As luck would have it, I was able to get an appointment at the John's Hopkins Lupus Clinic for this week, which I have off from school. I saw and was accepted as a patient by Dr. Michelle Petri, arguably the USA's best lupus practitioner. I learned a few things that I thought were interesting, so I thought I'd share. Here is a list, in no particular order:
1. If, like me, you have neuropathic pain (as in the case of fibromyalgia, or any other syndrome where your nerves are simply going bonkers), narcotic painkillers may actually worsen the pain. She suggested doing Tai Chi to help alleviate the pain and stiffness, although I'm more of a yoga girl myself.
2. Lupus patients should avoid, among other things, alfalfa sprouts (I happened to know that one already), and garlic. Odd, but there you have it.
3. Caffeine is the number one trigger for migraines. I was *not* happy to learn that I have to switch to decaf. Not happy at all.
4. Plaquinel, even if it doesn't seem to do any good, should be taken by any lupus patient who can tolerate it. I'm now part of a study designed to show that it reduces flares, kidney disease and neurologic complications. Basically, Dr. Petri thinks that any patient who can tolerate it should be on it for life.
5. As a white female, I have a 50% chance of developing lupus kidney disease (lupus nephritis). Dr. Petri didn't tell me the rates for other races, presumably because they don't apply to me directly.
All in all, I was pretty impressed. Dr. Petri (her name is very appropriate, no?) is a down-to-earth, nice lady. She makes herself available to her patients through email, and will send a copy of her medical notes of each visit to the patient after each visit. I elected to enroll in two studies, being a scientist, but she made it perfectly clear that she would not think any less of me if I chose not to do so. I did, however, decline to give permission to have my session taped for learning purposes. For now the advice is to add plaquinel to the 14 or so other medications I'm on, and stay the course with the methotrexate and the Benlysta. She also has a couple theories about why I'm dropping weight so fast, and made it clear that she would be interacting with me via email before my next appointment.