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Posted by @mahammond in Skin Health, Mar 4, 2012

I'm interested in hearing from other people with lupus.

Tags: Skin Conditions, Autoimmune diseases


Posted by @terryblink, Mar 4, 2012

Hi there. Being treated for lupus here.


Posted by @mahammond, Mar 4, 2012

What symptoms and lab tests led to you diagnosis? I have positive ANA, poor GFR, hives, and rash on face that looks like butterfly rash but haven't yet been diagnosed with lupus--also muscle aches & fatigue. It seems there isn't any one test that confirms the dx. Don't know whether to go back to rheumatologist or a different specialist.


Posted by @terryblink, Mar 4, 2012

No positive ANA here. On paper, i just look like i have inflammatory n some sort of connective tissue disease. I get the rash, fatigue, fevers, joint pain. I would stick with the rheum. They are going to be your best bet. I have been dealing with this for 10 years, thinking i was a hypochondriac or something. Until you get much worse, some ppl just cant get a definitive diagnosis.
My rheum just knows itsvwhat it is, so shes treating me. All you can do is treat the symptoms anyway. Chances are, you have more than one immune disease going on and its just getting all jumbled up with the symptoms. what meds are you on?
I wish you luck,i know how frustrating this is. Dont give up. Feel free to keep posting. Im here.

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Posted by Anonymous-92f3cbbb, Jul 3, 2012

Yes, keep going with a rheumatologist till you have a dx. It tooks me almost 4 years to get a dx. Now it had been 22 years since I got a dx, I have LupusScleroderma a real weird combination and recently dx with pulmonary hypertension too. But We have to be strong maybe no physical but mental helps.


Posted by @leaf, Mar 19, 2012

I have Lupus because every episode I have a red mask on my face that looks like I am going to a masquerade party


Posted by @betherann71, Mar 26, 2012

Hello. I've had my dx of lupus for 15.5 years now. For the first time ever, I now have the butterfly rash. I'm at a loss and I'm so not feeling positive about the latest addition to my list of issues. Treatment for the rash if any? I just want to go and hide!!


Posted by @amishcake, Mar 29, 2012

Just diagnosed in Jan. 2012. Lots of joint pain, retinal blockages over the last six years. Feeling like something was just "not right" last 2 years. Mouth sores, daily headaches, fatigue. Lots of doctors looking at me funny and scratching their heads, but finally now I know what the problem is. Taking methotrexate and folic acid for the last few weeks. Trying to stay positive.


Posted by @magpie, Jun 14, 2012

generally a +ANA nails it. muscle aches, weakness & fatige, shortness of breath, numbness and tingling in the hands and legs. bodywide tenderness, headaches, extreme dzzines, slight memory loss, my nerologist confirmed dx with extensive blood analysis. Dr. Kumar Shreveport, LA
Extremely intelligent, listening, and caring DR. Also accepts Medicare and Medicaid. And will gladly
supply all necessary documentation to any involved agency concerning this disibility


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Posted by @pinkstar, Aug 16, 2012

I have all those same actually the same thing, hard, my dr said. My Ana is rising and the doctor did test but didn't respond til I asked and she said I did have lupus help me

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Posted by @magpie, Jun 14, 2012

butterfy rash across face also good indicator to rhumatologist


Posted by @rebo, Oct 25, 2012

I have had Lupus since 2004. My hands were causing me pain and they did an ANA. At first it was not too bad, some soreness and rash. But I also have fibromyalgia so I got a lot more pain from that. I had positive ANA but then I also had 8 out of the 10 items that go along with Lupus. Right now I am in a Lupus flare and it is causing me depression. I do not feel like doing anything because I hurt. It has also had a turn-around. It is effecting my red platelets. They believe the when new platelets are made, lupus is attacking them thinking they are bad. So my blood counts are way off and almost to the point that they are going to do bone marrow just to make sure it is not leukemia and that it is Lupus for sure. It is really important to find the right doctor. I really like my doctor right now, she is a rheumy but specializes in Lupus. If I have something weird going on I can call and they will get me right in. And she listens to me. And works with me with the FMS. And she follows up with blood work and right now really watches my blood work. I have such muscle aches that I cannot pick up a pot of coffee. She did a bone density and that also had gotten worse. I have terrible fatigue. Some days I get up for about an hour and then go lay down and can sleep for another 2-3 hours. But I do not sleep well at night even with help with pills. My joints will lock on me and I wake up and then I am in a lot of pain for a while. But hang in there. I figure that is all I can do. I worry about my platelets right now. I am seeing a hematologist which she suggested and they are both keeping tabs on me.


Posted by @emtd, Nov 8, 2012

was diagnosed in 1997 after being made to think I was crazy, a hypochondriac. I was 30 yrs old at the time and had been "sick" all my life with this or that. So relieved when I was given my diagnoses. I have a slew of things which come along with Lupus SLE. I had to go on disability in 2001 after a partial hysterectomy, pissed off the Lupus and wound up on chemo. Understand you can test negative and still have all the symptoms which should be treated as if you tested positive. You can even have a positive ANA and be just fine. I, myself , have good and bad days. Worst part right now, migraines and syncope.


Posted by @tlw, Dec 3, 2012

I am experiencing the being treated like I am crazy now. It hurts my feelings and I ge more depressed by the day. I haven't had the diagnosis of Lupus yet. But, had a positive ANA test. I too had hysterectomy and I feel I never recovered from it. I had an awful time since. The doctor who has tested me for Lupus said the posititve ANA is not enough to diagnos althought I have the symptoms. I am very frustrated.


Posted by @navila78, Nov 11, 2012

na I also have lupus, since 1998. Have all the symptoms, fybromylagia, achy, tired, etc. Had MRSA (staff infection) in spine Nov 2012, don't know how I got it. Never had back surgery, do have chronic nose bleeds, so Dr's think the bacteria may have gotten into the blood stream and landed itself all along my spine. They couldn't get all out, because it was too close to the spinal cord, and they did not want to paralize me. Still haven't recovered from this, have constant backaches, difficulty breathing, tire easily. Currently on Methotrexate and 100 mg Lyrica, which masks the pain. As of last week, I now have been referred to a immunologist, as my IgA, G, and B are all out of sorts.


Posted by @callyrae, Nov 21, 2012

I was diagnosed by a biopsy of a skin lesion on my scalp that hadn't cleared up after several months. I had strange lesions all over my body and it was the oral flare up of lichen planus that took me to the dermatologist who did the biopsy. I couldn't believe it because I had felt better than I had felt in my entire adult life. In hindsight I realize that if I had been diagnosed earlier when I felt awful from rheumatoid arthritis and no treatments or meds had relieved it, I would have taken the lupus meds, curled up, and died. I felt hopeless, hurt all over, and didn't want to live. I was introduced to Juice Plus+ and my pain went away for the first time in 15 years. I started to understand the healing power of food and it changed my life. So a year and a half later (Feb 2010) when I received the dual diagnosis of overlap syndrome of Lupus and Lichen Planus from the skin biopsy I knew that this wasn't new (the LP was but I suspect I've had Lupus for at least 12 years) and that I could put it back in remission. Be careful of all the negative you find online. I want to spread a message of hope and healing. There is no cure but you certainly can live well managing your body. I have found that I have to have balance and it doesn't take much to throw it off but what I put in my mouth, my mind, and my heart absolutely makes me stronger or makes me weaker. You are the best advocate for your body!

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