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Prednisone for Lupus – The Super Loopie Woman Interview

Prednisone for Lupus – The Super Loopie Woman Interview

Prednisone has lots of unique uses! One of those includes Lupus. It’s also known as SLE or Systemic Lupus Erythematosus.

Lupus is a tough autoimmune condition and lots of “Loopies” are on prednisone. (Lupus comes from the Latin word for wolf! 800 years ago this condition was named because sometimes it causes facial lesions that resemble a wolf’s bite.)

I didn’t know much about lupus, so I interviewed an expert! Meet the Super Loopie Woman! Her YouTube channel is all about coping with the disease and the side effects.

Lots of her tips (follow her on her social accounts: Facebook, Instagram) are applicable to those of us who don’t have lupus, but are dealing with long-term side effects.

We interviewed each other and both of our videos are on YouTube.

Check out what it’s like to be on prednisone long term, starting as a child.

Find out what Lupus is.

Read this interview of her, then watch her interview of me to get the full picture.

After you read, if you don’t have lupus, let me know if there is someone I could interview about your condition so we can understand it better, too!

What is Lupus?

According to the Mayo Clinic,

Lupus is a type of autoimmune disease where your body’s immune system attacks your own tissues and organs. This disease is sometimes hard to determine due to its symptoms that mimic other ailment’s symptoms. Symptoms may include inflammation, swelling, and damage to the joints, skin, kidneys, blood, heart, and lungs.

Is Prednisone Prescribed for Lupus?

Yes, and you’ll get to know more about it by reading the whole blog because I did a 1-on-1 interview with a Prednisone Warrior who is fighting lupus!

We are so excited today that we get to hear from a fellow YouTuber who takes prednisone for Lupus. We have Katlyn the “Super Loopie Woman.” She is going to share her prednisone journey with us since she’s probably been on prednisone way more than I ever have! You may check out her YouTube channel or follow her on her social accounts (Facebook, Instagram)

So this is going to be a wonderful experience finding out how it feels to start prednisone when you’re younger and then find out what she does to cope because she’s got a long history of it. We will get to know more about Lupus and Prednisone.

 

Katlyn’s Prednisone + Lupus Story

“I have been on prednisone for a while varying doses. So just to tell you a little bit about how I started on prednisone, whenever I was 12, I was diagnosed with systemic lupus and they had to put me on prednisone right away, just because of the severity of my symptoms and how quickly they were onset.

And it did help, which is great! However, being that I was 12, I didn’t stay on it initially very long. It did end up getting off of it just because when you’re a teenager, you’re a preteen, you’re vain.

You don’t want that weight gain, acne, that profuse of sweating. Nobody likes those things and it’s sad, but whenever you’re in the middle of school, those things are more important to you than your health.

So I didn’t stay on it very long, maybe like a year or two, which I guess is kind of long for prednisone, but so I refuse to be on it all throughout high school and my young adult years and till I had no choice, I had to get back on it.

“It was actually so bad that I was begging them to put me on it (prednisone)!”

Prednisone + Lupus

So, what happened is I’ve always struggled with, you know, pain and inflammation. That just comes with lupus. There’s this one day where I couldn’t walk.

So yeah, so I took a girls trip with some of my friends and the trip was awesome. Loved it. Every second of it, my husband set it up for me and everything was fine until the flight back to I’m here in Pittsburgh.

And I noticed more and more intense pain in my hips and my legs while on the plane. And when we got off of the plane, I couldn’t walk. I, it was a struggle. It was very difficult for me trying to kind of hobble my way through the airport, just to get my bags and get home.

And I’m better about it now but that kind of thing was embarrassing for me just because my friends weren’t really helping. They weren’t like encouraging and it’s, it’s scary. It’s scary. I would have had to have been maybe 23 or 24 years old and just to suddenly not be able to walk, it’s scary. So I had to take a few days off of work, just couldn’t move.

And then I called my doctor and begged and begged and begged for prednisone! It helped with the inflammation and it helped with the pain significantly. But then when you’re not on it for so long, you realize, oh yeah, that’s why that’s how I didn’t want to take it because of all the side effects and they are so many!

 

Her Prednisone Dose

Katlyn: “Long story short, I’ve been taking it pretty much ever since the highest dose I’ve probably been on was maybe like 30 to 40 milligrams a day. The lowest I’ve been is 2.5 milligrams. I can’t seem to go below that. So, and then currently right now I am on just five milligrams a day, which is a huge accomplishment for me. I’m proud of it—It’s not so bad; it’s just enough to help. So I can function as a normal human being.

It was so bad that I was begging them for the steroid injections and the oral prednisone, just because it’s, it’s insane. How well my body reacts to prednisone. It’s, it’s crazy. Cause like if I dropped below 2.5 even if I dropped below five, really, I noticed a huge difference and it’s like this crazy drug and it gives me energy and moon face and less pain. So I’ll take, I’ll take the energy and the slightly less pain for sure.”

But is a huge accomplishment of five milligrams for all prednisone warriors. Like to me, if five milligrams and I can tolerate this.

That’s quite a story about the prednisone! Imagine how bad it must have been for Katlyn.

What is Lupus?

Lupus is a type of autoimmune disease where your body’s immune system attacks your own tissues and organs. This disease is sometimes hard to determine due to its symptoms that mimics other aliment’s symptoms. Symptoms may include inflammation, swelling, and damage to the joints, skin, kidneys, blood, heart, and lungs.

Katlyn:

It’s an autoimmune disease. So basically my immune system attacks itself. It attacks healthy tissues, healthy organs. So what I like to tell people is to think of how your body would attack a flu. So if you work to get a flu, you know, naturally, you get a fever, you have aches, pains, chills.

Sometimes you can get rashes. There’s a ton of different things to lupus. It’s a very complex disease because it can affect any organ at any time. For instance, one of the main symptoms is the usual telltale sign is you get a rash right here and they call it the butterfly rash.

butterfly rash caused by Lupus

And that’s usually, and that’s a lot of times people’s first like,

“Hey, you have lupus!” that kind of thing, but it causes hair loss, muscle aches, joint pain, lots of inflammation, fevers, you name it. It’s probably hereditary.

Lupus is Hereditary

Katlyn: So for my family, we do have people in my family who have lupus and they say it can be genetic or that is genetic so that was kind of like our first red flag…

Being a 12-year-old, it was time to go through some changes to be a woman and lupus is very hormonal. So hormones just really amplify all of the symptoms. You know, it was that point in my life and that was a second red flag. And also at the time my mom and stepfather had been going through a divorce and we were moving.

So I had lots of stress and that right there, the stress and hormones that really, really amplifies it. So anytime I’m having like a difficult period with depression or anxiety or stress, anywhere in my life, it really amplifies my Lupus symptoms.

What Worsens Lupus:

  • Stress
  • Hormonal changes

Diagnosing Lupus

With the genetics and the hormones and the stress, it was pretty easy for them to tell, unfortunately, which is interesting because I have to say that for most people to get their diagnosis with lupus it can take years and years and years. So they were able to pinpoint that from me pretty quickly. No, that’s amazing that I found it so quickly

“because a lot of those symptoms are really, non-specific like, it’s really hard to be like, oh, that’s lupus”

It’s like, yeah. Like why are you having joint pains? Why are you having a fever? It’s like diving deeper into each of those symptoms might take years. I can definitely see that.

It just seemed that with everything going on in my life, at that point, it was enough to super amplify my symptoms. So I had been to the emergency room for migraines, just pain, allergic reactions. They thought that I was having it because I had lesions all over my body, but in the end, we found out that that was all lupus-related.

The typical age to Diagnose Lupus

Dr. Megan: Katlyn was diagnosed at a young age. And in your teenage years! So you were unique with being diagnosed so young. What would you say is the typical age that people get diagnosed?

Katlyn: I would definitely say it’s, it’s more common in women by far and I would have to say women in their childbearing years. So I wouldn’t see most people that I’ve met that I know personally have been diagnosed somewhere between the ages of let’s say 18 and 30. It’s like, you get to enjoy your kiddo years, and then it’s, it’s no more fun and games.

Dr. Megan: And so you’re not the only person with lupus who’s had to take prednisone. What would you say in your experience and having talked to other people with lupus is, or the typical doses that they might give somebody like if somebody brand newly diagnosis with this and they’re like, you’re going to get prednisone, what could they expect is like?

Typical Prednisone Doses for Lupus

Katlyn: Sure. So what I’ve noticed in my experience and with my friends who have lupus, I find that they typically really like to start you off pretty high and then kind of work you down. So I wouldn’t say that there’s a typical dose. Everybody’s a little bit different, but I, from my personal experience, they usually like to start you off between 20 and 40 milligrams a day case-by-case depending of course, and the maintenance dose, I would say like once they kind of get you over that hump of your symptoms, the maintenance dose is typically around five to 10 milligrams, maybe just depending on what’s going on with that particular person.

Dr. Megan: That makes sense. Yeah. I that’s what I’ve observed in talking to lots of people who are on prednisone and my taking it for lupus. So would you say most people with lupus take prednisone or would you say only some people like you’re probably in support groups and stuff and know what’s going on?

Katlyn: Yes. So I would say that most of my circle of lupus warriors is on prednisone. And then I would say nine out of 10 have been on it at some point, maybe not actively taking it, but I would say nine out of 10 of my fellow lupus warriors have taken it at some point maybe not actively taking it.

Other Drugs for Lupus

During my interview with Katlyn, I asked her what are the other medications prescribed by doctors to people who are suffering from Lupus. Listed below are the drugs that are mentioned.

  • Meloxicam
  • Celebrex
  • Plaquenil
  • Benlysta
  • Humira

Dr. Megan: So if they’re not taking prednisone, what other medicines might they be using? Like what, what else do you use and what else do other lupus warriors use?

Katlyn: So with lupus, there’s a lot of different drugs that they use to treat. Mostly just treat the symptom. So other than prednisone, NSAIDs, or non-steroidal anti-inflammatory drugs, those are pretty popular. Sometimes they’ll just start you off with like ibuprofen or Motrin. And then once they see how things are progressing, they’ll like to do drugs similar to like Meloxicam; they like Celebrex, diclofenac, things like that. I’ll probably have to take it for the rest of my life, just to help manage the pain and inflammation with lupus as well. One of the big drugs that are pretty common is called Plaquenil.

So that’s a very important one, to be honest with you. I don’t really understand how it works, but I’ve been on it since I was 12. And I know everybody in my group kind of got really scared because with COVID they were originally saying like, Plaquenil, it’s, it’s a miracle, it’s going to help. But I’ve noticed that there’s a lot of just in general shortages with it.

So like that boom, like what maybe March or April of last year, it really scared some of us, we were worried. We weren’t going to get our medicine. Other than that, I would say those are like the main medications they could put you on lots of other things too.

I am on like 15 different medicines, but I would say those are the most typical drugs to treat lupus aside from Benlysta, which is the first drug to treat lupus. And I think in like 50 years that they’ve made. So that was a pretty big breakthrough.

Dr. Megan: Are you on Benlysta?

Katlyn: I am not currently on Benlysta. I look forward to trying it in the future, but right now I’m on something kind of similar called Humira and that’s a biologic. So, a lot of patients with lupus are on biologics of some kind. Yeah. I’ll there are so many of those options too.

Dr. Megan: Yes, for sure. I remember that hydroxychloroquine time. I was in the news about it because it was so crazy. Like they, they needed somebody to talk about, like who actually uses this drug and then real shortages before that, like the supplies. Never been great for hydroxychloroquine (Plaquenil).

Katlyn: You were like, please, no, we need this, but I have to say that if you have a good pharmacist who, I mean, you, you see them to get your medicine filled all at the time. They, they were definitely thinking about you during that period. They definitely knew like, okay, Katlyn takes this daily. Let’s make sure we have some for Katlyn. So if you have a rockstar of a pharmacist, then you were pretty much good!

Dr. Megan: Exactly. They were—at least the pharmacists—know they were all like, “I have these patients who need hydroxychloroquine every day. Let’s leave it alone for them. And if we can get more great, but otherwise they need it and I’m representing them.” And that’s what makes a great pharmacist. A legitimate need for that.

So what would you tell others who are taking prednisone to expect based on all your experience?

What to expect on Prednisone

Katlyn: Well, I’m not going to sugarcoat it. I’m going to be honest, it’s super love and hate relationship with prednisone while fighting lupus.

There are probably going to be points in your treatment where you’re going to beg for a dose or beg to be on it.

And then there’s definitely going to be points in your treatment where you’re like, “why am I taking this? I don’t understand!” It’s just the fact that it has so many positives, but also so many cons are the side effects.

There are so many side effects. It’s crazy. The ones that affect me the most are insomnia night sweats. That’s terrible. Sometimes I have to take like two showers a day just because I’m sweating profusely and that’s all the prednisone it’s, it’s, it’s unfortunate, but, and I’ve noticed that it causes me some depression, definitely weight gain.

My face is a little puffy. It’s not as bad as it was, but since I’m going down lower and dose, but that can make you really self-conscious. Luckily I was on a higher dose when there’s the pandemic. And I get to where I’m asked to cover my eight chins.

“But yeah, definitely the side effects are rough, but in my opinion, it could be worth it for you, for sure. If you’re in pain and you can’t function, sometimes you just, you just have to take it.”

I remember my husband and I got married this summer and I stopped taking the prednisone because I was like, I need to be thin. I needed to look great in my wedding pictures. So then I wasn’t feeling good. I wasn’t feeling awesome.

And yeah, it’s, it’s a check and balance drug. I don’t know how else to describe it, but yeah. So it’s like, well, I don’t know. Did I make the wrong decision by stopping it? Probably. The shaking, insomnia, the depression, the night sweats, the bruising, the bone loss, weird lab results. Whenever I get blood work done, that’s really difficult.

And if I may, I’ll say the scariest thing that happened to me while on lupus, while on steroids, I’ve been having really, really bad hip pain and begging my doctors to take x-rays everything looks normal. Everything’s great until I’m like “No, there’s something wrong here.”

And I used my voice to convince my doctor to order an MRI. And we, I was terrified of osteonecrosis or something like that. Just terrified. And it turns out that there is something wrong with my hip, but it is not prednisone-related. Thank goodness.

But yeah, sometimes you just have to use your voice and fight for yourself, but those kinds of things are what you think of whenever you’re on prednisone is, “Oh my gosh. Osteonecrosis!”

Like, ah, I hear you. I heard the exact same thing, But I’ve been on such high doses is like, oh my gosh, I’m pretty sure I have osteoporosis. I was like, I need a walker now.

Dr. Megan: I had no problems either, but I mean, it’s really scary that you never know when you’re the one you is going to need a hip replaced.

Katlyn: Someone’s Gotta be a part of the statistic.

Dr. Megan: I feel like I’m always like the 1 0 1 and a hundred chance me. It was me.

Katlyn: I got that one joke, I guess it’s that my life is a series of unfortunate events and anything that can go wrong will certainly go wrong. But at least I have a good attitude about it.

Her Go-to Snack while on Prednisone

Dr. Megan: It’s going wrong. You’re smiling through it. So that’s what matters. Well, this has been awesome. So this is the question I always ask. If somebody is making friends is what is your go-to snack? When you have the munchies?

Katlyn: I have to say when I’m on prednisone,

I am a sucker for Mexican food. Give me the burrito and the chips and salsa and the guac. And I will be in my glory. It’s probably not a great idea because of all the salt in that stuff. It’s just going to make my squirreling worse. But yeah, I don’t know what it is, but I just to have Mexican food.

Dr. Megan: That’s awesome. I pretty much am like that all the time. So I’m glad that the friend zone, I haven’t actually heard anybody say Mexican. That’s cool. That’s unique.

Katlyn: Yeah. And then, because I’m on the prednisone, I get hangry. So it’s like, I need it right now or something’s going to happen.

Dr. Megan: Whatever, like, it’s one o’clock in the morning we’re finding the 24 hour Mexican food, right?

Katlyn: Absolutely. It’s taco bell open it’s 2:00 AM. They’re open, right. For people on Buddhism and why not?

Katlyn’s Advice

Dr. Megan: So finally, what is your best advice for people on prednisone?

Katlyn: So my best advice is to, and best in cotton and bamboo sheets and clothing pajamas because the night sweats they’re going to get you. I also am totally aware that I get moody very moody. So I do like one my husband and warm my colleagues like, Hey, I’m about to go to this dose. Sorry in advance. So that’s probably, yeah. I would say, I would say the most important is breathable clothing, cotton or bamboo, for sure.

Dr. Megan:That’s some good advice. Cause there’s nothing like feeling like you’re menopausal When you’re okay.

Katlyn: Listen, I will tell you guys a secret, there have been multiple occasions where I’ve woke up in the middle of the night, thinking that I peed myself. It was just sweat.

Dr. Megan: It’s so bad. I mean, I had like flood like hot flashes, like what I’m I’m 33. How can I possibly be getting hot flashes?

Katlyn: Right. Like this makes no surprise.

Dr. Megan: Oh, those are the best. Some really good advice. Thank you for sharing that. So I’m sure after watching this, everybody’s gonna be like, I want more of this. Where can they find you?

Katlyn: Sure, sure. So I would really appreciate it if you guys would check out my channel, that would mean a lot to me. So I am super loopy woman here on YouTube. I really would appreciate it. If you guys would check out some of my content, maybe hit the subscribe button totally free for you, but it really helps me out. And the reason I’d ask people to do that is that I’m sure we all know that YouTube is algorithm-based.

So the more people that watch my content give me a thumbs up, hit that subscribe button. It helps me to reach my goal, which is to reach out to other chronic pain sufferers and just let them know that they’re not alone. I’ve used to feel like that. And that is my goal is to get the word out there that you’re not alone. You’re not crazy. And, and I would really just appreciate it.

 

And that’s how the interview end! Talking with Katlyn was fun and this whole conversation was helpful. Her answers were very informative to help us understand what lupus is, what normal treatments are and what it really feels like to be on prednisone when you have to take it for lupus.

In her interview of me, I disclose a lot of details I’ve never shared before about how to combat side effects.

 

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