Diagnosed with SLE Lupus

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Jon_sparky
New Member


Date Joined Jan 2015
Total Posts : 6
   Posted 1/18/2015 3:10 AM (GMT -6)   
Hello,
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...
Jon

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 1/18/2015 3:38 PM (GMT -6)   
Welcome to HW.
Having the flu on top of SLE is a bummer. I'm glad you found a good doctor who sound very through. The medication will help you start to feel better gradually. It will peak in about six months. I felt so much better at the sixth week mark after starting it.
I saw on the other thread you've already discovered coolibar, sungrubbies, and columbia. Don't forget a wide brim hat and sunglasses.
Joy
Lupus, RA, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, Depression, Allergies, and benign familia tremors

When life throws you lemons....
Pick them up and throw them right back at them! :))

Jon_sparky
New Member


Date Joined Jan 2015
Total Posts : 6
   Posted 1/18/2015 5:09 PM (GMT -6)   
Hi,
Well since it has been 7 months, probably as good as it is going to get... The relaxing muscles are a good sign,they are all huge knots.
Hoping I can get some relief from Pain Management, massage and trigger point injections.
I have been wearing sun protective clothes since my dermitoligist keeps cutting off stuff, I have to back for a few moles on my back. So I was already using sunscreen, but got more diligent after the Dx.
Found another UV clothing outlet,it is called "Triple J" just bought two more shirts...
SLE Lupus, hypothyroidism, Polyneuropathy, Skin Cancers, Osteoarthritis, and myfascial Pain syndrome.
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