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An_245519 posted:
was diagnosed with lupus at about the age 13. My symptoms were the butterfly rash over my cheeks and nose, the sores on my lips and inside my mouth due to sensitivity to sun, the aches of joints, anemia,.. Now that i am 29 and suffer from very few symptoms other then the very mild sores on lips the aches of joints, headaches and now hair loss which worries me.. I am very concerned because my specialist is no longer able to work and my new specialist said i may have been misdiagnosed but had no records of my background,, soo should i get retested for the lupus or follow a different avenue??
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nickle051 responded:
I've just recently have had the same problem. I was dx'd with lupus in 1993 after being really sick for those 3 years with the aches and pains and the fatigue. I was dx'd through a skin biopsy and was told that I had SLE without major organ involvement. I finally started treatment with plaqunil for about 5yrs. for the fatigue and joint pain. Well now it's almost 20yrs. later. The dematologist lost the biopsy results, the rhummatologist lost it and I moved 500 miles away and I lost my copy. Went to a new rhemmatologist because I was having other medical problems and I wanted to find out if lupus is playing a hand in it too. I never had any blood markers for the lupus at all and I still don't because she retested me. So she doesn't believe that I have lupus, so if I need treatment for it I won't be able to get it. Like now having lots of pain issues in my joints. I don't know whether it's lupus, or osteoarthitis, or my Ulcerated Colitis. I also was dx'd with Hashimotoes years ago and was hypo-thyroid for 10 year until I came down with Graves Diease over 2yrs ago. I am so thankful at least my bloodwork shows up with that. I may just get another biospy in the future but I don't really think it matters. I'm being seen by a pain mangement specialist now who I hope can help me regain some of my quality of life. Good luck to you this situation really stinks.
 
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nancyj95 responded:
Have had similar things happen recently, but with no doctor change (thank goodness). I have been diagnosed for about 15 years, but have had it probably since childhood in a mild form. About 6 months ago my rheumy's routine blood work came back with NO markers or elevation. I asked if it meant I didn't have it anymore and he just laughed. Tested a couple of weeks ago and of course all the positive markers were back. The doc blames the lab. I don't have dermatological problems except for small rash on chest and mouth sores, so have never had that biopsy, but my thyroid and liver are involved. Each one of us is so different, but we are one together. This group is a great one for support. I don't contribute often, but read it regularly. Hope things improve for you soon.
 
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R Swamy Venuturupalli, MD, FACR responded:
This is a tough question. I would try to obtain as many records as possible from your initial diagnosis. Specifically, ANA testing, skin biopsies etc, might be helpful. Even if your tests are not positive at the present time, it does not rule out lupus. If the current doc does not believe it is lupus, he should have an alternate diagnosis that explains your symptoms in mind.
 
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R Swamy Venuturupalli, MD, FACR responded:
This is a tough question. I would try to obtain as many records as possible from your initial diagnosis. Specifically, ANA testing, skin biopsies etc, might be helpful. Even if your tests are not positive at the present time, it does not rule out lupus. If the current doc does not believe it is lupus, he should have an alternate diagnosis that explains your symptoms in mind.


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Dr. R. Swamy Venuturupalli is a board-certified rheumatologist practicing in Los Angeles. He is Clinical Chief of the Division of Rheumatology at Ce...More

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