Showing posts with label pregnancy. Show all posts
Showing posts with label pregnancy. Show all posts

Wednesday, 9 July 2025

PODCAST: Two Moms on Starting a Family With Arthritis

From arthritis.org

Having a family is a wonderful gift. But starting a family with arthritis is not without its risks. One of the keys to making it a safe and joyful experience is proper planning. The truth is an unplanned pregnancy with a rheumatic disease can pose a threat to the health of both mom and baby. Ideally, getting your arthritis under control is step number one. In this episode, two moms with arthritis discuss their prepartum, pregnancy, childbirth, postpartum experiences and more. 

Show Notes

Having a family is a wonderful gift. But starting a family with arthritis is not without its risks. One of the keys to making it a safe and joyful experience is proper planning. The truth is an unplanned pregnancy with a rheumatic disease can pose a threat to the health of both mom and baby. More than 50% of women with a rheumatic disease don’t get medical advice before pregnancy. Ideally, getting your arthritis under control is step number one. Just three to six months of well-managed arthritis improves the chances for a healthy pregnancy. Getting pregnant, staying pregnant and delivering a healthy baby with arthritis can be challenging. 

In this episode of the Live Yes! With Arthritis podcast, two moms with arthritis explore these issues and more when it comes to starting a family with arthritis.

Cristina Schaefer: Hi, I'm Cristina Schaefer, your host for this episode. I was diagnosed with rheumatoid arthritis about 20 years ago and have been living through the ups and downs in different stages of my life ever since. I'm a long-time volunteer with the Arthritis Foundation, serving in roles at the national level and at the local level here in Houston, Texas. I'm also a mom to an almost 9-year-old daughter and a 6-month-old baby boy, which brings us to this episode's topic. 

Having a family is a wonderful gift, but starting a family with arthritis is not without its risks. One of the keys to making it a safe and enjoyable experience is proper planning. The truth is: An unplanned pregnancy with rheumatic disease can pose a threat to the health of both mom and baby. More than 50% of women with rheumatic disease don't get medical advice before pregnancy. Ideally, getting your arthritis under control is step number one. Just three to six months of well-managed arthritis improves the chances for a healthy pregnancy. Getting pregnant, staying pregnant and delivering a healthy baby with arthritis can be challenging. 

So, in this episode of the Live Yes! With Arthritis podcast, we'll explore these issues and more when it comes to family planning and pregnancy with arthritis. Today I'm joined by Natalie Decker Lemke. Natalie is a professional race car driver, one of the top young drivers in the NASCAR scene who started racing go-karts at age 9. She was born with juvenile arthritis and was officially diagnosed with JA at age 2. All that, and she's also a new mom. Natalie, welcome to the podcast. 

Natalie Decker Lemke: Thank you so much for having me. I'm so excited to chat with you today. 

Cristina Schaefer: Tell us a little bit about yourself and your experience with arthritis.

 Natalie Decker Lemke: Well, like you said, I was diagnosed at age 2. And I don't remember very much of my childhood with the beginnings of it. But as I got older, I started noticing, like, OK, my parents are giving me medicine once a week, like injections. I was taking methotrexate, and the only thing that really got to me was the medicine, because I didn't understand why I had to take it, because I felt great. And then when I would take the medicine, I would feel so sick for, like, three days. And so, I never understood it. And I was always going to the doctor’s every three weeks to get bloodwork done. And it honestly just felt normal. I didn't know any different. And eventually, around age 12, I went into remission, and it was amazing. I could stop that medication. I felt so good.

And a few years later, I was about 16, 17 years old, and all the symptoms started coming back. And then I was like, this is painful. Because I lived a couple of years with no pain. I was pain-free and no symptoms. And then it all came crashing down, and I had no idea truly how painful it was because I was born with it. I didn't know any different when it came to the swelling joints and all the stuff, the stiffness. I couldn't straighten my arms all the way; they were locked for years. I think I was about 9 or 10 years old when I was finally able to fully straighten my arm, both arms. I was just so used to the pain. So, when I had those few years of no pain, I was like, wow, this is truly amazing. Now I get it. (laughs) 

Cristina Schaefer: Yeah, pain is probably one of the most difficult things to describe. Or when they ask you the pain level 1 to 10, when you live with chronic pain, it's like, oh, I'm at a 3. But most people, that'd probably be more like a 9. 

Natalie Decker Lemke: I love seeing videos, like on TikTok or something, of other women talking about their pain levels, because it does blow my mind. I tell my husband every day, "If you woke up with the pain I had today, you would be staying in bed." And I'm up changing the diaper and feeding our baby. (laughter) 

Cristina Schaefer: Exactly. So, before we dive into pregnancy, birth and all things postpartum, let's talk about family planning. How were things prepartum for you with your arthritis and just everything, physically, emotionally, mentally? 

Natalie Decker Lemke: I always knew I wanted to have a family and become a mom, and as I was starting to really get control of my autoimmune disease, I then got diagnosed with psoriatic arthritis, psoriasis, Hashimoto, the thyroid-like hormonal stuff. So, I was just like all over the place, really struggling. All my hormones were way out of whack. And this was… We were already engaged, and I was like, "I will call off this wedding or move it to a different date," because I was like, "We're going to start trying for children now. I'm not waiting. I'm scared." 

I was terrified because of all these doctors telling me, "It's going to be so difficult. We don't like what your bloodwork says." So, I told my parents, I told Derek, "We're going to start trying for a baby now." And this was right after we got engaged. So, over a year before our wedding. I was like, either I'll be a pregnant bride or we're moving the date of our wedding. I didn't care. I did not get pregnant until well after our wedding. It was probably a full year of trying to conceive until we were successful with our little son, Levi. 

Cristina Schaefer: Yeah, it took us almost a full year to conceive as well. There was so much planning that went into it. I was in a controlled state with my rheumatoid, and I talked to my rheumatologist about my plans to conceive. And against his advice, I decided to go the “no medication” route. I had felt good for a couple years, so I think it kind of tricked me into thinking I could do no meds. And so, I went a full year trying to conceive. It wasn't happening. My symptoms were coming back, and I ended up having to do a few rounds of self-injectables, and then I magically conceived. 

Of course, after the fact, my rheumatologist was like, "Yes, your body was under stress, so you couldn't conceive." And I was like, "Well, I guess that makes sense." I don't think people realize that sometimes it takes a while to get pregnant when you're living with a disease. In hindsight, Natalie, with the planning and everything you did, is there anything you would've done differently or something you wish you would've known? 

Natalie Decker Lemke: I wish I wouldn't have been so stressed about it, because I do think that had a big play in it as well. But overall, the one thing I wish I would've known was that certain medications that I was still able to take through the pregnancy, what effects that would have on Levi once he was born. I didn't do my research, and I was on that medication since 2019. So, for a long time before we started trying to have a child. But I was on a beta blocker. 

I'm on it pretty much now for life with my high blood pressure, so I had to stay on it through pregnancy, and it's very safe. But I guess it makes it difficult for babies to regulate their blood sugar once they're here. So, that was part of the reason on why our baby was in the NICU for so long: He had to be on an IV of sugar water. And I wish I would've known that. I feel like I could have been a little bit more mentally prepared for that. 

Cristina Schaefer: Yeah, definitely. Just having a good understanding of how what you're taking can affect the baby, which is the biggest regret I have and one thing I did very differently the second time around: I actually listened to my doctor's suggestions. That first time around, I just wanted to feel I was having a normal pregnancy. But the truth is: No pregnancy is normal; everyone has different experiences and goes through different things. Let's talk about pregnancy. I know for me, the first was very different from the second. For me, the first was easy-breezy. The second pregnancy was a struggle almost every single day. How did you feel throughout your pregnancy? 

Natalie Decker Lemke: I love to hear that you had a good one, because I did not experience a fun pregnancy. I would tell my friends all the time, “I’m so excited. Like, it’s going to be so magical, it’s going to feel so amazing.” I just thought it would be like this amazing, magical thing, and it was the most miserable thing I've ever done for nine months. I was in so much pain every single day. 

Everything was perfect bloodwork-wise. I was so swollen; I was just so ill. Like every day, I just didn't feel myself. And it felt so similar to a flare-up, like, fatigue that, no matter what you do, it just didn't go away. And being nauseous, and my body just aching and hurting so bad. I was like, eventually this will have to get better as the pregnancy goes on, and it just never did. So, it was very scary for me, mentally I just wasn't doing well. But instantly, within 12 hours, maybe sooner than that after giving birth, I was completely myself again. I felt like myself instantly. 

Cristina Schaefer: A lot of women experience remission with their arthritis during pregnancy. I was lucky to experience that both times. But the second pregnancy, I was just wiped out every day. I just felt miserable every single day. And once he was born, like you, I felt a lot better. 

Natalie Decker Lemke: Yeah, and how can you hate being pregnant? Like, that's so magical. OK, now I get it. I hated it. I would rather give birth every single day than experience what I felt those nine months. (laughs) 

Cristina Schaefer: Absolutely. Let's talk about actual childbirth, because I feel very lucky that rheumatoid arthritis didn't actually affect the labour and delivery process for me either time. Tell us about your birth. How was it with your arthritis? And how was it going with a newborn? 

Natalie Decker Lemke: Well, that's amazing that it didn't feel like it affected you during the birth. I took all the medications and threw them out the window as soon as I found out I was pregnant, except for the beta blocker; that was the only thing I stayed on. And I was a little nervous. My rheumatologist supported me fully in that. She was like, "You can stay on your medicine until the third trimester if you want to, or you don't have to. It's up to you." I said, "I don't want to have to worry about it." So, I went off of that medication, and I was a little nervous that I was going to feel weak after nine months. But the whole birth and the whole time I was at the hospital was amazing. The team that I had around me made it feel so magical and so great. 

Cristina Schaefer: I almost feel like RA helped me with the labour and delivery process, because there were points where I was having apparently really major contractions. And I was fine, I felt OK. 

Natalie Decker Lemke: When I went into my 37-week appointment, I was not feeling good that day. I just had a feeling like I was going to be going to labour and delivery. And I told my husband, "Pack your cell phone charger." So, I knew it, I totally knew it. And I got to labour and delivery and yeah, he was a little bit in distress, and I was having contractions, like, every minute. And I had no idea. They're like, "You don't feel those?" I'm like, "No." (laughter) "And you guys told me I would know." They're like, "Well technically, you're in labour right now." 

Cristina Schaefer: (laughs) Yeah. 

Cristina Schaefer: Before we get into some postpartum experiences, let's talk about breastfeeding for a minute, because I know it's a hot button subject for a lot of people. I put so much pressure on myself to breastfeed, and I actually attribute that stress to being the trigger of what ended up being the worst flare of my entire life when my daughter was only 10 days old. She was crying. I got out of bed to feed her, and the second my foot touched the ground, I just felt pain from literally my entire body, from my toes all the way up my body. And it lasted a very long time. 

This time around, I wanted to breastfeed again, but as soon as I started feeling the symptoms come back, I got on meds that were safe to breastfeed with and ended up stopping when my son was about 4 months old. Just having to go back to work, I couldn't keep up anymore. Breastfeeding is hard, and it's so much work, and I feel like people don't talk about it. Did you decide to breastfeed or not? 

Natalie Decker Lemke: Well, even before I knew I was pregnant, I told myself, "I'm not going to breastfeed." I knew that if I was going to experience a flare-up and needing to rest or go get my infusion and be sleepy all day, I didn't want to feel guilty of being away from Levi for so long. And then the other thing is the medication that I do so well on is not friendly with breastfeeding. I would not be able to take it and breastfeed him. And I knew that I wanted to stick with that certain medication because it does so well for me. 

Then he ended up being in the NICU, and he had a feeding tube for the first 24 hours. So, then I remember looking at my husband and saying, "I am so glad that I already decided not to breastfeed," because if I came into the NICU excited to breastfeed and have that be my journey, I think that that would've been my last straw. That would've destroyed me, seeing him with a feeding tube. I don't know what I would've done. But knowing mentally already that I wasn't going to breastfeed, period, the feeding tube didn't bother me whatsoever. The only thing that bothered me was I wasn't able to feed him his first meal. But he won't remember that. 

Cristina Schaefer: I think that was so smart of you to go that route. Women, we just put more pressure on ourselves, period. Whether you're living with a rheumatic disease or not, we just put pressure on ourselves. We want to do things the right way. And breastfeeding, if it's causing stress, if it's causing lack of sleep, physical and mental fatigue, all of that can lead to flares. My daughter, we ended up having to give her formula anyway. She got a little bit of both, and then I had to be on medication that was no longer safe for her to be breastfed anymore. 

Natalie Decker Lemke: There's some moms that shame moms for not breastfeeding. Or they're like, "You're giving your child poison." There's so many children that were bottle-fed with formula that are 35 years old right now, and so healthy and thriving. It didn't ruin them. (laughs) They’re doing great. 

Cristina Schaefer: My daughter is one of the smartest kids in her class, so I'm pretty sure she's doing fine. 

Natalie Decker Lemke: It was the formula. (laughs) 

Cristina Schaefer: I think it was the formula, exactly. (laughs) So your son is almost 5 months old, correct? 

Natalie Decker Lemke: Yes. The time flies so fast. 

Cristina Schaefer: It flies by. Mine is 6-and-a-half. I think we're just exactly one month older than you. How has it been? How are you doing? And how are you feeling today? 

Natalie Decker Lemke: I feel incredible. I have been loving the postpartum journey so much, and I know that's not the case for a lot of moms. And instantly, as soon as I came home, no pain whatsoever anywhere in my body. And then about three, four weeks go by and it just, like, went so downhill so fast. And I, still to this day — waking up in the morning is probably where my pain is the highest. I'll walk funny with a limp or really stiff-looking for about two to three hours in the morning until my body fully gets woken up, and the pain then goes down a lot throughout the day. I don't think it's going to be forever. 

My rheumatologist did tell me that, you know, a few months after you give birth and all the hormones leave your body eventually, and you'll have a flare-up, and a lot of women experience their worst flare-up ever after giving birth. I'm getting through it. But having my son, I feel like maybe he just gives me a little bit more motivation and energy and happiness. Doing this has just been a dream come true. 

Cristina Schaefer: I think one blessing of having a rheumatic disease like this is that you are trained to pay attention to everything that's going on with your body. You're trained to just say like, "Oh, I'm feeling down today. I need to do something about this," right? Because we know all of that can trigger flares. And so, we have to be so conscientious about what we're doing and how we're managing our time and our efforts and if we're resting enough. But when you're taking care of a baby, sometimes that goes out the window, and we, as moms, just focus on taking care of the baby. You still have to take care of yourself, or you won't be able to take care of that baby. 

Natalie Decker Lemke: Exactly. And that's something that I've learned from having arthritis. And you know, resting is good. You're not lazy if you need a day to rest. And some people feel so guilty about resting, especially moms. If you need a day to rest, that's healing, and that's what you need, and that's good for you. Resting is not lazy. And if your body needs it, that's what you should be doing that day. 

Cristina Schaefer: Absolutely. What has been the hardest thing for you? 

Natalie Decker Lemke: The pregnancy was the hardest. 

Cristina Schaefer: I think the hardest thing for me this time has just been knowing that sometimes I have to let go. I cannot control everything, no matter how much I try. You know, I can't control a flare just as much as I can't control my baby's sleep schedule. (laughter) I've had to learn to just let go in a lot of ways and stop thinking of letting go as failure, but as a shift of focus to things that I can control. And I know you, as a professional race car driver, you understand the want to always win. 

Natalie Decker Lemke: Yeah. (laughs) 

Cristina Schaefer: Letting go doesn't mean you're losing. It just means that you're shifting your focus, and I really had to teach myself that. 

Natalie Decker Lemke: A couple years ago I learned this equation: It's A plus B equals R. And A stands for everything you can control in your life, B stands for everything you can't control, and then R is the result. So, if you always just focus on everything you can control, you're always going to have your best result, because you can't control B, and it's going to be what it's going to be. Just focus on what I can control, especially when it comes to my health and how I feel for when I can be there for my son. 

Cristina Schaefer: I love that. I'm going to remember that equation. 

Natalie Decker Lemke: Write it down. (laughs) 

Cristina Schaefer: What has been the most rewarding thing? 

Natalie Decker Lemke: I was so nervous, because I wasn't breastfeeding, that he wasn't going to have that really strong connection with me. But as he's gotten a little bit older, I see it and it’s there and it did not change anything about that. 

Cristina Schaefer: Experiencing that worst flare-up of my life when my daughter was 10 days old, that really brought me down mentally. And you were saying that your son kind of brightens you up and pulls you out of it. I felt the exact same way. In fact, I started referring to her as my little ray of light because there's this darkness that I feel. But looking down on her, I would just think to myself, "You are so worth it." And then now seeing my daughter holding my son and playing with him, and she's just obsessed with him, and seeing the two of them together and seeing our family now complete as we wanted, I mean, there's no better feeling in the world. 

Natalie Decker Lemke: That's so sweet. 

Cristina Schaefer: Before each episode, we post a question on social media. For this episode, we asked: "How did arthritis impact your journey to becoming a parent?" We received so many wonderful, moving comments. So, here are just a few we can briefly discuss. The first one was from Linneia Marie. They said, "My first was a surprise. I stopped some of my meds cold turkey in fear. Only one med really needed to be stopped, but that caused a lot of pain throughout pregnancy. Prednisone helped a little, but it was rough. My second one was planned. I weaned off meds I needed, and while weaning, I was put on prednisone. That pregnancy was much better." I feel like I had the opposite story that she did. We were so planned, the first and not the second, but any thoughts there? 

Natalie Decker Lemke: All pregnancies are different, no matter what. And everyone keeps reminding me of that. I’m going to just go off of the hope that my second pregnancy could look so much different than my first. 

Cristina Schaefer: Samantha O'Neil said, "Diagnosed at 8, trying to start a family now, and it has been a very difficult journey. I wish they told me as a teen/young adult that I might have issues conceiving due to my RA." 

Natalie Decker Lemke: I wish I would've known, too, when I was younger. And that's just something that I feel like maybe not a lot of rheumatologists talk about. Especially when you're diagnosed at such a young age. When you're 8, you're not thinking about family planning, so it just never ever gets brought up. And then by the time you are wanting to start a family, it's, like, almost too late because it's like you never had that conversation. And now you're trying to catch up. And that's how I felt, too. 

So, I think that it's just, like, scary in general. And finding the right doctor… I always tell everyone: doctor shop. Shop around, because once you find the right doctor, they're going to, like, really want to support you in all the decisions you make: family, career, everything. And they're going to really try to focus on what medication's best for you and what you're trying to do with your life. It took me since I was 18 until I was 21, 22; that's how long I doctor-shopped around. (laughter) 

Cristina Schaefer: And I think this is a hard conversation. They were saying as a teen/young adult, you know, a lot of people, if they've grown up with juvenile arthritis, they might still be with their juvenile rheumatologist at that age. Maybe they haven't transitioned to an adult rheumatologist yet. You might be moving from one doctor to another. You might be going to college or experiencing different things and kind of put in different transitional periods. But that's really the time that that conversation needs to be had. Had I known, we would've started trying earlier in our marriage. We waited three years and then a whole another year of trying to conceive. It's definitely a conversation that I think needs to be had more. 

Anu Nigam said, "I was diagnosed a couple of years before I had my child. I'd been on the anti-TNF and methotrexate, which had to be stopped, of course. I was put on a high dose of steroids and asked to take nothing more than Tylenol. Pregnancy was not a pain-free journey for me as a consequence. After my child was born, I continued to battle with the pain for three months, after which I spoke to the paediatrician and told him I couldn't deal with the pain and the stresses of being a first-time mom of a premature child with gastric reflux. He understood. My child went on formula, and I returned to normal RA meds and was much happier for it. It enabled me to do more for my child. When the anti-TNF I was on stopped working for me, I was put on a biologic that altered my life significantly. Not only could I walk up and down the stairs pain-free, but I could also carry my baby as well. A first, a win. I am still on it and grateful. My baby starts high school in the fall." 

Natalie Decker Lemke: Wow. That's a beautiful story. I am on Simponi. I used to go in every eight weeks for an infusion, and now I do the at-home injectable, which… That's a biologic, and it changed my life as well. So, I love hearing that. 

Cristina Schaefer: Yeah. The medication that I was on for years: I would get Remicade treatments for years prior to my daughter being born. It didn't work for me after she was born. So, we went through years of trying different medications. Literally, it took five years before I found an oral daily medication that I started taking, and that changed my life and made me feel so good until I got pregnant with my baby boy. And now I'm actually on self-injectables. And they're working for me. 

Natalie Decker Lemke: It all changes. 

Cristina Schaefer: Yeah, just see what works when it works, I guess. Jordan Dry said, "Diagnosed when I was 9 years old. I had so much time living with it before having kids. However, growing into adulthood with RA brought new challenges, as if I was diagnosed all over again. There were challenges during both of my pregnancies, with each of my boys being born prematurely. My medical team attributed their births to the possibility that my body was fighting with each pregnancy. However, having RA has helped me understand somewhat of what my youngest experiences with his cerebral palsy. Even through the pain, fatigue and more, blessings continue to outweigh the RA." 

Natalie Decker Lemke: Wow. Yeah, you know, I just think that it's so incredible to hear all these stories of so many women experiencing all of this pain. When it's a 10, like, we're not joking, it's a 10, and we live with that. And to hear stories like that, it's just so incredible. Moms are really strong. 

Cristina Schaefer: We certainly are. This is a topic we have not touched on. Deepka Venkat said, "I worry that my children may have inherited my RA genes." Natalie, I'm sure I worry about that every single day. Is that something you're worried about as well? 

Natalie Decker Lemke: That's something that I was worried about well before even meeting my husband, and I would talk about it a lot with my family, and it scares me. But at the same time, my mom would remind me, "Look, you know what it's like to live with it, so you'll be the best caretaker and help and give the best advice, and you're not going to be scared to advocate for your child in the doctor's office, because you've been doing that for yourself your whole life." So, then I got over that fear really fast, and that is not bothering me whatsoever. 

The one fear I had was then, before having my son, which now it's not a fear anymore because I'm living it and feel like I'm thriving, was not being able to take care of my child the way I wanted to because of my arthritis and the pain. There's been a lot of parents at a lot of different Arthritis Foundation events that have talked to me, and they were like, "Are you upset that you have arthritis? Like, do you feel like it's ruining your life?" And I was like, "No." And they're like, "Your child will feel the same way." 

Cristina Schaefer: Yeah. That's such a good point. As patients, we've been kind of forced to always pay attention to our bodies. You know, kids experience legitimate growing pains. And when I was a child, my doctor believes that I had rheumatoid arthritis, but it was undiagnosed, or juvenile arthritis, but it was undiagnosed. My mom kept taking me to doctors, and they kept saying it was growing pains. But my daughter, there's sometimes that she is in pain, and she'll be crying and, you know, we'll need to put something on, a cream on her, to help with the pain and things like that. 

And I was sharing this with a paediatric rheumatologist that I know that is also involved with the Arthritis Foundation. He said, "Cristina, you'd be the perfect mom for a child with JA because you're watching everything. You're paying attention to everything. You know what to watch for, you know to look for hotspots and nodules, and you know all of these things. So, if that ends up being something you have to deal with, she's got the perfect mom for it." 

Natalie Decker Lemke: Exactly. 

Cristina Schaefer: Another comment we have here from Cristina Saunders said, “I was diagnosed with arthritis at 14, so it has been a part of my life as long as I can remember. When I started trying to have children, I went through many, many miscarriages, which was incredibly difficult, not just on me but also my husband. During my one successful pregnancy, I had to give myself daily heparin injections. My son is now 20, and I’m so thankful for him. Heparin did not work for a subsequent pregnancy, so it’s difficult to know if that’s what helped. 

“Something I didn’t expect was that my arthritis went into remission around 20 weeks into the pregnancy and stayed quiet until he was about a year old. That time gave me the relief and helped me focus on being a mom. I loved being pregnant. Living with arthritis while raising a child has had its challenges, but it’s also brought a lot of strength I didn’t know I had. You are not alone.” I did get to experience remission. Did you experience that as well, Natalie? 

Natalie Decker Lemke: I was technically in remission when my rheumatologist would do my bloodwork because I was always nervous that I was having a flare-up, because all my symptoms I was feeling during pregnancy felt like a major flare-up. But it was not anything to do with my rheumatoid arthritis or my psoriatic arthritis. Everything was all in check and really good. So technically, yes. And she told me, "Once you get pregnant, you're probably going to experience remission. Most women do." So, I was so excited. I'm like, I'm going to feel so good while I'm pregnant. But that wasn't the case. 

I feel like I hear so many women talk about going into remission and how good they feel. That's so incredible. That just shows, like, how incredible our bodies are while we're growing a baby and how strong we are, and how magical it is… a disease that doesn't have a cure, and you get pregnant and you most likely will go into remission, it's mind-blowing. 

Cristina Schaefer: To close each episode, we typically share our top three takeaways from the episode. So, Natalie, what are your top three takeaways from today? 

Natalie Decker Lemke: My top three takeaways would have to be: Going into remission while you're pregnant is incredible, that that is even a possibility. Medications that you're able to be on while pregnant, that are safe during pregnancy, they still can affect your baby once your baby's earth-side with you. And that's something that I did not know and was so, like, scared to find out after I gave birth. And then the last one is breastfeeding. That is, like, the major one. Don't put the pressure on yourself. If you want to go back on medication after pregnancy, don't feel guilty about it. Do what's best for you as a mom, so that you can be the best version of yourself and feel good and strong. And there's a fourth one, OK, sorry. (laughs) Resting. Resting is not guilty, don't feel guilty about it. If you need to rest, rest, so you can be strong for tomorrow. 

Cristina Schaefer: Well, you saying the piece about resting hits home with me so much. One of the things that I've learned is to let go a little bit, not feeling guilty about it and not feeling guilty about resting. It's OK that I haven't vacuumed the house, because I do need to just lay down for a minute. We're just going to raise our babies the absolute best we can, no matter what, given the tools that we have. And that's OK. Then just…  and I think that's my third one, is just remembering it's all going to be OK. Everything's going to be fine, no matter if you gave them the wrong formula or fed them something you weren't supposed to feed them or they had a reaction or what... Everything's going to be OK at the end of the day. And I think that's an important thing for every parent to remember. 

Natalie Decker Lemke: And there's another thing I want to add is: Don’t be afraid for asking for help or when someone's offering to help to let them help out. Because I know, like, a lot of moms put pressure on themselves to do it all and always be there for their child, but they're not going to remember that one time that you might need to step away or do something else mentally for yourself. Going into pregnancy and going into postpartum, I kept telling myself, like, "Don't worry, and don't feel bad about accepting help or asking for help." And I really believe that is a reason on why I feel so good and so confident as a first-time mom is: Because when I have to step away, I'm like, I'm not going to let it get to me and emotionally affect me, and that it's good, and I should be proud of the support system I have around me and happy that I have that. 

Cristina Schaefer: And not to feel guilty for letting people help. Because I know in my experience, those grandmas love to step in whenever I give them the chance to. 

Natalie Decker Lemke: Exactly. 

Cristina Schaefer: But sometimes I would still feel guilty, or say to my husband like, "Oh, I feel bad that I had to ask them for help." And he's like, "Stop that. You know that they want to help." 

Natalie Decker Lemke: Yeah. 

Cristina Schaefer: So, like you said, being proud of that village you surrounded yourself with. 

Natalie Decker Lemke: And just think, your babies are growing up with so much love around them then. It's not just always mom, or mom and dad; there's multiple people that are spilling love into their lives, and that's what's so beautiful about it. 

Cristina Schaefer: Well, Natalie, this has been such a great conversation. And I'm so glad that both of us, us two moms, got to sit here and discuss this. And hopefully other moms can take away from this, or people who are thinking about starting a family can take some good pointers away from this and just remember some of the things that we shared today. 

Natalie Decker Lemke: Yes. I had so much fun chatting with you. Thank you so much for having me on. 

Cristina Schaefer: Well, that's it for this episode. For more arthritis resources, educational opportunities and information about family planning and more, remember, you can visit arthritis.org. 

PODCAST CLOSE: Thank you for listening to the Live Yes! With Arthritis podcast, produced as a public service by the Arthritis Foundation. Get show notes and other episode details at arthritis.org/podcast. Review, rate and recommend us wherever you get your podcasts, on Apple, Spotify and other platforms. This podcast and other life-changing Arthritis Foundation programs, resources and services are made possible in part by generous donors like you. Consider making a gift to support our work at arthritis.org/donate. We appreciate you listening. And please join us again!

https://www.arthritis.org/liveyes/podcast/episodes/two-moms-on-starting-a-family-with-arthritis

Wednesday, 22 November 2023

Rheumatoid Arthritis Treatment: A Guide to Symptom Management

From verywellhealth.com

Treatment goals for rheumatoid arthritis (RA) are to reduce pain and inflammation and prevent disability. An RA treatment plan usually includes medications and nondrug therapies. Surgery is considered when joints are damaged or no longer work.

Rheumatoid arthritis is a chronic disease that causes inflammation of the synovial linings of joints. RA inflammation can be so severe that it damages joints and other body tissues. There is no cure for RA.

Medications used in the treatment of RA include nonsteroidal anti-inflammatory drugs (NSAIDs) and other pain-relief drugs and topicals, non-biologic disease-modifying anti-rheumatic drugs (DMARDs) like methotrexate, biologic DMARDs, corticosteroids, and Janus kinase (JAK) inhibitors.

Non-drug options include physical therapy, style therapies, and home remedies. Surgery is considered when other therapies have not helped or joints are damaged and no longer function correctly.

This article will cover nondrug and medical treatments for RA, treatment in early RA and as RA progresses, managing flares, and more. 

Rheumatoid Arthritis Non-drug Treatments

Treating RA with medications is crucial, but some nondrug remedies might help to relieve pain and stiffness from RA. 

An illustration of a person in pain and spots showing where Rheumatoid arthritis commonly happens.

Illustration by Julie Bang for Verywell Health

Physical Therapy

According to the American College of Rheumatology (ACR), physical therapy is vital to managing RA. Research from the ACR shows people with RA who engage in physical therapy see improvement in pain levels and physical function.

Physical therapy combines exercise, hands-on care, and patient education. A physical therapist can examine you and develop a treatment plan that improves movement, restores function, prevents disability, and manages pain.

Joint Protection

For people with RA, occupational therapy services can include managing daily activities, joint protection, activity pacing, fatigue management, work simplification, splints, orthotics (custom-made shoe inserts), use of assistive devices, stress management, and more.

Assistive devices can help take the stress off inflamed joints and protect them from injury. For example, if you have an inflamed knee or hip joint, consider using a cane on the opposite side to reduce weight on the joint and improve stability. 

You might also consider pens, toothbrushes, and cooking utensils that are easier to hold for people with joint pain. If raising your arms is painful, consider using a reach tool to reach items on high shelves. 

Exercise 

Exercise is an integral part of your RA treatment plan and is most effective when done every day. Physical activity includes aerobic, aquatic, and resistance exercise:

  • Aerobic exercise improves cardiorespiratory fitness and muscular endurance. Examples include cycling, running, hiking, walking, and aerobic workouts.
  • Resistance exercises increase muscle strength and include free weights, resistance bands, and Pilates.
  • Aquatic exercises provide both aerobic and resistance benefits. They include activities like swimming, water walking, and water aerobics. 

Rest

RA is a disease that goes through periods of flare-ups in which symptoms become worse and periods of remission in which symptoms improve. Getting plenty of rest when your RA flares up can help reduce joint inflammation and pain, as well as improve fatigue. 

Hot and Cold Therapies

Ice packs and heating pads relieve local pain, swelling, and stiffness. Cold therapy can bring down inflammation to reduce pain and other RA symptoms. Heat therapy increases blood flow to ease joint stiffness and cramping in the muscles around the joints. You can alternate between cold and hot therapy options as needed.

The ACR also recommends heat and cold therapy as medical treatment. Examples of heat and cold therapy in the medical setting include cryotherapy, therapeutic ultrasound, infrared sauna, paraffin therapy, and cold laser therapy.

Diet 

A healthy diet helps to protect overall well-being, improves energy, manages weight, keeps the immune system strong, and boosts mental health. While diet alone can't treat RA, eating a healthy and balanced diet can go a long way in helping you to feel better.

The ACR recommends adherence to a Mediterranean-style diet over no formally defined diet.1 This diet promotes eating vegetables, fruits, whole grains, nuts, seeds, and olive oil, with moderate amounts of low-fat dairy and fish. Many of these foods can help to keep inflammation down.

The Mediterranean diet also limits sugars, sodium, processed foods, refined carbs, and saturated fats—all believed to increase inflammation. 

Stress Management 

Stress can make RA symptoms worse, although researchers are not entirely sure about the link between RA and stress. It is believed that the body's stress response might contribute to inflammation. Stress response can increase pain, affect your sleep and mood, and create a vicious pain, sleep, and mood cycle.

Consider all how you can manage stress as you work to keep your RA in check. Your stress management plan might include meditation, exercise, talking to a friend or a mental health professional, and finding ways to exercise self-care (i.e., getting plenty of rest, pacing yourself, taking breaks, etc.).

Some people with RA smoke, sometimes as a way to manage stress. However, studies have shown that smoking can worsen RA and reduce the effects of medications used to treat the condition.

 RA is also a risk factor for heart disease, and smoking can further increase your risk.

If you are having a hard time quitting, let your healthcare provider know. They can give you information about programs and products to help you quit.

CAM therapies are non-traditional therapies typically used in addition to your RA treatments. CAM therapies can offer pain relief and symptom improvement.  

Your CAM options for managing RA might include:

If you want to try any of these CAM therapies to manage RA symptoms and pain, ask your healthcare provider which might help you and if these therapies are safe for you to try. Some herbs and supplements can interact with medications you are taking.

The target-to-treat approach for RA is backed by good evidence. With this approach, healthcare providers decide on a goal and adjust medications and other treatments until the goal is achieved. This approach aims to achieve remission or low disease activity in which symptoms are managed and quality of life is maintained.

Medication options are numerous for treating RA. They include over-the-counter (OTC) and prescription pain relievers, corticosteroids, non-biologic DMARDs, biologic DMARDs, and JAK inhibitors. Your healthcare provider can recommend the best options for managing RA.

OTC Pain Relief

Most healthcare providers recommend NSAIDs for reducing RA pain and inflammation. These are sold over the counter (without a prescription) under different brand names, including Advil and Motrin (ibuprofen) and Aleve (naproxen). Tylenol (acetaminophen) can help with mild joint pain but does not reduce inflammation.

You can also use OTC topical pain relievers to manage RA pain. These are applied over painful joint areas and will have fewer side effects than oral pain relievers. These fall into a few general categories—salicylates, NSAIDs, lidocaine, menthol/camphor, capsaicin, and newer cannabidiol (CBD) options.

Always follow the manufacturer's instructions for safe and effective use. Inform your healthcare provider if you experience side effects, including skin irritation.

Prescription Pain Relief

Your healthcare provider can prescribe more potent versions of oral OTC pain relievers. They can also prescribe others unavailable over the counter, such as Celebrex (celecoxib) and Mobic (meloxicam), and prescription-strength topical pain relievers, including Pennsaid (2% diclofenac) and lidocaine patches. A less-potent version of diclofenac, sold under brand names such as Voltaren, is available without a prescription. 

Corticosteroids 

Corticosteroids like betamethasone, cortisone, methylprednisolone, and prednisone can help reduce inflammation in RA. They are available as oral medicines and injections. These drugs might also reduce pain and damage from inflammation. 

These medicines are typically not recommended for long-term use. They are known for causing severe side effects, including stomach ulcers, high blood sugar, high blood pressure, mood changes, eye problems, and osteoporosis.

Non-Biologic DMARDs

DMARDs can decrease inflammation by slowing down the progression of RA. When the disease processes are slowed down, you will experience fewer symptoms and less damage over time.

Some of the most common non-biologic DMARDs used to treat RA are:

Biologic DMARDs

Biologics, another type of DMARDs, target specific molecules that lead to inflammation. These drugs work much quicker than non-biologic ones and might have fewer side effects.

Biologics are given as injections and infusion treatments. Biologic DMARD classes include tumour necrosis factor (TNF), B-cell, T-cell, and interleukin-6 (IL-6) inhibitors.

Some of the most common biologic DMARDs used to treat RA are:

  • B-cell inhibitor: Rituxan (rituximab)
  • IL-6 inhibitors: Actemra (tocilizumab) and Kevzara (sarilumab)
  • T-cell inhibitor: Orencia (abatacept)
  • TNF inhibitors: Humira (adalimumab), Cimzia (certolizumab pegol), Enbrel (etanercept), Remicade (infliximab), Simponi (golimumab)

JAK Inhibitors 

Your healthcare provider may prescribe a JAK inhibitor when non-biologic and biologic DMARDs aren't helping to manage RA symptoms. These medicines can affect genes and the activity of immune cells to prevent inflammation and stop joint and tissue damage.

Currently, three JAK inhibitors are available to treat RA. These include:

  • Olumiant (baricitinib)
  • Rinvoq (upadacitinib)
  • Xeljanz, Xeljanz XR (tofacitinib)

Managing RA While Pregnant

It is possible to continue treating RA during pregnancy. About 50% of pregnant people with RA will experience remission during pregnancy. Only 20% will experience worsening disease activity during pregnancy and will need medication adjustments. The remaining number of pregnant people with RA will have unchanged disease. 

Some RA medications should not be taken before pregnancy, during pregnancy, and if breastfeeding. 

These include:

  • Acetaminophen 
  • Corticosteroids 
  • NSAIDs
  • JAK inhibitors 
  • Leflunomide
  • Methotrexate 

Some medications might be safer for you to take before pregnancy, during, and after, and may include:

  • Some biologics, including some TNF inhibitors. 
  • Hydroxychloroquine
  • Sulfasalazine 

Your healthcare provider will monitor your RA progression during pregnancy. As symptoms and function improve, your provider will adjust medicines or recommend nondrug options for managing disease symptoms. 

RA Treatment Effectiveness 

Guidelines for treating RA come from the ACR and get updated every few years. Updates usually occur as new treatments are released, older drugs are reassessed, and new evidence emerges regarding nondrug treatments.

Many medications used to treat RA are potent and can produce side effects, but are used because the evidence suggests that the benefits outweigh the risks.

Each person's treatment approaches for RA are tailored based on disease severity. Disease severity is typically classified from mild to moderate, severe, and end-stage. 

Early to Moderate RA

In stage 1, or early RA, you will experience the earliest symptoms of RA, including morning stiffness and pain in the small joints of the hands and feet. Symptoms during this stage are subtle, which may make it harder for a healthcare provider to make a diagnosis.

If you are diagnosed early on and start treating the condition, there is a better chance of disease remission. Treatment options in early RA include NSAIDs, methotrexate, other non-biologic DMARDs, and low-dose steroids.

In stage 2, or moderate RA, inflammation of the joint linings may cause damage, and you will experience pain and limited motion in affected joints. Inflammation may affect other body tissues, especially the skin and eyes.

Most people get a diagnosis during stage 2, and treatment can reduce further damage and get symptoms under control. Your healthcare provider may add a biologic drug or JAK inhibitor to your treatment plan at this stage. 

Severe RA

By the time RA progresses to stage 3, it is considered severe. There might be more pain and swelling. Some people may also have muscle weakness, mobility loss, and bone and joint damage. If biologics and JAK inhibitors fail to manage symptoms, your healthcare provider will recommend another biologic or a different class biologic.

Stage 4, or end-stage RA means that affected joints no longer work, and symptoms include severe pain, swelling, stiffness, and loss of function. Progression to the stage can take years or decades, and most people who treat RA effectively never make it to stage 4.

Surgery is a last-resort treatment for RA that has damaged joints and limited mobility. Common RA surgeries are joint replacement surgery, joint fusion, and tendon surgery.

RA is generally not a fatal condition, but disease progression and complications of the condition might affect life expectancy. Mortality risk in people with RA can increase over time and seems to peak 20 years after diagnosis. Respiratory conditions and cardiovascular diseases are significant risk factors for premature death.

Fortunately, newer, more aggressive RA treatments have reduced such complications and increased the potential for disease remission, which means people with RA are living longer.

Treatments and outcomes for RA have significantly advanced over the past couple of decades. In addition, earlier diagnoses, better treatment approaches like target-to-treat, and improvements in DMARDs have allowed people with RA to live with less pain, fatigue, and disability. 

RA medications work best with integrative therapies (psychotherapy approaches), including mind and body therapies, talk therapy, and cognitive behavioural therapy. Some CAM and nondrug therapies, including acupuncture, exercise, and diet, are also considered integrated therapies.

If you want to try integrated therapies to manage RA better, talk to your healthcare provider. They can make recommendations based on your unique health situation. 

How to Manage RA During Flares

People with RA have periods in which the disease flares up, and inflammation levels and disease activity are high. The most common symptoms of a flare-up are severe joint pain, swelling, stiffness, and fatigue. A flare-up can last for a few days, or it can last for weeks or months.

Specific events can trigger RA flares. Triggers include diet, stress, illness or infection, weather changes, overdoing activities, missing medicine doses, and smoking. You can reduce flare frequency by avoiding triggers.

Resting is OK if you feel you need extra sleep during a flare. But you will still want to try to move your joints. Consider activities that are easy on the joints, such as stretching and walking.

Keep stress levels down while recovering. Try massage, warm baths, and OTC oral and topical pain relievers to manage pain and reduce inflammation. Try to make healthy food choices by avoiding inflammation-producing foods and adding anti-inflammatory options to your diet.

Contact your healthcare provider if your flare-up lasts longer than a few days or worsens. They can prescribe a corticosteroid or other treatments to quickly reduce inflammation and manage symptoms, including pain.

RA Treatment Advancements 

RA is a chronic condition without a cure. Fortunately, you have plenty of options for treating it, and therapies for treating RA continue to increase. As researchers develop and improve treatments, your healthcare provider might change your treatment plan to manage your disease better. 

Some of the newest treatment options available and in testing include:

  • Biosimilars: These drugs are very close in structure and function to biological drugs. Biosimilars offer a more affordable option for some people with RA.
  • IL-inhibitors: These agents inhibit the action of interleukins, which are proteins that promote inflammation.
  • Targeted synthetic DMARDs, including JAK inhibitors, target specific parts of the immune system to halt inflammation and inflammatory processes.

Talk to your healthcare provider to learn more about the latest available treatment options. They can share all the potential benefits and risks of changes to your treatment plan. They can also recommend lifestyle changes and the best ways to improve your outcomes. 

Summary 

Rheumatoid arthritis is a chronic disease without a cure. Fortunately, the condition is treatable and manageable. Treating RA aims to achieve the lowest possible disease activity or remission, minimize joint damage, and improve function and quality of life. 

Treating RA involves an integrated approach that includes nondrug and drug options. Non-drug options for RA include physical and occupational therapies, lifestyle changes, and CAM therapies.

Drug treatment options include OTC and prescription pain relievers, non-biologic DMARDs, biologic DMARDs, corticosteroids, and JAK inhibitors. Surgery is considered a last resort treatment for managing severe RA in which joint damage and loss of function have occurred. 

You will need to take medications to treat RA for the rest of your life. You must also manage disease flare-us to avoid joint damage and worsening symptoms. Manage flares with rest, some activity, diet, and corticosteroids. 

Your healthcare provider can recommend treatment options based on your disease status and overall health. They can advise you on each treatment option's potential benefits and risks. They can also recommend lifestyle changes to help improve treatment outcomes.  

https://www.verywellhealth.com/rheumatoid-arthritis-treatment-8400843