There’s always something new…

RA doesn’t just affect joints.  It can affect the lungs, kidneys, pancreas, and so on – all the body’s systems.  That’s a problem with a systemic disease.

Although I had thought my disease was fairly well controlled, it turns out that even though my joints seem to be okay, and my labs look fantastic, there’s hidden inflammation wreaking havoc internally.  In my ongoing learn-A&P-by-malfunction life-course, I now get to learn all about pericarditis.

Pericard-itis is exactly what it sounds like it would be: inflammation of the pericardium.  And if you’ve ever taken Greek (thank you, Dr. Pecota), the pericardium is exactly what it sounds like it might be:  peri is a preposition meaning around, and cardion means heart, so the pericardium means something around the heart.  Thus pericarditis is inflammation of the thin, double-walled sac that surrounds the heart.  And let me tell you, it hurts!

There are many potential causes of pericarditis, and one is autoimmune diseases like RA.  Other causes include infection, heart attack/surgery, cancer, chest injury, HIV, and TB.  But with RA/SLE/PsA as a risk factor, this is something that the autoimmune community really ought to know more about.

The main symptom is chest pain.  This is most commonly sharp, stabbing pain – particularly in the center.  If you’re atypical like me, it could be more of a dull ache.  Think of your entire sternum hurting.  If you have a history of costochondritis (inflammation of the joints where the ribs attach to the sternum), you might be tempted to dismiss pericarditis symptoms as a costochondritis flare.  We’re talking about chest pain, though.  Go see your doctor!

Other symptoms can include:

• Fatigue
• Shortness of breath or difficulty breathing
• Coughing
• Palpitations
• Fever
• Pain when swallowing

It’s important to know the symptoms and seek help when warranted.  Don’t blow this off as a minor flare.  When we have chest pain, we need an accurate diagnosis and a good treatment plan!

Easier said than done.  I ignored things for a couple weeks, until finally my family members were concerned and insisted that I see our doctor.  Now, I like my doctor, but am not looking for extra excuses to see him.  I tend to figure that if I ignore things long enough, they’ll get better on their own.  After all, the body has a remarkable ability to heal itself!  Nonetheless, to get family members off my back, I went to see my doctor.  He is usually pretty good at the MD’s poker face. Nothing fazes him.  But when we discussed the “what makes it better/worse” question and I told him that it helps to lean forward, he looked at me like I’d lost my mind.  I smiled, “What can I say?  I just report the symptoms. You get to figure out what they mean.”  As it turns out, it’s pretty well documented that sitting up and leaning forward can ease the chest pain associated with pericarditis.  Once the doctors gave a name to my symptoms and I was able to read about it, I exclaimed, “HA! I’m not crazy!”  Well, maybe I am, but not about this!

Tests

When you see your doctor for chest pain, tests will be done.  Lots of tests.  Doctors don’t like their patients dying, so take complaints of chest pain quite seriously.  Even if you insist that it’s not your heart, it’s your lungs, they will ignore you and focus on your heart.  Expect to have an electrocardiogram (ECG/EKG) done almost immediately.  This not only tells the doctor what your heart is doing at that moment, but can show evidence of a past heart attack.¹

Stethoscopes are a great invention.  In the case of pericarditis, the layers of the pericardium can rub against one another, and doctors are often able to hear this rubbing.  It’s fascinating.  Painful, but fascinating.

Another test, but one that can’t be done in a lot of primary care offices, is an echocardiogram (echo). This is an ultrasound of the heart, and in addition to an ECG is one of the tests that can be used in diagnosing pericarditis.  Positive results are considered conclusive, however negative results are not.

A chest x-ray can show what’s going on with your lungs, and will also show if the heart is enlarged.

MRI can be done to check the thickness of the pericardium, but is not likely to be one of the tests ordered initially.

Labs might also be ordered.  This is especially true if you go to the ER from your doctor’s office.  They’ll completely ignore your pcp’s input and order a plethora of tests to measure inflammation and make sure you’re not having a heart attack.²

Types

• Acute pericarditis appears suddenly and lasts fewer than three weeks.
• Incessant pericarditis is continuous and usually lasts 4-6 weeks, but definitely less than 3 months.
• Recurrent pericarditis is when symptoms of acute pericarditis resolve completely, the patient is symptom-free, and then 4-6 weeks later the symptoms occur again.
• Chronic pericarditis lasts longer than 3 months.

The Art of Medicine

Eventually I saw a cardiologist.  He’s a fantastic guy.  He read the history my family doctor sent, listened to my story, did an exam, and read the ECG.  Tired of waiting for the ultra-slow wifi to work, he said, “Let’s do this the old fashioned way,” and retrieved a couple tomes from his office – including one that he said used to be the Bible of cardiology.  It was kinda neat to watch him look things up just to confirm he was remembering things accurately, and he showed me in his books what it says about RA and pericarditis. Then he told me that he’d check up-to-date once he had a better internet connection.

After that, he showed me my ECG and explained that the machine was reading it as normal, but that’s not how he read it.  And he carefully showed me the exact places on all those wiggly lines that he thinks look like my readings are abnormal, as if I were able to read ECG’s.  I can’t, but he made it sound fascinating, didn’t treat me like an idiot, and I’m tempted to get a book to see if I can pick up the basics of reading ECG’s.

Medicine isn’t just feeding data into a computer that turns around and spits out a diagnosis and treatment plan.  There’s an art to listening to patients, asking the right questions to get all the assorted symptoms that the patient didn’t even think to mention, and putting everything together.  Then after determining a diagnosis, doctors still need to figure out a treatment plan.  Every patient is different.

Treatment

Since this is inflammation, it makes sense that anti-inflammatories would be the first line of treatment.  But RA patients already know to take ibuprofen before bothering their doctors with a little inflammation, which means my cardiologist jumped directly to the next step.

Colchicine is a gout medicine that works to reduce inflammation, and is one of the most common pericarditis treatments.  My insurance has this as a Tier II med, so be forewarned.  The most common side effect is needing frequent trips to the bathroom with lots of TP and air freshener, but if you’re already taking something like sulfasalazine, that is unlikely to be a problem 🙂

Steroids can also be prescribed to reduce the inflammation.  It’s nice to know there are options if the colchicine doesn’t work.  Frankly, given the cost difference, my personal preference would be to deal with prednisone, but there’s the usual love/hate issue when that medicine is prescribed.

Here’s hoping your life is less eventful!

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¹ If the ECG’s automated results say “inferior infarct, age undetermined” do not panic. It might mean that you had a small heart attack at some time in the past, but it also might mean that the machine isn’t particularly reliable and your results should be interpreted by a skilled cardiologist who will say, “don’t worry; you’re fine.”  If the doctor says, “Don’t worry; the machine doesn’t know what it’s talking about,” believe the doctor.

² If you go to the ER from your doctor’s office, they’ll repeat the ECG and also draw blood to run every test possible in an effort to discover whether or not you’re having a heart attack.  When they announce that you’re not having a heart attack, feel free to respond, “Nobody ever thought I was having a heart attack. I am here because my doctor told me to come here for an echocardiogram because none of the cardiologists can see me sooner than two weeks.”  Better yet, it might be appropriate to be proactive at the very beginning of the visit and insist that they enter “sent by pcp for an echo” as your chief complaint, or they’ll get it all wrong and think that you’re there for chest pain.  To tell the truth, the ER is a horrible experience and if I’m ever sent again, I will take with me the name of the ER doctor with whom my pcp spoke.  And if it’s the height of flu season, beg to be sent anywhere else.

Technology as health tools

I thought that being an RA patient was a full-time job.  If so, then taking care of an aging parent qualifies not just for overtime, but for double-time! It is exhausting, which hasn’t been so good for my RA.  Fortunately, I’ve learned a few things that have actually helped me improve my own health.  My brothers are assisting with mom, and between us all we’ve done a few things that have helped my mom to be in better health now than she has been in at least a decade.  Two of those things we’ve done might be helpful for RA patients, too.  Technology is great.

The first thing we did involved gadgets.  We got Mom a Fitbit Charge2 (and an iPhone). There’s some interesting research showing that use of a pedometer can ease RA fatigue, so we might all want to make ourselves get up and get moving. If all you want is a pedometer, spend $5 at WalMart.  The fitbit does so much more than count your steps, though.  This is a pretty neat little gadget. It’s a wristwatch. It’s an exercise tracker. There’s a setting that will make the thing vibrate every hour if you haven’t taken at least 250 steps (but not at night), so you get a gentle reminder to get up and get moving (which I need).  I knew that with my RA diagnosis I’d learned to conserve steps, but didn’t realize quite how sedentary I’d gotten until I started looking at my step-counts. You can set a goal for how many steps you want to take each day, and when you reach your goal, the fitbit congratulates you 🙂  Adding in an app to sync the fitbit with your phone makes it easy to set exercise goals, sleep goals, and even track how much water you drink each day.

The next thing we did was take a look at mom’s glucose readings.  (skip this paragraph if you don’t care about diabetes) There have been problems with mom’s medicare-approved glucose meter, the most significant being that mom’s anemia is severe enough that the meter often gives errors instead of reporting results.  Nearly as important, imo, is that the black numbers on a grey background are nearly impossible for her to read. Why Medicare pays for something that’s basically useless, I don’t know.  We found a solution! We bought a meter that is able to give results in spite of the anemia, and which has a white background and extra-large numbers so that mom can read the display. This solves both problems. (OneTouch Verio, if you’re in need of a good glucose meter.)  What we’re really liking is that this meter syncs with the OneTouch Reveal app on mom’s phone, so there is an easily-viewed record of all mom’s glucose readings.  We showed her doctor at the last appointment, and the doctor loved it. My brothers and I also put the app on our phones and logged into mom’s account, then set reminders to check mom’s glucose readings about 10 minutes after her meal times.  It’s nice to see those numbers and know that mom’s okay. Before switching to this meter, we’d asked her to text us every time she tested, which she found a little more cumbersome than she wanted to deal with. Now she just tests like normal, and we can see her numbers. The way the report is set up, it’s easy to look at it and see patterns.  “Gee, mom, you’re always high at lunch time; maybe you should consider changing what you eat for breakfast.” We’re finding the right balance between, “You’re an adult; do what you want,” and “Given your family’s life expectancy, you probably have another 20-25 years; controlling your glucose will have a significant impact on what those years are like, so you might want to get this under control.” If her numbers are high, then my brother texts, “What did you eat?!” and that helps her be mindful of her diet. If she doesn’t post something, or if her reading is low, I contact her to make sure she’s vertical and not in need of assistance.  Never again will she nearly die because nobody knew she was sick.

The final thing we did that seems to be helping mom tremendously, and is helping my brothers and me lose weight, too, is set up a free MyFitnessPal account. We all set up accounts and friended one another so we can help mom keep track of what she’s eating and how that affects her glucose levels. I know that the fitbit app allows tracking of what you eat, but we’ve found MFP to be easier to use.  It also displays the info we want (and it syncs with the fitbit so the data is both places).  We did the math to help mom figure out how much protein and how many carbs she should be eating (and did the same for ourselves). We named the meals with that information because she was having a tendency to forget, so, for example, her meal names are:

• 7:30 am: Breakfast (32g carb, 15g protein)
• Noon: Lunch (32g carb, 15g protein)
• 4:30 pm: Dinner (32g carb, 15g protein)
• 7:30 pm: Bedtime snack (32g carb, 15g protein)

Combining these three things (three apps on our phones) has made it really easy for mom to see the correlation between what she eats, how much she moves, and what happens to her glucose. She thought she was controlling what she ate, but seeing exact protein:carb numbers has been extremely helpful. She got her A1c down to 7.0 ! It helps me, too, because I can do a virtual check on my mom at any time.  Honestly, it was exhausting when I had to drive to her house every.single.day.  Getting mom to really get things under control with the help of these tools (apps) has made my fatigue level decrease 🙂  If you have diabetes, or are caring for someone with diabetes, maybe these things can help you, too.

As for RA, I find these apps quite useful in a couple different ways.  First, using MyFitnessPal makes it easier to keep macronutrients in the right proportions, which means that I have to eliminate foods that provoke inflammation, so my disease is better controlled. As a bonus, eating the right proportion of macronutrients means that I don’t get hungry between meals so am not tempted to snack.  Second, the “friends” aspect of MyFitnessPal means that others in my family can see what I eat, which inspires me to make choices that I won’t be ashamed to have them see :).  Finally, getting a fitbit has me moving way more than I used to. Although it seems counter-intuitive, the extra activity actually decreases fatigue.

I’m looking forward to browsing the iMedicalApps site to see what other helpful tools might be out there!

Keeping Busy Despite RA

RA meds work!  True, they don’t cure the disease, but they’re designed to slow down progression and make it possible to have a life.  I’d have to say that my life is a testament to how well my meds are working.

A big thank-you to Health Line for honoring my blog while I was busy proving that RA meds can be effective, and congratulations to my fellow-bloggers also named.

 Before diagnosis, I remember having to limit myself to three errands a day. Two was even better.  Best was to stay home and not do anything.  Everything hurt, and I was just too exhausted to do anything.  Nothing could be done before 8 a.m., and I had to be back home by noon because my energy for the day was gone by then.

In contrast, now I’m able to go out and do things  — many things.  For example, between them, my two boys have had ten baseball games and two track meets in the past week.  After schoolwork in the mornings, we leave the house around 1:30 (way past noon), drop one son off for practice, drop the other off for his practice, stop at the store if needed, go home and make/pack dinner, then go back to pick up boys from afternoon practice (or watch & cheer if it’s a game/meet day). On baseball game days (most days, it seems), drive to evening games, some of which are an hour away, and cheer some more.  Thanks to RA meds, I can do more than three things in one day, and can be gone from the house past noon.  Honestly, my entire family’s life would be very different without biologics, because that’s what it took to get me to this point.

That doesn’t mean that I’m pain-free, or that there aren’t rough days, but things are manageable.

High school basketball begins in early November, as do practices and tournaments for my younger son’s select basketball team. Middle school basketball begins the first week in February, so the select team ends their season (thankfully we stop – some teams go year-round).  Then high school basketball ends a week later.  High schoolers have a week off before baseball turnouts, then games start the first week of March. Youth league baseball practices also start practicing in mid-February, so kids are doing both basketball and baseball.  Basketball season is over at the end of March, then track begins in April (right after school), as do youth baseball games (in the evenings and on weekends). The high school baseball season ends the first week of May, then American Legion teams start the next day. Unless the high school team makes playoffs, in which case kids are playing on two teams. Track ends the first week of June, but high school’s summer basketball program starts, so we’re still juggling three teams.  Baseball runs into July, but this year the coaches are trying to ensure that people have a break, so we’ll get most of a month off between the end of summer ball and the start of fall ball.  Fall baseball practices for both boys begin in August, with games running through October.  Then it starts all over again.

Sports weren’t like this when I was a kid (back when dinosaurs roamed the earth). Sports had distinct seasons, and coaches didn’t make kids feel like they couldn’t make the regular season team if they didn’t also participate in extended stuff.  The best I can do is juggle, try to teach about having some balance, and support my kids in pursuing their dreams.

But I can!  The way I felt before starting on a biologic, there is no way my sons would be able to play sports because I wouldn’t be able to transport them.  I can only imagine what family life must have been like for RA patients before biologics came out.

Plus, we still have cows, horses, alpacas, and ducks to feed.  Meals need to be cooked, laundry needs to be washed, and it’s nice to vacuum the floor every now and again.

My two sports-minded sons aren’t the only kids in this family.

• My oldest just completed his junior year of college. He is currently in Greece.  A group of students have spent the past year studying Greek history (3 history credits), as well as physical setting of the Bible (3 Biblical Literature credits), and are now travelling in Greece to see the places they’ve been learning about.  Once he returns, he has an internship set up (same place he worked last summer).
• My older daughter is a college sophomore, and is taking time for some real-world experience before finishing her degree.  She is fundraising, and leaves soon for a six-month trip that begins with 12-weeks of training, followed by hands-on medical missions work.  They’ll start out at a clinic in Kolkata, then head either to southeast Asia, Africa, or Nepal (depending on needs at the time).  In addition to earning money for her trip, she’s doing all the pre-trip things one needs to do like get travel vaccines, find a good-quality backpack she can live out of while she’s gone, learn about the places she’ll be going, renew her passport, apply for visas…
• My younger daughter is nearly done with her high school work and took two dual-credit courses this year.  She just registered for classes at her first-choice college, so is doing all the college prep activities that 18 year olds do.

Life is busy!  I am so thankful that I have been able to keep up with my kids’ activities!