Plaquenil

Keeping an Eye on Plaquenil

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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.

photo

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.

Good Day! Sunshine!

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Good Day Sunshine!

sunshineI was so happy not to wake up to dark grey skies and dreary, slushy rain. It was 27 degrees outside today, but the sun was out and I had the whole day off. I woke up singing, Good Day Sunshine! Click below so you can sing along too!

After the regular rigmarole of the morning routine, I headed out to the eye doctor (all clear on the Plaquenil retinal screening—hooray!) and then to the chiropractor (all popped and cracked back in alignment, three cheers!) and then I planned to go shopping for some new work clothes—I couldn’t put off buying black work pants any longer. I was driving and singing along with the radio for a little while when I realized I had a slight headache. Then my hands started to burn. All the sudden I was really, really tired. It always takes me a day or two to remember what happens when the sun shows up on the scene again each spring. Welcome back photo sensitivity.

The sun was the lead player in how I discovered I had Lupus. Of course, I had no idea at the time—nor did a slew of doctors and a pack of specialists or a host of tests.

I haven’t been able to put my hands on the pictures from that day. I took my younger brother to Six Flags with a bunch of friends and we spent the whole day in the beat-down, hot-as-it-gets-in-Western-New York sun.

Before that day I had never known a sunburn. My fair olive skin always gave way to a honey colored tan befitting my Southern Italian roots. From childhood, when I would sun worship my way through summer playing on our block or splashing in the pool, there was never a time when I shied away from a single ray.

Back to Six Flags. That was the first summer since I wore sleeveless tops since I was six or so. I think I am 32 there. My mother and I joked that this was just purely scandalous. She started calling me a Glory Girl (this has stuck). So I got a sun burn this day, which was novel to me. I was like, “Check this out—I think my skin is going to actually peel.” I was fascinated, a bit pink, and tired. Days past and the sun burn on my arms faded, except for that double thumbprint on my arm.

I wore the same shirt from the amusement park to work one day. From across the parking lot, my best friend shouted to me. laughing: “Do I need to rough up that husband of yours? Is he shaking you and leaving marks?” I was shocked for two reasons. One—the mark was still there and it was two weeks later, and two—it was noticeable from a fifty yards away. Still, I didn’t think enough of it to have it looked at. It was a bruise or something, right?

(to be continued)