So I've never been one to stray from doctor's orders - particularly when it comes to medication, supplements, or alternative treatments. Okay - yes - I've had my moments of weakness when it comes to taking those horse pills known as Calcium as religiously as I should, but on the whole, I consult my doctor and follow his lead when it comes to anything and everything regarding the treatment of lupus.
I even asked him about participating in a free acupuncture demo one time, which, interestingly, he requested I not try. (At the time, I was pretty sick...and I don't think he wanted me to complicate matters - but who knows? Being a traditional medicine guy, he might think the same today.)
So when the subject of supplements and natural remedies comes up, I don't have much to say. I've never tried any of the "cure-all's" that exist out there - noni juice, acai berry juice, licorice root, just to name a few - so I don't know if they have a positive effect or not. However, what I do believe, is that they will have some effect, and one needs to be prepared for that fact.
I've had several friends who have sworn by their remedies - and I'm so happy that they've found relief...but I have just as many friends who have tried these remedies, and suffered ill effects. In my opinion, that's simply because most anything you put in your body that's said to have some sort of healing/medicinal property is going to do something...if it didn't, it wouldn't stick around, would it?
So my only advice - supplements, natural remedies, and anything else that you experiment with aren't to be taken lightly. You never know what the effect is going to be - just be prepared for there to be one.
And, of course, I recommend consulting your doctor before trying anything. Whether or not they encourage you to move forward, you'll have brought them into the loop and kept them apprised of what you're up to. You may be surprised by their indifference, or they may have quite an opinion on the subject. Either way, you owe it to yourself to hear their side of the story. From my personal experience, if you're trying to keep something from the doctor, or attempting something on the sly, it's never a good thing!
Here are two articles found online (one from Sloan-Kettering, provided to me by a reader...thank you, Gale!, and one from Myasthenia Graves Foundation) that might be of interest. Neither discusses herbal remedies and lupus specifically, but I think both do a sufficient job of addressing the generic concerns involved in exploring alternative treatments.