Someone just asked what a Lupus Flare feels like and I answered:
Here is what the tiny print says:
Imagine having the flu and then falling down a flight of stairs. Now imagine that the medicine you are taking to feel better makes your heart race, head ache and your emotions rage. Now imagine your doctor can’t help you and some people don’t believe you don’t feel well. Now add the responsibilities of life, the frustration of limitations on what you want to do and the guilt of having to have everyone in your life make concessions for you. Lupus is the worst..
What does it feel like for you? Post a comment or follow on Facebook and talk to me there!
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.
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.
In the Lupus
PS—in writing this blog post, I have taught my computer the word “Plaquenil.” Ugh.