90% of Lupus Patients are Women + Finding Relief with Cannabis

Ellen Lee Scanlon (00:00):

This podcast discusses cannabis and is intended for audiences 21 and over.

Christine De La Rosa (00:06):

So I remember sitting in my mom’s kitchen and we were talking and they’re super excited because I’m home, and so I said, “I came home because I really wanted to talk to you about something.” I said, “The reason I look this way, the reason I feel this way, the reason my doctors cleared me for the plane is because I have been using cannabis to help me with my lupus and it’s been very transformative.” And I remember my dad’s looking down and my mother’s trying to compute what I’m saying, and I said, “Do you see me now? I’m not walking with a cane, my eyes are brighter, my skin looks healthier.” And I said, “I would not be here today, I would not be with you in Texas today if I had not switched to cannabis. Mom, you told me when I was growing up, ‘Don’t smoke marijuana because they’re going to think you’re a lazy Mexican.'”

Christine De La Rosa (00:59):

For the longest time, I didn’t try cannabis because I come from a Mexican Catholic household. And when I realized that this propaganda that we were sold as people of color has kept us from being able to heal holistically.

Christine De La Rosa (01:13):

And we are just totally backwards in this country where we think that’s okay and a plant is not. This is what saved me. And my mother and my father loved me very much so they were like, “Yes, we get it now.”

Ellen Lee Scanlon (01:33):

Welcome to How to Do the Pot, a podcast demystifying cannabis for women. I’m Ellen Scanlon. You just heard from Christine De La Rosa who has been living with lupus since 2010. Christine is the co-founder of The People’s Ecosystem, a BIPOC cannabis company fighting for social economic equity and sustainable cannabis policies.

Ellen Lee Scanlon (01:57):

Today, we’re going to continue the conversation we started about cannabis and autoimmune diseases. Last week in episode 146, we shared Timeka Drew’s story about treating Crohn’s disease with cannabis, and today we’ll hear Christine’s story about how cannabis helps treat her lupus. Dr. June Chin, a New York based doctor, and Sandra Guynes, who’s also known as “the kush nurse”, will help with practical tips for how to talk to your doctor about medical cannabis and what’s important to know about drug interactions.

Ellen Lee Scanlon (02:31):

I’ve been getting a lot of questions about how cannabis is helping patients with multiple sclerosis, polycystic ovarian syndrome, also known as PCOS, and Parkinson’s disease. If you or someone you know has a personal story that you would be willing to share with us, please send an email to hi@dothepot.com, or DM @DoThePot.

Ellen Lee Scanlon (02:54):

This summer, we are re-releasing some of our most popular episodes about how cannabis is helping women improve their health and treat symptoms of disease without the pharmaceuticals that often cause really challenging side effects. And please be warned, these episodes may have some graphic medical explanations.

Ellen Lee Scanlon (03:15):

I am so passionate about sharing this information and hope it helps you or someone you love who may be facing health issues and is looking for answers. I’ve been sick a lot this year and have struggled with really slow recoveries, so I can relate to how frustrating not feeling well for a long time can be. I’m using this time to rest and recover and would really appreciate you sharing this episode with anyone you think it might help. Thank you.

Ellen Lee Scanlon (03:55):

Lupus is an autoimmune disease that affects about 1.5 million Americans, and 90% of them are women. Lupus is also two to three times more likely to affect women of color. Dr. Chin explains more about lupus and its symptoms.

Dr. June Chin (04:12):

I see so many patients with lupus. It’s a disease that occurs when your body’s immune system attacks its own tissue and organs. So it is an autoimmune disease and it can affect different parts of the body, like joints and skin, your kidneys, your brain, your heart and lungs. And a lot of patients just feel fatigue all the time. Not only just pain, but they’re just tired all the time, because there’s just chronic inflammation.

Ellen Lee Scanlon (04:37):

Christine De La Rosa was a successful database architect living in the Bay Area when she started to get sick.

Christine De La Rosa (04:43):

First, it manifested in a blood clot that was the length of my leg, it literally just went all the way up, and they didn’t know what was going on. It is really hard to diagnose because everybody’s lupus can manifest in very different ways. So a friend of mine was diagnosed five years ahead of me and she doesn’t have any of the symptoms that I have. And then I was diagnosed and I, again, have none of the similar symptoms.

Christine De La Rosa (05:09):

And I saw 22 doctors before I was diagnosed in 2010. I almost died from the pulmonary embolism because they had never seen a deep vein thrombosis in any of the studies that they did, but I had one because that’s what my blood does, it clots for no reason. It’s one of my lupus symptoms and that’s what hit my lungs. I remember it so clearly, I was on the 880 in Oakland and I just felt I was fine and then I was terrible. So I was really lucky to get to the hospital on time.

Christine De La Rosa (05:44):

In 2012, I started to get sicker and sicker and sicker and they couldn’t figure it out until they realized that I had pericarditis, so my lupus was attacking my heart and the sac that surrounds my heart with filling up with fluid. When you have pericarditis, when you sit up, your chest hurts, when you stand up, your chest hurts. There was no place and no situation where my chest didn’t hurt. And I had gone and gotten an EKG at the hospital and they were just like, “Hmm, this is really weird.”

Christine De La Rosa (06:16):

I was in so much pain that there was a time where I’d been up for probably five days and was sitting at the table with my head over, like at the dining table. And on that morning, at 3:00 AM, I remember thinking to myself, “Death would actually be better than this. I get it now, because I would prefer to be dead than to be in this pain.” Never in my entire life had I ever contemplated suicide. I had never thought of it, it’d never been part of my radar. And I called my mother and I said, “Mom, you have to come.” I said, “There’s something really wrong,” I said, “because I just really had my first thought of suicide.” And my mom was on a plane the next day, and she got to me that day. And sometimes you need an advocate for you when you’re that sick.

Ellen Lee Scanlon (07:01):

Christine’s mental health continued to deteriorate as her symptoms got worse.

Christine De La Rosa (07:06):

I remember a second time when my mother came up to take care of me because I was super sick. She walked into my house and I hadn’t cleaned my house, I hadn’t paid my bills, I hadn’t done anything. And I am a person that pays their bills on time, ahead of time, auto pay, like I’m that person, my house is clean, and it was like a pig sty. And my mother walked in from flying from Texas and she was like, “What is going on here?” And I just said, “Oh, I don’t have to worry about any of this,” and she’s like, “What do you mean?” I said, “Well, I’m going to die soon, so why do I care if I’ve paid my bills? Why do I care if I’ve paid my mortgage? Why do I care if the house is clean? I don’t care about any of that, I’m dying soon.”

Christine De La Rosa (07:44):

And so, I was very sure that I was dying soon. I was ready to die. I’ve been sick for three years and nothing that I’m doing is getting me better, none of the 11 doctors are helping me, none of this Lyrica, gabapentin, Plaquenil is helping me. There were so many side effects. It was like insomnia, and unable to eat, and vomiting, which I know is gross but it’s the truth, having one pill interact with another pill in a way that I would be doubled over in pain from having issues with my intestines, it was just so many things. And it was so crazy to me because I’m like, “These are supposed to be making me feel better. And although they might be fixing one thing, they’re making six other things wrong with me.”

Ellen Lee Scanlon (08:27):

And Christine had tried a lot of medication. She was on 11 pills a day, five of which were opioids.

Christine De La Rosa (08:34):

In early 2015, I started really to try to focus on holistic medicine because I had been now sick for five years and had not at all gotten better, but only proceeded to get worse and less ambulatory and less existing in the world.

Ellen Lee Scanlon (08:52):

A friend invited her to a cannabis conference, which inspired her to get her medical cannabis card. Christine shares the story of the first time she bought legal cannabis in episode 60 of How to Do the Pot.

Ellen Lee Scanlon (09:05):

Sandra Guynes, the kush nurse, gives her patients specific instructions when they decide to transition from prescription medicine to cannabis for the first time.

Sandra Guynes (09:13):

It’s always, “Let’s start with the least crucial ones.” If you’re taking something for sleep, let’s work on that one. If you’re taking something for pain, let’s start there. Because we know that the endocannabinoid system, we know this works for sleep, we know it works with pain, so let’s work on those factors first and then kind of wean it down, what other ones we can taper off of.

Sandra Guynes (09:35):

For most autoimmune conditions, many of them, they may take pain medication at night, but usually they’re not taking many medications at night. I usually try to get them to try it at night so that way they can see how their body responds to cannabis.

Ellen Lee Scanlon (09:49):

Christine intuitively tried this approach when she began her journey with medical cannabis.

Christine De La Rosa (09:54):

I immediately realized, because I was a nicotine smoker for many years, for about 25 years of my life, since I was very young, and I had quit smoking, it was too much like smoking cigarettes and it made me want to smoke cigarettes. So that’s when I started to move to the tinctures, to the gel caps, to the edibles, right? And I started to feel better. And I said, “Well, what if I took away this Lyrica?” The second month, I took away two medications, I think it was the gabapentin and the tramadol that they had me on. And I just did that every month, and I would check and see like, “Do I see that I’m declining because I’m not taking the synthetic medication? Do I see something that’s shifting in my body? And can I replace it with more cannabis, more CBD to counteract that?”

Christine De La Rosa (10:44):

And so that’s just what I did for nine months, and I literally took them out one or two every couple of weeks until I was to zero. I did not stop the Benlysta treatments, which were the infusion treatments. I went at the hospital until I got rid of all of the medications. So that was the nine month mark, is when I stopped. I went to see all 11 doctors, the hematologist, the neurologist, the cardiologist, and every one of them were like, “Oh my God, you look so great,” because I wasn’t walking with a cane, I wasn’t hunched over, I didn’t have this really sickly pallor.

Ellen Lee Scanlon (11:15):

Talking to your doctor about cannabis can be complicated, especially if you don’t live in a legal state. Dr. Chin also suffers from a rare autoimmune disease, so she understands this from the perspective of a patient and a physician.

Dr. June Chin (11:28):

I think a major challenge for any woman looking to incorporate cannabis and CBD into their health routines to treat a chronic or even acute condition is speaking about it to a healthcare provider. Because if you’re on prescription medications, it’s crucial to find reliable, medically responsible guidance around cannabis use. Because when you’re supplementing with cannabinoids, it can interact with meds and make their side effects more powerful.

Dr. June Chin (11:56):

So it’s challenging to find a physician, and then it’s challenging to bring up the subject with your current physician because you don’t want to, quote, unquote, “taint your relationship” if they have some sort of cultural bias with cannabis. And the problem with just female health in general, health practitioners routinely minimize women’s experience of pain and insomnia and sexual dysfunction, even pelvic pain. So a lot of these complaints are often dismissed as having a psychological rather than a physiological condition. A lot of women, and even myself, you go undiagnosed for years, years, despite multiple trips to doctors and specialists, all the while being told that their symptoms could be stress related.

Dr. June Chin (12:40):

So then if you bring up cannabis and they think that, okay, so now your experience of pain, quote, unquote, “pain”, and now you’re asking for cannabis, they think it’s a psychological issue.

Ellen Lee Scanlon (12:52):

Christine still sees 11 doctors a year for her lupus and she offers her advice for talking to medical professionals.

Christine De La Rosa (12:58):

The first and foremost thing for any woman is to understand that the doctors work for you. We are constantly as women being told that our instincts, how our bodies are feeling, is not really what’s going on, and we’re told that a lot of times by doctors. And what I’ve really learned in this process for myself… And I used to be that person. If my doctor said, “You need to put these fentanyl patches on,” I was like, “All right, let me put these fentanyl patches on,” even though I can’t function, because a doctor said it. And if you cannot speak to them about what’s working for your body or they’re not willing to hear you when you’re telling them that cannabis is working for your body, you really do have to find another doctor, no matter how much you like them or how much you feel like they’ve helped you in the past. We have to advocate for ourselves, and if the people that we’re going to to help our bodies to maintain our health are not able to hear of alternative ways to do that, then they’re not part of your team.

Christine De La Rosa (13:56):

I know for me, as a woman, many times I’ve placated. I’ve been like, “Well, they’re the doctor,” and I’ve learned to not do that. I’ve learned to be like, “It’s my body. I know how I feel. I know what works and makes me feel better. And if you can’t get on board with that, then I cannot be your patient anymore.” And in order to have that conversation, you really have to disabuse yourself of the fact that they know more about how you’re feeling in your body.

Ellen Lee Scanlon (14:26):

I believe you can never have too many favorite podcasts. But with so many to choose from, I also know that finding the right shows to add to your rotation can require some legwork. So we started How to Do the Pot’s Podcast Club, where every so often we’ll share some really great podcasts that we think you’ll like too. If you feel like reciprocating with podcasts you think we might enjoy, please reach out at hi@dothepod.com, or you can DM us @DoThePot.

Ellen Lee Scanlon (15:00):

Ethnically Ambiguous is a podcast about the immigrant minority experience, but in a fun way. So what does that mean? Your hosts, Iranian-American Anna and Syrian-American Shereen, walk you through being a modern Middle Easterner in today’s climate. They discuss growing up with immigrant parents and also tell you stories from history that will help you make sense of all the news coming out of the Middle East.

Ellen Lee Scanlon (15:28):

Currently, they have on guests who are either immigrants or people of color to discuss their experience coming to or growing up in America. Some of the topics they cover: Discovering sexuality with immigrant families, being raised as an outsider, stereotypes about Middle Easterners that may or may not be true, interviews with other minorities in the entertainment industry, and representation in television and film, historical reporting on the Middle East, and more.

Ellen Lee Scanlon (16:00):

New episodes come out every Monday, making your Mondays a little better, and the show is produced by iHeartRadio. Listen and subscribe on the iHeartRadio app, Apple podcasts, or wherever you get your podcasts.

Ellen Lee Scanlon (16:18):

Christine’s systematic approach and positive results were a surprise to her doctors too.

Christine De La Rosa (16:23):

They’re like, “What are you doing?” And I remember being so proud to say, “Taking none of the medications you prescribed for me.” And they all wanted to know like, “Well, what are you doing?” I was like, “It’s cannabis.” And I had a couple, like my lupus doctor, who’s a rheumatologist, he’s really famous on top of this, he was very skeptical. But as the time progressed, he became very much an advocate for me. And my primary care physician immediately signed on, and he started sending me his patients that were on opioids for a multitude of reasons to try to help them with cannabis, and I saw a lot of patients back then. Of course, telling them that I’m not a medical professional, but here’s how I figured out what my regimen was.

Christine De La Rosa (17:01):

So I think that, really, that was such a turning point for me because it allowed me to function in the world in ways that I hadn’t been functioning for five years. And I can’t tell you how much I can’t wait till it’s not a trial and error, when we are legalized and we can do huge, massive studies to figure out how we get to people off opioids, off synthetic medication, because we know better, as opposed to me doing it over nine months, trial and error.

Ellen Lee Scanlon (17:34):

And how is Christine’s health on an all cannabis regimen?

Christine De La Rosa (17:37):

I haven’t had another clotting incident. I haven’t had another pericarditis incident. And when I have gone into flares, they’re like 20% of the flares I used to get prior to cannabis use. I still have flares, I will always have lupus. I will always have lupus. And I want to make sure that I’m so clear for people that cannabis is not the solution, it’s not a cure, at least for lupus. It’s just such a better life to know that when I go into a flare, I’m not going to be at a 10, I’m going to be at a one.

Christine De La Rosa (18:09):

Cannabis is such an important holistic medicine, not only for physical pain and physical inflammation but also for the mental pain that you go through if you’re an ill person. Without a doubt, I have to tell you that cannabis definitely shifted that mindset for me when I started to use it on a regular basis, on a daily basis.

Ellen Lee Scanlon (18:29):

Sandra Guynes sees this mental boost in her patients consuming cannabis for lupus and other autoimmune conditions.

Sandra Guynes (18:35):

They’re excited, they’re feeling better, they’re more mobile, they’re able to do more things, they’re able to eat. People who are in pain often don’t sleep well, they don’t eat well. When we can manage the endocannabinoid system, when we can manage these autoimmune conditions, it’s generally going to increase this person’s quality of life long-term. We’re seeing that it builds a confidence in them that they can do more of the things that they desire to do, and that’s the biggest win for patients who have autoimmune conditions.

Ellen Lee Scanlon (19:08):

Medical cannabis consists of both CBD and THC. CBD is legal and available in all 50 states, and THC is available in states with medical and adult use cannabis. Dr. Chin has some guidance for trying cannabis with THC to treat symptoms.

Dr. June Chin (19:24):

Well, because of our estrogen levels, females are very sensitive to THC. Estrogen and THC sort of amplify each other, so I always guide women in starting with CBD, and then you can slowly add the THC, like a milligram at a time. Every three days, you can titrate up until you get your desired effect.

Ellen Lee Scanlon (19:41):

What cannabis medicine works best for Christine?

Christine De La Rosa (19:44):

I love CBD. I’m not that interested in getting high to be honest, but I really love CBD for the inflammation that my body is constantly in, but I could not exist without THC. Because for me, the indica in a THC is the thing that allows my body to relax, to sleep, to be regenerative in that sleep. Because when you’re in pain, and anybody who’s in pain constantly from a chronic illness or chronic pain, you know that even when you go to sleep, you don’t actually go to sleep because your brain is constantly processing that your body is in pain.

Ellen Lee Scanlon (20:21):

For women with chronic pain, finding the right method of consumption may require some experimenting and making your own cannabis medicine.

Sandra Guynes (20:29):

People with lupus have pain like 24 hours a day, and so you have to find something that’s going to last long. I have one lady she’s on butter, like she does butter on her toast, butter in her coffee, and it keeps her kind of like with a little pain management all day long. And she’s only doing like five milligram little tabs of butter here and there, but it’s keeping her all day, kind of giving her what she needs to be able to still keep moving and stuff.

Ellen Lee Scanlon (21:01):

We also get a lot of questions about drug interactions. Because cannabis remains a Schedule One drug in the US, studies are limited, but Sandra Guynes has a few more helpful tips to consider.

Sandra Guynes (21:12):

We don’t have enough information about every interaction. But if they’re doing oral medications, that’s when I’m most concerned about interactions because oral medications are metabolized in the liver, which means by the time you break it down, there could be other drugs inside metabolizing your liver as well. So if you’re taking a pharmaceutical and cannabis, they’re both kind of hanging out in there, being released. And so what happens with some people is the pharmaceutical medication can have more effects or less effects based on the cannabis being in there at the same time.

Sandra Guynes (21:44):

So what I usually tell people is two hours before or after, that’s when we recommend you take your cannabis, not alongside with your pharmaceutical medications. And the first time that they’re consuming, if it isn’t contraindicated in any way, make sure you’re not at work, you don’t have anything to do today, no responsibilities. We’re going to go slow and start low.

Sandra Guynes (22:04):

And the biggest thing is knowing like, “What are my symptoms? Do I feel like my medication is too much, or is this feeling too much?” And that working in conjunction with your awareness, and usually keeping a journal, which is very important, to know what your effects were, how much you took at that time, what time you took your other medications, what you ate…

Ellen Lee Scanlon (22:26):

If you’re ready to incorporate cannabis medicine, both Sandra Guynes, the kush nurse, and Dr. Chin believe it’s very helpful to keep a journal.

Dr. June Chin (22:33):

The journal is basically to train your own brain to organize when you take medicine and how you feel, that’s all it is. And you don’t need to do it all the time, but I think once you get into a habit of it, then your brain is sort of trained to think this way. But if you can figure out what time you take the cannabis, so the time of the day, how much, and then how that made you feel. And then you do that for a month, you could even do it on a good old fashioned calendar, you can see a pattern.

Ellen Lee Scanlon (23:08):

For today’s High Five, how to talk to your doctor about cannabis medicine. Number one, be prepared. Studies are limited in the US, but countries like Israel and Canada have promising research that you can share with your doctor. Dr. Chin’s website has a long list of recent research studies on medical cannabis and I’ll link to it in the show notes.

Ellen Lee Scanlon (23:29):

Number two, be clear. The kush nurse recommends being specific with your doctor. Instead of saying something like, “I want to try cannabis, what do you think?” Try starting the conversation with, for example, this: Before I tried cannabis, I felt this way. And then I tried cannabis, and it helped me to feel these positive effects. However, I’m still feeling symptoms that I don’t want and so I’d like to discontinue this medicine or taper it down with your support.

Ellen Lee Scanlon (23:55):

Number three, be open to a second opinion. As more states legalize cannabis, doctors are paying attention, but they may not be informed or culturally prepared to consider it as a treatment. Be willing to find another physician if you aren’t getting what you need to make an informed decision.

Ellen Lee Scanlon (24:12):

Number four, be aware of drug interactions. Medical experts recommend waiting two hours before consuming cannabis after taking your prescription medications. Try cannabis at night or when you know you have the time to adjust to any effects you may feel.

Ellen Lee Scanlon (24:27):

Number five, keep a journal. Track what you’re taking and when and how it makes you feel. Seeing patterns will help you learn what’s working for your body.

Ellen Lee Scanlon (24:41):

For lots more information and past episodes visit dothepot.com, and that’s also where you can sign up for our newsletter. And if you like How to Do the Pot, please rate and review us on Apple podcasts, it helps more people find the show. Thank you to our producers, Madi Fair and Nick Patri. I’m Ellen Scanlon, and stay tuned for more of How to Do the Pot.