Welcome to our family. I am sorry to hear that the Plaquenil has given you undesirable side effects. It can be a very effective drug for most Lupus patients. What other symptoms do you have with your SLE?
If you read through the forums, you will find that two of our members attended a Sjogren's conference recently and have posted notes about the conference here. The information is outstanding and may help you to understand and deal with that particular condition.
As Lupus patients, we are told to be wary of natural remedies. Many ingredients in natural remedies will actually aggravate Lupus and cause a flare-up. I am sure that you will find many, many testimonials about people "curing" their Lupus using natural remedies. Be aware that most of these have not been FDA approved, researched or tested by legitimate sources.
I understand your frustration with doctors and the fact that you cannot get straight answers. Do not put all of the blame on your doctors. Lupus is a frustrating disease, even to those in the medical field. The disease is not the same in any two persons, it does not follow any type of pattern, and it changes within the patient. Symptoms that you have today could disappear tomorrow only to be followed by a brand new set of symptoms. Also, lab work that is positive at one testing can be negative at the next. The disease also can develop slowly and its symptoms mimic so many other diseases. It is, therefore, difficult to diagnose and difficult for doctors to tell you exactly what is going on and/or what is going to happen. Living with this disease is like living with the unknown; we wait to see what it does and then try to treat, manage, and live with the options we are given!
Everyone here, however, is more than happy to help you in any way that we can and as much as we can. We all understand how heinous and frustrating this disease can be and how it can cause us to experience a myriad of emotions. We want you to know that you are not alone and that we care, we understand, and we are here for you.
Peace and Blessings
Look For The Good and Praise It!