1.) Today my doctor has prescribed me Plaquenil. This is the only med he prescribed me. Is it normal to be on only one medication? Are there any others I should ask about? Will this medication help my symptoms, particularly the fatigue, pain, and easy exhaustion?
Plaquenil is a disease suppressant, and takes 2-3 months to build up in your system. It's supposed to stop disease progression. For most of us, we don't notice that it's doing anything until we try to stop it - although some people do notice improvements while on it. Often other meds are used in addition, such as Prednisone for inflammation (inflammation can cause fatigue), then either immuno-suppressants lilke Cellcept, Imuran, or MTX for more systemic symptoms. It's hit-n-miss which of these 3 will work for any individual patient. If none of those does the trick, there is IV Benylsta - I think there is another IV med as well.
In general, I don't recommend asking about
specific meds until you've given the Dr time to offer them. That is, "I'm still having xyz symptoms, what can we do?" Then if the response doesn't include any meds, you might ask about
Sometimes the exhaustion is because we aren't getting "deep restorative sleep". You Dr may suggest a sleep study. When mine found nothing wrong, my Dr gave me a sleep aid, which of course I thought was NUTS, I was already sleeping 12+ hours a day, plus napping! And I thought I was sleeping well. But with the addition of Trazodone, I actually sleep more deeply for a shorter amount of time and feel much better.
2.) I read online that garlic, red meat, and alfalfa should be avoided if you have Lupus. Is this true? Has anyone experienced benefits from avoiding these, or consequences from NOT avoiding them?
I've been eating plenty of garlic and red meat all along without incident. Don't eat legumes because 1) I hate them and 2) it's suggested that Lupus patients have physical allergies to them.
Check out "The Lupus Book: A Guide for Patients and Their Families"
, by Dr. Daniel Wallace. The book is often referred to informally as "the Lupus Bible" by patients and Drs alike. He is the premier SLE expert in the USA, and has also written a version for Clinicians. I believe he's written something about
Sjogren's Syndrome as well.
3.) My doctor said that my Lupus "wasn't the kind that is attacking my organs, but is very symptomatic". Does this mean the Lupus will likely never attack my organs? Like I won't need to worry about Chemotherapy, kidney transplants, immunosuppressant treatment, etc?
Lupus, unfortunately, is NOT a predicable disease -- it can do anything at any time without rhyme or reason. Some of our meds are technically chemo, but not at the huge doses used with cancer. Don't let your worry get ahead of yourself, no sense in wasting energy on things that may never happen.
4.) Are there any lifestyle changes I should make to ease symptoms and keep them minimized long term? Are there any vitamins, supplements, or herbal remedies that are good for Lupus symptoms or maintenance (living with Lupus)?
Again, check out Dr Wallace's book. Otherwise, I suggest eating healthy - avoid processed carbs & sugars, focus on clean protein, fruits, veggies. Regular mild exercise, regular sleep/wake times. Avoid stress as much as possible - it's a terrible trigger for Lupus.
Keep in touch!
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2000DIAGNOSING LUPUS & HW's LUPUS 101
"Life is far too important to be taken seriously." - Oscar Wilde