Tracking Lupus from Both Sides of the Stethoscope

I was surfing Facebook this morning and I came upon a posted video from Lupus Foundation of America (LFA) called:

LFA-Real(tm) System is First-of-its-Kind Tool to Monitor Disease Activity

This caught my attention because this is more than a tool for physicians. The system has two parts:

  • A doctor’s assessment of a patient’s lupus disease activity.
  • A patient’s assessment of their lupus disease activity.

The idea is that the assessment on both sides of the stethoscope can be done quickly–and it can track disease over time.

I have had two experiences with tracking and assessment, and to be honest friends, they have kept me from going to the doctor for a couple of months now.

When I discovered a symptom tracker called Symple, which allowed me to track my daily symptoms and also the factors that might cause them (lack of sleep, vitamins, stress, etc.) I was elated. I tracked faithfully every day for more than a month. When I met with my rheumatologist, I showed her my data, explained the app in three sentences or less and offered to email the report Symple created from my tracking. She could not have cared less. She barely glanced at the screen. That was the end of the story. I was crestfallen because I thought this was awesome. In my 20 minute office visit, I can’t convey all of the pain and suffering over a month, three months, six months. And if I could I am CERTAIN it would sound worse than I want it to. The app, however is an honest, accurate assessment over the course of many days. This body of data takes into account the good and the bad days, and what is influencing them.My doctor didn’t see it that way. I don’t feel understood. I feel prescribed to. You can check out Symple by clicking here. And by the way, it is free.

Not too long ago I got really sick in a weird, Lupus sort of way. I had stomach problems, I was achy and miserable. I knew I didn’t have the flu. I suffered for a while and then out of nowhere I got hives. This is my Lupus nemesis. I spent years suffering from hives and sinus infections before I was diagnosed. It was awful. Once I was diagnosed and I started taking Plaquenil, the hives went away completely–for years and years. Until that day. I decided to go to see my primary care physician–in case it was the flu or something. I got a doctor filling in for mine and she was great. She listened. She was informative, she ordered a TON of blood work. A week later, when it all came back normal. I talked with her about it. I was still feeling miserable and my legs were covered in hives and here she was saying: all your blood work is normal.

As a lupus patient, this is something I struggle with. I want an actionable answer at all times. And you know what, there isn’t always an action to take.

Oh I'm sorry. Did it look like I zoned out?  I was just picking out a wall to bang my head on.

Oh I’m sorry. Did it look like I zoned out? I was just picking out a wall to bang my head on.

I said thank you to the doctor and said, “I guess there is nothing left to say–I feel miserable, but according to my blood work, I am totally fine.” She stopped me there by saying: “No. You have Lupus. It doesn’t mean you aren’t experiencing symptoms.”  I am sure I sat there staring at her for a moment as I imagined repeatedly banging my head against a wall. That was my last visit. I have no plan to go back to either doctor unless something awful befalls me, because seriously, what is the point?  What is to be gained? Other than massive medical bills and more frustration (which leads to more symptoms).

Maybe LFA-Real will make a difference in this. If they can track what is a flare and what is a chronic symptom from a patient and match that with a physician’s observations and the test data?  I am skeptical, but hopeful.

This is in the beginning stages, like just about everything with Lupus, but the system is free and open to use for everyone (Thanks, LFA).  This System, which includes the development of the tools used to assess, and lots of input from patients and professionals alike, will be unveiled this year and you can watch the video by clicking here.

Keeping an Eye on Plaquenil

I really like my eyes. I don’t mean their shade or their shape, or their outstanding ability to bat eyelashes or convey emotion. I mean my actual eyes and their magnificent way of letting me experience the world. It’s because of this love that I am always a little extra concerned about taking Plaquenil to treat Lupus.

Plaquenil was the first and for a long time the only drug used to manage Lupus. As I understand it, it is what stands in the way of my condition progressing to more serious organ involvement. It is an important tool in the fight against Lupus, but using it does not come without risk. Over the course of time, Plaquenil can become toxic and damage the retina. If it is unmonitored, it can leave vision impaired, or even cause blindness.  I would like to keep my eyes functioning as long as possible. I am not sure what my quality of life would be like if I had, say,  a healthy liver and no eyesight. I would prefer not to find out.


Jeepers Creepers, this is a mighty close look at my peepers.

Right after I was diagnosed, my (super fantastic) dermatologist sent me to the pharmacy to pick up Plaquenil and to an ophthalmologist for a visual field test. I was armed with a note for the ophthalmologist written on a prescription pad. It said: Ask her about her diagnosis story. Its good.

Within five minutes of handing that note over to the ophthalmologist, I learned that she too has Lupus. We did that thing that people with Lupus do when they meet: Do you have…?  Have you ever taken…?  What do you think about…? Right after that, I learned that she doesn’t take any medication to manage her condition. As soon as that left her mouth, she tried to grab it back. She even told me a cautionary tale about a woman she went to medical school with who also didn’t take any management drugs for Lupus and so she died at 30 (sidebar: I have a host of stories people have told me about Lupus over the years that can be summed up with: “it was awful and she died.” People are really thoughtful.). What her concern boiled down to was masking symptoms rather than treating the disease. However, dealing with symptoms is all we can do, at least for now.

Which brings me back to Plaquenil. Have you heard that there are new guidelines for dosing it?  I was surprised to learn that the dosage should be based on ideal weight for a person’s height—not their actual weight. For me, this means I am taking more than I should be taking according to the new dosing.  I am not sure about you, but prednisone, Plaquenil’s Lupus-treating bedfellow, can swing my weight tens of pounds before I can blink, so having dosages not tied to actual current weight is good news. It simplifies things; or at least it should, once I talk to my doctor about it.

You might be thinking: “Look, In The Lupus lady, you should just trust your doctor to dispense appropriate medication.”  If I heard you saying that, I would think that you either don’t have Lupus (or another tricky autoimmune disease), or you have one outstanding medical team.  Either way, good for you!  For the rest of us trudging through this achy maze, the need to share information on experiences and diagnosis and treatment. I offer up what I find to you (and your doctor) because part of having a disease that is a mystery is some responsibility to educate people—even our physicians.

Of course, once we learn something new, the first thing to do is to discuss with your rheumatologist before making any changes so you can make a plan. Part of that plan should be reminding our ophthalmologists that Plaquenil is toxic and should be monitored.

For your consideration, and discussion with your doctor, the new recommended dosage is no more than 6.5 mg/kg/day, using the standard known as “ideal weight,” which factors in height. For women, the ideal weight is 100 lbs for 5 feet, plus five lbs per extra inch of height. For men it is only slightly higher at 110 lbs for 5 feet, plus five lbs per extra inch of height. Currently, the average dose of Plaquenil is 200 mg. twice a day.

You can read the source documents about the new Plaquenil dosing guidelines for yourself by clicking here.

You can also see what other Lupus bloggers are saying about Plaquenil and vision here: One outstanding Lupus blogger tells all about her Electroretinography, or ERG. An advanced test that measures retinal changes and health. This is especially important for people on Plaquenil. In case you are squeamish, I will warn you in advance, there are pictures. Visit, Despite Lupus to read more.

When you’re done reading, get your vision tested by a specialist, talk to your doctor about the new dosing guidelines.

Be well.

In the Lupus

PS—in writing this blog post, I have taught my computer the word “Plaquenil.” Ugh.

3 Days Until the Steroids are Over & Life Can Begin Anew

They'll be back...but hopefully not too soon.

They’ll be back…but hopefully not too soon.

Plans! I had such PLANS! It was going to be great. This blog–in the–isn’t that a great name? I picked a theme and a look (and I was not quick about it) and I decided that it would be two things:

1. Honest about what it is like for me to live with Lupus.

2. In The will be what it sounds like–a place to stay in the loop about what is happening with in the world of Lupus–from research to fundraising and every single thing in between.

Unfortunately, before I could get it all together and– abracadabra–make it a great site, Lupus struck me down. Hard.