looked into Etanercept Try it. I decided not to. Your experience can help someone else make a more informed decision. And if you found this helpful, please subscribe on YouTube and follow the podcast on Spotify or Apple podcasts. Reviews and comments genuinely help more.
stroke survivors find these conversations. If you want to go deeper, you can grab my book at recoveryafterstroke.com slash book. And if you’d like to support the podcast and help keep it going, you can join us on Patreon at patreon.com slash recovery after stroke. Thanks again for being here. You’re not alone in this recovery journey and I’ll see you in the next episode.
The post Stroke etanercept injection 18 months on: Andrew’s update after the PESTO trial appeared first on Recovery After Stroke.
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