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Steroids Stole My Summer – Importance of Drug Monitoring

Steroids Stole My Summer – Importance of Drug Monitoring

Prednisone has been prescribed by medical professionals to ease suffering and save the lives of their patients. This drug is indeed a miracle since it’s saving you. It’s helping you fight your disease but it doesn’t last…

There is also a downside when you’re on this drug. If you’re unaware of its side effects, you might be surprised how this drug will make you feel not yourself and how it will affect your normal life.

Now the question is, is prednisone worth it? Today, let me share this interview with D.P John the author who shares the importance of drug monitoring based on his friend’s experience with steroid psychosis taking steroids as treatment.

Cheap or $26k?

Prednisone only costs $4-10 or sometimes more than that…

It’s a “cheap generic.”

It’s so easy to prescribe because “it doesn’t cost much.”

It’s on Walmart’s “$4 List” of inexpensive medications that they can sell for only $4 if you don’t use insurance.

Yet, the drug cost is often the least expensive part of taking prednisone.

As you know, the side effects “cost” much more than $4…

They cost pain, misery, fatigue, relationships, bones, joints, vision, appearance, and much, much more.

Someone actually figured out exactly how much their side effects cost!

And his friend wrote a book about it!

When I found out that there was an actual book written about prednisone side effects focusing on the preventable costs, I was hooked.

I immediately reached out to the publisher, and they got me in touch with the AUTHOR!

Lucky me, I got to interview the author of the book, “Steroids Stole My Summer.” Get access to the book here: Steroids Stole My Summer Audible

Steroids Stole My Summer Interview with author D.P. John

Check out this interview to find out not only the unbelievable (to those not on steroids like us) story of his side effects, but also, what he wants all of us to know so we don’t have to lose our summer, or $26,000.

Steroids Stole My Summer Video Transcription

Steroids as Treatment

D.P John: Hi, Dr. Megan! Thank you so much for having me on your show appreciate it.

Dr. Megan: So excited to have you here! So D.P, what is steroid stole my summer all about?

D.P John: So, Megan, this is a true-life story about a man in his 40s that was overprescribed for a simple inner ear infection. He was overprescribed with steroids which kept him sleepless for over three weeks until a manic event that got him committed to a behavioral center. That’s where he got stuck for 17 days. His diagnosis from the doctors there was corticosteroid-induced mania. In effect, the steroids caused a temporary period of extremely high energy or a mood that might look similar to a bipolar disorder.

Insomnia while on Prednisone

Dr. Megan: Wow! That sounds terrible and what if people hadn’t known he was on that medication? Just thinking would they have even diagnosed him with that kind of a diagnosis or not? Oh my gosh! So I want to know what type of steroids were these?

D.P John: Yeah, that’s a great question so this is a little timeline that I put together about Ryan’s adventure. Here with steroids really showing the prescribed medicines from you know early July until late July. What you can see here is really the number of medicines. That’s kind of shocking and a little bit scary but as far as the steroids. First, he has prescribed methylprednisolone. Then after that, he was prescribed prednisone and then dexamethasone. So in addition to that as you can see there were also a number of different types of steroids including some topical and nasal steroids that were prescribed.

Dr. Megan: Oh my goodness. Like why would somebody need so many steroids and all these different ones you know? It’s like he had. Why wasn’t the first one good enough? why did they have to switch it to another one?

Oh my it happens. He had not just the oral steroids but he had the topical ones in his nose which is surprising for just a simple ear problem. I’m really shocked to see so much steroid usage in this situation because you would think it was it would just be like a one-week thing and somehow he’s been given prednisone and dexamethasone and methylamines alone. These topicals and they’re all steroids but steroid is like a really big umbrella term and steroids could also include anabolic steroids like bodybuilders used to build up muscles.

And you know get that gem body but that is not at all. What this does not even close? In fact these kinds of steroids actually make your muscles go smaller so these are called corticosteroids. Chronozone, dexamethasone and they help us deal with stress and so this kind of stress he was dealing with sounds like he almost got way more stress because of it right

Watch this full interview with D.P John the author of “Steroids Stole my Summer
https://www.youtube.com/watch?v=8WbndAhKth0

D.P John: Yeah, absolutely. What was prescribed here again for an inner ear infection. At one point after the first steroid was prescribed. He actually felt about 90% better but then once that prescription ended really it tailed off. And unfortunately really what was at the root of the problem with this ear infection was not completely cleared up? So that’s where they kind of went back for additional prednisone and in addition after that, it didn’t resolve the problem.

Then there were some additional anti-inflammatory cocktails and other steroids and valium prescribed to actually deal with some of the stress and the anxiety that was happening. You’ll notice that that was actually not filled. Because Ryan at that point got concerned with the over-prescription that the doctors were doing. But then he headed back to his general practitioner. Who then yet again even knowing the situation prescribed him dexamethasone and chose a different steroid. You know some other like the transdermal scopolamine a patch to actually help with some of the original symptoms that he had which was simply around feeling dizzy and uneasy on his feet.

So the reason why this story is so relevant today is really due to the numerous uses of prednisone that we see out in our environment. You talk about this every week Megan and then now we have the added use of dexamethasone for the sickest covid patients for COVID19. Especially with these COVID19 variants, we could be seeing an increase in the patients who have certain mood changes and manic events like Ryan. In my book or even psychosis, the effect could be yet another massive influx of patients needing mental care yet again overwhelming. Another health care system as it has done time after time over the last year and a half so really my feeling is that we need to get ahead of this we need to start thinking about how we can address the side effects now

Dr. Megan: That is for sure because there are so many terrible side effects, I mean and what we’re seeing here with this what you’re showing on on this timeline is we’re having a prescription for a prescription right like there was one initial prescription and then all of these other prescriptions are to treat the side effect.

D.P John: So true oh

Dr. Megan: And that’s just so disheartening when there’s there should be a better way right?t And so you mentioned some things that could be done to address this problem.

Importance of Drug Monitoring

D.P John: Yes, absolutely! So really the first thing is around drug monitoring, right? It’s really not present in most medical practices today and it’s really key to understanding more about the side effects of these corticosteroids and to reducing the disastrous effects to a patient and their families as Ryan had suffered you know whether this is a simple mood change, mania or even psychosis, right?

drug-monitoring

Drug monitoring is really just one aspect of the over you know post discharge care that is a necessity to both reduce the recovery time and reduced health care costs. However, it’s often only self-service today. You’ll you get kicked to the curb sometimes and say “Hey, call us if you’re having an issue”. Well, that’s not drug monitoring.

It’s definitely not professional drug monitoring and these post-discharge care includes medications, wound care, physical therapy, mental counseling and therapy.

Even post-discharge visit coordination. Think about the mental counseling that people have from all the anxiety and different mood changes. You need some way to treat that! So this really is an area that I feel that the healthcare community should be rallying around to create better methodology and processes and tools. Not only would this help their business models but it also is important that we improve the lives of the public by helping them that get back to normal faster and consuming less of their hard-earned money.

This slide here shows the recovery timelines and costs that were associated with Ryan. As you put your eyes on this you’re going to be sad because if you look on the left-hand side. That is the actual path and treatment that was taken 47 days. 26 thousand dollars just in health care costs alone not to mention the loss of Ryan’s wages that he needs.

steroids recovery timeline

You know that he needed for his family. From July 1st through August 16th so you know roughly you know six-seven weeks. You know led him from the steroid again all prescribed steroid use, multiple emergency room visits, doctor’s visits, insomnia building and that’s really what led to a manic episode.

You know and not only just cost of money but also the cost of humility right in in the town where Ryan lives a visit to the crisis center that was unfortunate that could have been you know stopped maybe just checked into a hospital and be able to get give him better sleep aids and things and then certainly ending up in a behavior center for 17 days at a cost really to health care and to Ryan you know for 18 000 dollars.

And I’m not talking just “hey check-in and check out when you want to!”. I’m talking he had to stay there until he was released by his doctor. So better cost of the scenario is you know certainly still using the steroids because they were important to his recovery but actually, you know

having drug monitoring to detect those side effects and prevent this type of manic episode

you know getting a prescription simply from you know information provided from the drug monitoring. To get a more effective sleep aid right and at home correcting his sleep cycle. No visit to the crisis center or behave center just staying home with his family and correcting this certainly a lot less time and maybe only 550 dollars right.

Dr. Megan: That is amazing the differential between those two and I was stunned in the book to hear how he advocated for himself and even with his level of savvy with saying “No, I can’t sleep when there’s a light on in my room”. How that like and he helped work with the nurses to find ways to get the light so that it wasn’t shining in his eyes all night long to make it quieter. Like all of these simple changes how much effort it took him and that he actually even bothered to try.

Most people, they don’t have that much savvy in knowing how to change an organization. How to make these huge yet simple changes and so it sounds like this idea that you have it come it comes with a lot of processes a lot of technology. A lot of people who need to be trained and how can we do like what can we do now before all of that process is in place what can we do in the meantime

D.P John: Megan, I so much appreciate you bringing up that reference because you know. Even though I wrote it and Ryan lived it every time. I think about the opportunities that Ryan had to actually help to try to improve the system while he was stuck in there for 17 days. You know not only helping himself but helping other people. Just to get that ever so necessary sleep that is so critical to you know rebuilding the mind rebuilding the body um so so important and you’re right there are you know long-term things that we can do with processes and methodology. People and money.

But there are a lot more simple things that we can do. As an example doctors’ office’s healthcare institutions could simply start off by following up with their patients via phone or text or a simple internet survey! That would at least alert the doctor’s office if there was a concerning side effect that needed to be follow-up on with patients that are more at risk. They’re going to have to use you know their intelligence to determine “Hey, which are the risky patients which are the risky side effects?”. But they know that so if they’d simply pick up the phone or put something simple in place and then there’s more momentum around. Once companies build these more post-discharge tracking systems they could put them in and this would really further automate it and scale things to cover more institutions and different types of post-charge, and post-discharge care not only relating from medications and drugs.

Dr. Megan: Yeah, I think this is awesome. It just hurt me when I was reading your beautiful book to hear how the health care system was failing him. To hear how in this place where he’s supposed to be recovering from a mental illness that they’re shining a flashlight in his eyeball every 30 minutes through the night like just knowing the pharmacology of prednisone the mechanism of how we sleep. How both those things are completely interfered with by light and how just we absolutely need melatonin to be released and how that’s completely impossible when you have a flashlight on your eyeball every 30 minutes no wonder he couldn’t recover absolutely I just floored like it just so sad there’s just so much room for improvement oh my goodness this book if you are taking prednisone. This book is just like oh I understand you and you can finally have somebody who’s like that is exactly how I felt too so based on all of this that you have shared I want to know what is your best advice for prednisone warriors

What You Need to Do

Drug Monitoring

D.P John: Oh great question! Keeping things simple. I’ll give you 3 things that I would suggest.

  •  Everyone write down all your medications right keep a medication notebook. Take it to your doctor’s visits regularly because they’re not tracking your medications. As you go from different doctors’ offices that have different back-end technology systems. They’re not sharing that information so you’re going to have to share it with them directly and keep asking “hey, did you see I’m taking this? Are you aware of this?”.
  • Use the rule of three which I write about my book. You and two family members or friends tracking your behavior and well-being from the medication right. You’ll have your opinion of how it’s going from going for you and if you’re in this state that Ryan. Was it might be a little bit off? Then you’ll have the opinions of  your friends or family members. These are important to share together so that you can understand what is happening or what’s not happening and then seek additional help from your medical providers.
  • Most important to this, I would say uprising of drug monitoring and post-discharge care which keeps asking your doctors if they offer it right. “Hey, do you offer drug monitoring? Do you offer post-discharge monitoring? Is it free? Is there a pay a fee for it?” You can I get involved in your program because if you keep asking for these services then demand will drive the healthcare industry to change! There are some institutions that are already doing this already however they’re few and far between so we have to keep asking and demanding these types of services.

Dr. Megan: Oh I couldn’t agree more. It’s amazing how some people despite when I would dispense these medications to patients. How someone were like when I offered” hey do you have any questions” like no and it’s like this is your chance guys. This is your chance to say. I don’t actually have a question but what should I know about this medication? You know just giving every health care provider in your team whether it’s your doctor your pharmacist nurse whoever the chance to really give you what advice they do have because if you’re like “I don’t have my questions”.

Then you just really miss a huge chance because what your doctor or pharmacist or whoever should be telling you about your steroid prescription is probably not what you think. And you might be surprised it’s funny my pediatrician always apologizes when he’s talking to me about my children’s immunizations and he’s like “oh you probably already know this because you know you’re an immunized”. And it’s true!  I did already know that at one point but I don’t live it and breathe it every day and so I always say I want to hear it tell me again because I want to be sure that it’s top of mind for me and that when I’m in his office that I’m using his expertise to the highest level that I am demanding his full attention for me and my baby. So when you are in a health care setting like Ryan that you say you know I can’t sleep

whatever weird thing you’re feeling that you communicate that with your doctor because they can’t know unless you tell them! They can’t know that you need help. They can’t help you without your part in in the healthcare triangle.

You need to demand that drug monitoring by being in such close communication with your doctor. People come to me all the time saying you know “I have this terrible anxiety after my doctor gave me dexamethasone or prednisone or the medrol dose pack, the methylprednisolone.” And they’re they just feel totally disabled and they say “I can’t sleep and I’m fidgety and jittery” and I said have you told your doctor and they’re like “NO.”

You need to be your own best advocate because they can’t help you with this anxiety with this jitteriness with the lack of sleep unless you tell them. If you saw that cool chart he made it’s got like what should have happened and what should have happened was appropriate care from the first doctor and the only way that first doctor can give appropriate care is with appropriate information from you sharing your experience they need to know!

I couldn’t agree more with you your suggestions here that you demand this post-discharge drug monitoring and then I’ve gotta ask so D.P we’ve heard just a snippet of this story.  Guys I listened to this book and it is fascinating like I couldn’t believe it so I just wanna know where can we find you D.P? Tell us how to get a hold of this book so that we can hear his story. How to find these solutions that you propose.

D.P John: Absolutely. Thanks Megan! You brought up such great points about advocacy because I as a writer and you know steroids as the subject matter expert. We both believe in science right? We both believe in medicine and health care. Everything about that but it’s important to be your own advocate because people are people. We all make mistakes and you really need to to take your body and your  own health so seriously. You have to take charge of it and you know regarding the book. I would say I hope that whoever reads this or listens to this book really spends some time to understand what’s happening to laugh at the funny things.  I specifically wrote this right with the direction of Ryan to be funny because there were some funny things that happened right and there was some interesting thing that happened as you mentioned about the quest for sleep and the quest for getting dim areas and darkness so that people can sleep and recover.

There are some things that hopefully you know the readers will you know take away from this and apply to their own lives and again get some amusement out of it as I do every time. I think about it so you can find the book on amazon, kindle, iTunes, Barnes and noble. It’s on a lot of the smaller vendors as well and you can also listen to the audio version on audible and really enjoyed being here today. Appreciate everything you’re doing Dr. Megan to you know put light on these subjects and all you’re doing to help your constituency base. so thank you so much for taking the time with me!

Dr. Megan: Oh it has been our privilege to have you here D.P! It’s so nice that somebody you took the time to actually write this story down because

the saddest part about these steroids is they’re old drugs and nobody is paying attention. Nobody.

There’s no big drug manufacturer out there who has this big wide wallet willing to spend lots of time to help people truly understand what it feels like. It’s such a privilege that we have this book now that you can read. You can find out what someone else’s experience was so you can realize that you’re not the only one. And not only that, so you can also find out that it’s the drug. It’s not you that his story truly illustrates that prednisone can make you feel completely insane, completely not yourself.

It can make you do things that you are not in control of. And so this book really lends legitimacy to all of those who are suffering so much thinking, “I think I’ve just gone insane.” And that it’s not it.  You aren’t insane it’s just this drug. There is help available and so many of these principles and ideas are found in this book. So, I encourage you to buy it either on like the amazon or the audible. I personally love audible. I love audio books. I’m a mom. I can’t just sit there and read a hard copy of a book so the only way I get it done is by listening while I’m doing the dishes or laundry or whatever so I would highly encourage you to get this book and start acting on what he suggests at the end of the book!

Kindle E-Book:

Steroids Stole My Summer E-book

Audible Audiobook:

Steroids Stole My Summer Audible

Dr. Megan Milne, PharmD, BCACP

Dr. Megan Milne, PharmD, BCACP, is an award-winning clinical pharmacist board certified in the types of conditions people take prednisone for. Dr. Megan had to take prednisone herself for an autoimmune condition so understands what it feels like to suffer prednisone side effects and made it her mission to counteract them as the Prednisone Pharmacist.

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