Welcome to the site. I send you a big cyber hug as I along with a lot of others definitely understand what you are going through. I think that it is sad that you were misdiagnosed for so many years. I think that the doctors definitely need to become more educated about Lupus. My name is Kathy and I have SLE, Lupus and have had it for some 45 years. I just turned 50 last month. I went for years with no diagnoses and finally got a doctor right out of med school to listen to me and test me for Lupus. He diagnosed me and then sent me off to a Rheumatologist who confirmed the diagnoses and put me on medication.
Saysusie is right that you should not fear the Plaquenil. This medication is one of the top of the line medications for Lupus and it works wonderfully for most folks. I have been on it for years and I believe that if I were not on this medication, that I would not be here today. Please do consider taking this medication. Understand though that it takes up to 5 months to get the full benefit of the medication, but please do take it.
I am sorry to hear that your husband does not support you. My husband was like that for years and it turned out that he was scared to death and could not deal with it. He finally came around. You should maybe think about taking your husband with you to the doctor. That is what I had to resort to to get him to understand and live with this rotten nightmare called Lupus. I hope that you keep posting as we all care for and about you.
Lupus for many years. Like most of my life. Sjogrens that started at 35 and Scoliosis, Spinal Stenosis, Degenerative Disc Disease, Osteo-Arthritis of the spine, Ankylosing Spondilitis, Periferal Neuropathy, mild CP and now just recently diagnosed with PA. I had a disc replaced in December of 2007.
Plaquenil, Sulindac, Imuran, Celiac diet, Tramadol and B12 shot once a month.