Four months has gone by and the day before yesterday it was time to catch up with my cardiologist. Seems I didn’t write about my first appointment. He took a thorough history, ran a treadmill stress test and examined my heart via ultrasound as I recovered. He had to abandon the stress test early, because my blood pressure spiked too high. I also became very breathless and was slow to recover. I have noticed that I can’t exercise to the same level that I used to, not from a joint pain perspective, but a lack of fitness.
There were no dangerous abnormalities, just some stark indicators of heart disease. I have an exaggerated blood pressure response to exercise, which is a significant indicator of cardiac mortality. He was quick to point out that my heart is working fine right now, but getting my blood pressure lower and keeping it there is my most important health priority.
To that end, you guessed it, I must get off prednisone.
He prescribed medication to lower my blood pressure, the dose of which has since been doubled and another medication added, and now my blood pressure is usually normal. I have, however, failed to get off prednisone.
At my first appointment, he suspected small vessel disease of the heart, because I have small vessel disease of the brain. MRIs of my brain confirm this, but there is no definitive test for diagnosing small vessel disease of the heart, or Coronary Microvascular Disease (CMD).
Similarly to the brain, Coronary Microvascular Disease is coronary heart disease of the tiny coronary blood vessels that branch off from the major coronary arteries. In Coronary Heart Disease, the major arteries become blocked with plaque, which can reduce blood flow or cause a complete blockage. In Microvascular Disease, there is no plaque, but damage to the inner walls of the tiny arteries lead to spasms and decreased blood flow to the heart causing pain (Microvascular Angina) and reduced blood supply to the heart (ischemia) and cause damage to the heart muscle.
Coronary Microvascular Disease is more common in women, particularly younger woman. Risk factors include Diabetes, Polycystic Ovarian Disease (PCOS), high blood pressure and a family history of cardiomyopathy (diseases of the heart muscle that weaken the heart). I have high blood pressure and PCOS, and Rheumatoid Arthritis increases the risk of heart disease as well.
Considering all of this, there is no need for more invasive tests, like a cardiac angiogram, which is sometimes performed to confirm the diagnosis. Often the angiogram is normal, anyway. He said there’s no need to put me through that, for which I’m grateful.
He diagnosed Microvascular Angina, which is essentially chest pain caused by the spasms and reduced blood flow in these tiny heart arteries. I used to experience chest pain occasionally, now it is an almost a daily occurrence. Usually at night and at times of emotional stress. Sometimes with exercise.
Typical Angina only lasts a few minutes but Microvascular Angina can continue for 30 minutes or more. My episodes frequently last more than an hour, and it literally feels like someone has reached into my chest and is squeezing my heart. As it progresses, it feels like someone is sitting on my chest and I can’t get enough air. I have had a few episodes that were severe, and included pain radiating to my jaw and shoulder, severe nausea and cold sweats. THOSE are the worst times, because it feels like I’m having a heart attack. It’s reassuring to know that these attacks aren’t doing damage, but the difficulty is in knowing when to call an ambulance. Angina raises heart attack risk. My cardiologist said take it seriously if there is nausea, vomiting, severe pain, cold sweats and a feeling of impending doom. And when in doubt call an ambulance or get to the ER. Better to waste someone’s time and live.
I explained my hesitance to go to the ER, due to some of my previous experiences, being treated like a drug seeker and essentially left in a room for 12 hours and ignored. He said they have to take any chest pain seriously, and to explain I have been diagnosed with Coronary Microvascular Disease, and to call him if necessary.
I’m still left unsure as to when the pain is bad enough to warrant an ambulance. Hopefully I won’t face that problem again.
Fatigue is a big symptom, and has gotten worse over the last few months, and my stamina levels have dropped radically. He suggested this was due to my heart not getting enough oxygen.
Treatment is ongoing and preventative. Control blood pressure, control cholesterol and control blood sugar. All the things that prednisone elevates. All of these are well controlled now, but need to be monitored closely. And he reiterated again that I need to get off prednisone, because prednisone makes these risk factors harder to control. I am increasing the likelihood of a major cardiac event the longer I stay on prednisone. CMD increases the risk of a future heart attack significantly, and prednisone adds to that risk.
I told him I was tapering, and explained what happened last time I tapered. He told me when I get to that point I need to go to the ER, and have them examine me and admit me if necessary.
He discussed managing stress levels. He is my only doctor who thinks my oxycodone use is appropriate. Severe pain causes stress, which increases my heart rate and blood pressure. Not good for my heart. Oxycodone by far the lessor of evils in his opinion.
After my first consult he rang my GP to discuss my personal circumstances, and find out what supports I had in place. He asked how my son was, and how we were managing his moods and Asperger’s. He asked about my daughter’s anxiety. He asked how my relationship was with my ex-husband, and if I had family nearby. And he asked me if I felt supported, if I had people I could rely on. He was aware of my psychologist, and he recommended I keep seeing him. And he told me I needed to take better care of myself. That he could see my sadness in my eyes, and that being that sad is not good for my heart.
Not the usual things that come out of a doctor’s mouth! But he’s a very holistic practitioner, as well as a highly educated cardiologist.
I haven’t felt so cared about in a very long time.
When I think about it, he told me all the same things my neurologist did. Small vessel disease, no specific treatment, can only manage the risk factors (blood pressure, blood sugar and cholesterol) to prevent strokes/heart attacks, see a psychologist, get exercise, make healthy lifestyle choices, but his approach could not have been more different. I was his last appointment for the day, and he made no move to rush me out of there.
He also asked if my rheumatologist had followed up on the letter he sent her. I said not to my knowledge. He printed me another copy and asked me to make an appointment with her to discuss what he’d written. He said it was important, and not to be ignored. I started to put it in my bag and he said ‘No, I want you to read it. The last paragraph.’
Doctors usually do not want me to read what they’ve written. He wanted to make sure I understood the importance of his recommendations, and the seriousness of his suspicions. He tried to get his colleague, my previous rheumatologist, to take on my case, but couldn’t convince him. He did consult on my records however and suggested I should be worked up from the beginning. He questioned Rheumatoid Arthritis being my most concerning diagnosis, and referred to the systemic nature of my disease, and rampant inflammation throughout my body. He strongly suspects Cerebral Vasculitis, and/or systemic autoimmune vasculitis, which is being masked by my prednisone use, and asked my rheumatologist to investigate further and manage the situation.
Funnily enough, my first neurologist came to the exact same conclusion. When I brought up cerebral vasculitis with my rheumatologist, she said no way, however.
My cardiologist told me to make another appointment in about six weeks with my Rheumatologist. Give the Xeljanz time to work, and get my prednisone dose lower. And then ask her to run the tests he suggested. I really can’t imagine she is going to listen to me, given our relationship of late.
On the upside, currently my heart is working fine. He gave me an EKG which was normal. My physical exam was good, but he did note some swelling in my lower legs. He explained that fluid build-up in the lower legs can be a sign of heart failure, but he wasn’t concerned. I’m a long, long way from there. Just something to note and be aware of. A lot of swelling would be a warning sign not to ignore.
He recommended that I keep exercising and try to include more cardiovascular exercise. I am no longer very fit. I walk on a treadmill when I can walk, and ride a spin bike or do light weights. He recommended building up my cardiovascular fitness and exercising my heart more. I most often can’t work at the required intensity, but he reassured me not only is working out intensely safe, but it is highly recommended for my heart health. Just build up slowly.
So I will do more spin classes, and there is a 30 minute cardio class at my gym that I don’t often get to. Time I made that a priority. As often as my joint pain will allow. He understood how hard it is to do cardiovascular exercise with rheumatoid arthritis, and was understanding. But firm. It’s important.
He also checked my weight and found I’ve lost just under 10kgs since my last appointment. I thought my track pants were a bit looser! He was pleased as being a healthy weight helps, but only if I am maintaining muscle mass and strength. Weight loss from muscle wastage (cachexia) is a sign of out of control disease.
He also advised I start taking L-Arginine, an amino acid supplement used extensively in the U.S. but not widely yet in Australia. It can prevent fatty deposits forming in arteries, prevent blood clots, and prevent constriction of the blood vessels. I have to buy it online and he gave me his email address and told me to send him a picture when I had received it, and he will advise the appropriate dose.
And that’s about it. He doesn’t need to see me regularly, but he emphasized that if I was worried about anything, anything at all, if my symptoms changed, or the pain worsened, to just make an appointment and come see him. Otherwise, a yearly check is fine.
His parting words to me were to look after myself more, and he said he really wanted to see me healthy…and happy.