If you’re living with Rheumatoid Arthritis I’m sure you’ve heard about Glenn Frey dying from “complications from Rheumatoid Arthritis, Ulcerative colitis and Pneumonia.” I’ve personally already had several people tell me they were unaware you could die from Rheumatoid Arthritis. It’s difficult for people to imagine in this day and age that we don’t have a cure, and if you watch all the advertising for the medications they make it look like it’s the equivalent of having a lingering common cold. “Take this medicine, and you’ll be high kicking and running marathons in no time!”
Of course, everyone hears Rheumatoid Arthritis and thinks joints. For those with no experience with the disease, that is understandable. The disease name is misleading, since arthritis is so common and most people know someone with regular arthritis (Osetoarthritis). I could list all the things it can effect but I’ll just link on over to Wikipedia and you can look if you’re interested. Short version, it effects everything.
Rheumatoid Arthritis & Your Heart
So my journey with RA started in 2011. I was sick for 4 years before I got a firm diagnosis. It started with pain, fatigue, difficulty walking, weird skin issues. In 2013 I was working out and training to run a 5k. I had lost 65 lbs and was probably “the healthiest” I’d ever been in my adult life. After 6 weeks of training for a 5k I still could not get my breathing conditioned. Every time I ran, I felt like my chest had a ton of bricks on it and my blood pressure would bottom out. My rheumatologist (who was at the beginning of my rheumatic journey) wrote a referral to a cardiologist.
I went thinking it was nothing. I came out failing all tests. They did an EKG, an echo, and a stress test. My EKG was abnormal. When they did the stress test, my blood pressure bottomed out to 90/40 instead of going up like it should. I couldn’t breathe and had chest pains. My echo showed areas that were lacking oxygen to the heart. The heart doctor put me on nitroglycerin, a beta blocker and told me to stop working out. I was instructed that if I had a bad episode, to go to the ER. They scheduled me for a heart cath, thinking I had a blockage in one of my arteries. I was 33 years old. My family has a strong history of heart disease. Everyone on my mothers side has had heart disease or a heart attack. My father had a triple by pass at 52. So rightfully so, my husband and I were very worried.
The day of my first heart cath (yes I said first, I’ll get to my second later in this post) the doctor doing the heart catherization questioned why I was even there. “You are so young. Surely this is a mistake.” I told him why and he checked my records and away we went. Also noted, at this point I had no diagnosed autoimmune disorder. So this was just a weird little oddity.
Heart catherizations aren’t painful but they are stressful and weird. Once it was done, the doctor came in and said “Great news! You have no blockages. Everything looks great.” And that was that. I was sent home with no explanation as to why my blood pressure is always low and bottoming out. My heart doctor told me to stop my beta blockers and come back in 6 months.
We were not aware at the time that I was pregnant. I actually had the heart cath while I was about 6 weeks along with our youngest son. So once we found out I was pregnant we dropped the issue. We honestly chalked it up to a fluke. Probably just “a bad heart day” the day I was tested. I mean, they went INTO my heart and said it was fine. So we moved on.
Fast forward to 2015. I was diagnosed with Rheumatoid Arthritis in 2014 and after several months of Plaquenil and Methotrexate, my Rheumatologist thought it was time to try a biologic. I started Enbrel and almost immediately noticed that I was having extreme chest pain and heart palpitations. I couldn’t walk more than a few hundred feet without feeling completely winded. I brought up the side effect to my rheumy, thinking it was just the medication. He said he was concerned that we never really resolved my heart issues from 2013. He recommended that I just go back and have some more testing to see if the same problem was still going on. I went expecting to pass the tests and just change medications, believing it was an Embrel side effect.
Welllllll I failed everything. Again. Wash, rinse, repeat. Abnormal EKG, lack of oxygen to the heart on my echo, and stress test bottomed me out. The cardiologist puts me back on beta blockers and nitro and schedules another heart cath. My second in 3 years at 35 years old. Talk about messing with your head. Your heart is bad, not its fine, no its bad. I’ve had symptoms for YEARS. Dizziness, chest pain, heart palpitations. I always chalked it up to, well I’m not sure what. My motto was “It hasn’t killed me yet” and “They did a heart cath, my heart is fine!” Surely if there was something really wrong they would have found it.
I had my second heart cath and guess what? SPOILER ALERT. It came back normal. So now my husband and I are both pissed. Like, sure, great it’s fine, but something is causing me to fail all these tests regularly. Also, its not like I’m not symptomatic. I deal with symptoms from this all the time. Something is going on. My cardiologist is “pretty sure” it’s micro-vascular arteries in my heart not working properly due to my chronic high levels of inflammation from my RA. Good news, it’s not life threatening, yet. Bad news: There’s nothing they can do for micro-vascular heart issues.
My cardiologist and my rheumatologist refer me to Mayo Clinic cardiology team for a full work up. They want to be sure that there isn’t something bigger going on. I will detail my Mayo Clinic visit in September of 2015 on another post, but the short version is I get an official diagnosis of Cardiac Syndrome X, aka micro-vascular angina. My condition causes me to be at in increased risk of a heart attack and have chronic chest pain. Super fun!
Rheumatoid Arthritis is a big deal.
So this circles back to where we started. I’ve done a lot of reading on Rheumatoid Arthritis and the heart connection. Nothing makes me angrier then when people say “Oh at least it’s just RA” or “I have arthritis too” or “They’ve made such advancements in Rheumatoid Arthritis” mostly because of this piece of information right here from The Oxford Rheumatology Journal:
“Early death (in RA patients) was most often due to cardiovascular disease or interstitial pulmonary fibrosis, although other vascular and respiratory causes were also over-represented. Cardiovascular disease accounted for 31% of all deaths while pulmonary problems (including respiratory infection and lung cancer) were responsible for almost 29%. Ischaemic heart disease (IHD) accounted for a quarter of all deaths. It was also the most common cause of death at a young age and had a worse prognosis than in patients without RA.”
If you have Rheumatoid Arthritis (or any other inflammatory or autoimmune disorder) and have any heart symptoms, please don’t blow it off. Push your doctor. Get a thorough workup. Our bodies are fighting insane levels of inflammation daily. This puts stress on all our organs, not just our joints. Age does not discriminate. I didn’t write this to scare you, but to motivate you to be aware of symptoms of heart disease, especially if you have a family history of it.
The most common symptom of coronary artery disease is angina, or chest pain. Angina can be described as a discomfort, heaviness, pressure, aching, burning, fullness, squeezing, or painful feeling in your chest. It can be mistaken for indigestion or heartburn. Angina may also be felt in the shoulders, arms, neck, throat, jaw, or back.
Other symptoms of coronary artery disease include:
- Shortness of breath
- Palpitations (irregular heart beats, or a “flip-flop” feeling in your chest)
- A faster heartbeat
- Weakness or dizziness
Research is making great strides in Rheumatoid Arthritis and hopefully we will have a cure or a magic pill someday in the near future. I am hopeful, but the reality is a Mayo Clinic study confirmed a strong link between rheumatoid arthritis and congestive heart failure. You can read more on this study here.
In short, things aren’t as promising as the pharma commercials want you to believe:
“When you look at persons with rheumatoid arthritis, they do not seem to have experienced the benefits over the last several decades of improved survival the rest of us have,” said study co-author Dr. Sherine E. Gabriel, a professor of medicine and epidemiology at the Mayo Clinic in Rochester, Minn.
The findings, based on a large population sample of mostly white Minnesotans, showed that women and men diagnosed with rheumatoid arthritis between 1965 and 2000 died at a steady rate of 2.4 percent and 2.5 percent per year, respectively.
During the same period of time, annual death rates declined for men and women without rheumatoid arthritis. The rate fell from 1 percent per year for women in 1965 to 0.20 percent in 2000, and for men it dropped from 1.2 percent to 0.30 percent. “Source: Mayo Clinic via ABC News.
Be proactive. Listen to your gut (and your heart). If something doesn’t feel normal or right, push until you get an answer you are comfortable with. We want you and your heart around as long as possible. <3