. Hi, this is Brandy Shunts and welcome to Living Chronic. Today I'm just gonna talk a little bit about some updates and how far I've gotten with some of the research I've done on Drug Induced Lupus. Um, some of the research that I've done on how these types of reactions are communicated to doctors, patients, um, anyone involved really.

Really seemed odd to me that no one was able to identify my drug-induced lupus for 19 months. And of course, anybody who's heard my story knows that I suffered quite a bit, lots of pain, um, loss of mobility, just loss of my entire life. I really just lost two years of my life to drug induced lupus, and it's still.

Causes a lot of differing emotions within me. I'm sure that's quite common. As a matter of fact, yesterday I had the privilege of meeting a woman who works at the Crohn's and Colitis Foundation, and she had a very similar reaction to me, my own. And, uh, Hearst was on Remicade, though I was taking Humira, and we definitely had a bonding experience.

I can't tell you what kind of feeling you get when you've gone through something like this that's so traumatic and you just feel so alone. And sometimes, to be honest, I felt crazy like. . Well, if the doctors can't figure out what this is, is this all in my head? Somehow I even had one doctor suggest that it probably was, which is insane if I could make my body do exactly what my mind wants it to.

I'd be competing in Iron Man Chattanooga this year. But obviously it was not in my mind, and it's just so refreshing to meet other people and hear them talk about their experience and to know and understand that this is trauma. , there's nothing wrong with you, and it does take a long time to recover, and that's where I am.

I'm still recovering and I deal with a lot of anger. I deal with a lot of depression. It comes and goes. It's gotten better. Of course everybody should know by now. I, again, something else I like to talk about because I think it makes it easier to really share and for other people to feel. That they're okay for feeling a certain way or taking a certain, um, treatment path that you might not have.

So I'm on Wellbutrin. The Wellbutrin has helped though I, of course, I'm nervous. I'm constantly checking warning labels on every drug imaginable.  and Wellbutrin does have drug-induced lupus as a side effect. I'm trying to do as much research as I can to find all of the drugs with this because it's just frightening to me after going through this experience, but still on it.

It's helpful. I have had some really down times and I'm doing my best to focus on doing what's right. And what's positive to make things better, because I know that just being angry is only going to make my depression worse, and it's just not gonna get me out of this situation. My ultimate goal is to ensure that what happens to me never, ever happens to another person.

So with that in mind, I have submitted some FOIA requests so I can better understand the drug that I was. As well as the reaction. I've requested data from the FDA around everything submitted for the approval of Humira. I have also requested information on policies, procedures surrounding the Adverse Reaction database.

If you're not familiar with the Adverse Reaction database, it is on the FDA's website. I also have a link to it on my own website, living chronic nine one one.com. So you can go, you can look at that web that. That website, the database, and you could search the medicine you're on, you can search by reaction.

Um, it's really not easily read. And I have to say it's been a very difficult  three years, not just because of the pain, the suffering, the loss of my life, all of those things. , but also because I had to do so much research on my own, doctors didn't have time for me. This all happened during the pandemic.

They had to move on to the next patient. Maybe they just didn't care. I, I don't know, but a lot of my research was done on my own, so I'm reading. N IH articles, other medical journal articles. If you've ever wondered how long it takes somebody who has zero science background to read one of these articles, the answer is forever.

It was exhausting. It's still exhausting. I'm still trying to read as much as I can. I'm I, I've still got files in my computer of just articles that I barely understand, but I'm trying to read through. , there's a lot of Googling, there's a lot of research. Everything leads me down a whole nother path because I don't understand it.

I, I, I always joke, I think the only science class I took in college was exercise science, but the policies, the procedures around the adverse reaction database, this gives me a feeling. Hope, I feel a little bit of a sense of relief knowing that I'm now gonna be looking at something I know how to do. I can reorganize a business and agency to ensure that it works correctly, and right now I can tell you the adverse reaction database does not work correctly.

If it did in theory, I would never have gone 19 months. Without a diagnosis, and I've often said it can only be one of two things. Either my doctor was woefully incompetent or uncaring or just, just really cr, you know, just malpractice at at the worst or. The F D A and the drug companies are not doing enough to ensure that all prescribing physicians understand the side effects that may come out of that drug that they are prescribing.

My reaction is not uncommon. That's something I've learned for certain. I run into people it feels like almost daily now, who say, yes, I had the same thing happen to me or my brother had that happen to me. To him, or maybe a friend, a mother, a father. I even had somebody that was doing a test for me and the hospital said, oh yes, my mother, a doctor, had something similar happened and it took a year for them to diagnose and she was a doctor.

So it's, it's not uncommon. So feeling really good about friendly, getting to a piece of something that I know how to do, and hopefully when I do get my foyer requests in, I can take a real deep dive. How that adverse reaction database is being used, how it is being used to communicate various reactions, how it's being used to research, certain reactions, if the current, uh, regulations, the current rules around how reactions are even.

Recorded is done correctly. So the adverse Reaction database for the overwhelming majority of us is completely voluntary. You don't have to report your reaction to the adverse reaction database. Your doctor does not have to report your reaction to the Adverse Reaction database. The only entity required is the pharmaceutical company, so obviously that's a problem because they're not the only one.

Dealing with these types of reactions to my mind, the doctor should be the very first one to report these. From there, I'm interested in finding out what's the process, what, what are we doing with these things once you receive them. I re, I did, uh, report my reaction. I never heard anything back. Never. I got an automated email.

Your submission has been received and that was. . So obviously there's a lot that can be done here to make this database more efficient and to make it work so that doctors better understand what they are prescribing and what a reaction may or may not look like. It'll also help patients because I had no idea what drug induced lupus look like until I had it, and then once I started researching, Better understood the kinds of things that can happen to you when you're having these reactions.

And just as a reminder, if you are on, especially a TNF blocker like Humira, uh, but really any drug, it's amazing how many of these I've found that have drug-induced lupus as a side effect. Know the symptoms to look for stiff muscle. . Now for me, I had been training for Ironman, Chattanooga, and then I most certainly was not, and I couldn't understand why I was having so much difficulty running.

I've heard from somebody else that she liked to, you know, exercise three to four times a week. She would maybe go to a class and if she went in and did. Difficult, hard workouts. She wouldn't be able to do anything for 3, 4, 5 days, which was very similar to what I experienced as well. Um, just, it just looked a little bit different because I explained it in terms of how I was dealing with my training schedule around the Ironman, um, rashes.

I've heard everybody say the same thing. We had rashes. I had. Stereotypical butterfly rash on my cheeks, but I also had sun rash everywhere and every time I went outside I would have just this rash across my chest and on my neck. Um, itched painful. I lost my ability to walk. I have heard so many people say the same thing.

I've heard many of us talk about the wall. Your hands are just in a little ball. You don't know what to do. It's very painful. Your joints are inflamed. You have all of these various issues. Um, So just be sure to, to keep in mind what are the signs and symptoms of drug-induced lupus. If you are starting to feel any kind of differing emotions, mental distress, you know, first and foremost go out there and get help, but also try to figure out is it a part of that medication.

That was another one of the symptoms I've had, and I've heard it from quite a few other people. So there's still a long road, but every day it's getting a little bit better. And I'm really looking forward to being in, to dive, being able to dive into something that I know, uh, of course, make no mistake, everything surrounding the approval of Humira will take me, uh, unknown amounts of time because, Science is not my background , so it's difficult, but I'm really looking forward to maybe get to take a good look at how this adverse reaction database is used and how it can be better used to help patients.

Um, cause again, nobody should ever have to go through what I did or what so many other people have gone through that I've spoken to since I started this podcast. If you would like to register for the database of people who have suffered from drug-induced lupus, I have that on my website. Again, living chronic nine one one.com.

Any help is, is just so appreciated because I just want to see us get to a place where we could start seeing new policies, new laws, uh, new procedures. , we gotta do something. There's too many people who have had these types of reactions and have not been able to get quick resolution. It's honestly absurd that anyone should have to lose two years of their life.

And I think that the pharmaceutical companies, doctors and the F D A should be held to more count. Cause we're human beings, not just a number. So my next podcast, I'm looking forward to, please don't miss it. Dr. Bruce care of Potomac Psychiatry is going to be speaking with me. Um, Julie went the nutritionist.

She has a specialization and leaky gut syndrome. Lots of great information. These, this guy is really to specialize in working with people just like you and me. And I know we're gonna learn a lot from them. So until next week, thank you for listening. This is Living Chronic.