Discoid lupus? Symptoms?

340 Views 3 Replies 4 Participants Last post by Clare.T, Jan 27, 2009

lmkast11

Discussion Starter · Jan 26, 2009

Hello,
I have been going to the doctor for many months and they cannot find out what is wrong with me...its been quite frustrating!

About 2 years ago I started getting these nasty sores on my body that do not go away quickly...sometimes last months. They were mostly on my back. I now get them on my back, chest, ears, face & scalp. The worst is the scalp ones b/c I now have many bald spots because of this!

Dermatologists tell me its acne (no way!) and I have undergone many many tests at the doctor. My ANA test came back 1:160. THey re-did it and it is unchanged. I am tired ALL the time, headaches ALL the time (just had a brain scan done & they found 2 white spots, no conclusion on those either). I also have joint pain (fingers) but they have done numerous blood tests and they can't find any swelling. I have had 20 different tests and everything is negative but the ANA.

I'm at my wit's end. I always feel sick and I feel like they are missing out on something huge. These sores are NOT normal. I was reading about discoid lupus and they sound similar. Does anyone else experience these and does anything help them? They are nasty little things...pus, bleed, & scab up constantly. And the scars are terrible...thick, dark skin. Nothing helps them...

Thanks for any help.

Lisa

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Maia

· #2 · Jan 27, 2009

It really does sound like discoid lupus, but the best if not only way to diagnose it is through a skin biopsy. It is probably time to ask for one of these to be done, possibly by a new dermatologist if you have lost faith in the one(s) you have seen before.

Discoid lupus can turn into or also present as systemic lupus, and given your other systemic symptoms of joint pain, fatigue, headache, and the positive ANA you may also want to ask for a referral to a rheumatologist. This doctor could order more blood tests or also send you for a skin biopsy with a dermatologist he/she knows well and knows about discoid lupus.

I think it's time to ask to see a rheumatologist (aka rheumy!) and hopefully you will really start getting some answers and some treatment that will help. Best wishes & I hope you'll keep us updated on how things go. And welcome!

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marymackay

· #3 · Jan 27, 2009

scalp problems

Hi Lisa

I am like you with the terrible scalp problems, also on forehead, under chin,face. It seemed to start 2005 when I was getting many symptoms, kidney, laryngitis, pneumonia, abdo pains, and being taken off dilantin after 20 years.

First gums were bleeding, bone erupting, pain, fever no doctor/dentist had explanation. End of year scalp started erupting. One said do this, another take this, another?? and one tried to laser off sore- pain. We had no dermyspecialists in area, and eventually saw one down south early 2007, who thought sores had subsided faintly though with blood tests and other symptomsetc thought I should be on Plaquenil, but took till Sep of 20 until I found rheumy down south who said lupuslike symptoms, gave me Plaquenil, it helped joints etc but not scalp.

Scalp worsened so went south to private dermy Jan2008 who said wanted me to have tests at dermy department at capital hospital. They did a lupus test puncture Feb, but had to fly down Mar for results- they said not lupus. I wrote to them and said you didn't check all skin as have skin cancers too.
Late last year the first visiting dermy arrived, and his tests said like you Lisa, acne.

Last weekflying down south a renal physician was interested in my case, saying need to see endocrinologist and neurologist, as I said I'm waiting to see vascular physician late March, and perhaps I could see dermy at that hospital too privately. It seems a long, expensive road to diagnosis.

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Clare.T

· #4 · Jan 27, 2009

Welcome to the forum Lisa
I am very sorry about your skin problems. Any skin condition that doesn't respond to treatment needs further investigation, but I am wondering what treatment you have been on for the supposed acne ? Some acne meds can cause drug induced lupus or even trigger clinical lupus, minocycline in particular.

Perhaps you can get to see a first rate dermatologist at a major teaching hospital ? We have several picture and information sites linked to in a sticky post at the top of the Symptoms section called The Skin and Lupus. Discoid lesions when fully formed have a typical distinctive appearance. It is really hard to tell from photos but who knows you might see some that very closely resemble yours.
of course a biopsy is essential unless it is perfectly obvious and even then one might be done.

The treatment for discoid lupus and also base treatment for lupus is an anti malarial drug called Plaquenil.

You might find tea tree oil very helpful for quick healing of open sores as a band aid approach. An ANA of 1:160 would be quite compatible with a discoid lupus diagnosis. Even people without any positive blood work can have a few other lupus symptoms like joint aches and pains.
Good luck
Please keep in touch and let us know how you get on

Clare

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