Posted 1/18/2015 1:10 AM (GMT -7)
I was diagnosed with SLE Lupus 7 months ago, getting 3 positives on the AVISE blood tests, two ANA and the antibody that attacks the kidneys. I have had muscle and joint pain for several years, along with chronic fatigue and FMS pain, which I had already been treated with for 10 years.
The first Rheumy I went to, refused to even test for FMS, saying it was a woman's disease, she Dx'd the pain as OA, after getting on x-ray of my hand, which did not show much OA damage. I had some older x-rays of my thoracic spine, that showed DDD and OA, so she just figured the pain in my hands, feet and knees were also OA related. She tried various NSAID prescriptions, but I couldn't tolerate them, along with Lyrica and Gabapentin. Finely settled on Celebrex at the maximum dosage 200mg twice a day.
This Rheumy who was old school, retired and refered me to my present Rheumy. Luckily for me, when I went in for the exam, she didn't have the old Rheumy's records, so she wasn't biased. She ran all the tests, to rule out other illnesses, and did the AVISE SLE Lupus plus connective tissue 2.0. This is the latest 2 tiered test, if you get a positive ANA, they take it to the next level, with DNA and antibodies tests.
The only test that came back positive was the Lupus tests. So I was started on Hydroxyclorequine, I was still trying Lyrica for Polyneuropathy pain, but had to discontinue. My Nuerologist tested me for small fiber neuropathy, everything came back negative, so he Dx'd it as secondary to SLE Lupus, and sent me packing...
Everything is going well with the anti malarial, my brain fog has decreased along with the blurred vision that I had for years. We are thinking they are lupus related too. I am taking Cymbalta for the nerve pain, it eliminates about 80% of the pain. I thought I was having side effects from it, trouble with urination, but the Rheumy thought it might be prostate cancer so I had to go to yet another doctor, a urologist. He gave me medication that caused me to almost go to ER for tachycardia and heart flutter, but I stabalized in the morning, and went off the drug.
I am now on antibiotics. The only thing I really took away from the hospital was the flu!
Well good to find a active forum for Lupus, as everyone around me, has no idea what I am going through. I am starting pain Managment in a couple of weeks, to deal with the back and neck pain. Hopefully the anti malarial will reverse some of the muscle pain. I have noticed the muscles in my neck and shoulders are relaxing more, for years they were alway constricted.
Sorry for the long winded thread, just sitting with the flu...