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Discussion Starter #1
Since Jan, two docs told me that I had rosacea. Let me back up, I got very ill from a New Years party as did all of my friends. Doc gave me a rx for an antibiotic that was pennicillin based (which I have never had) and as I was running out of the rx, I got these blotches on my one cheek and both sideburns. The blotches didn't go away. The doc then says it's rosacea and gives me minocyclin and metrogel for three months. No help. It isn't worse, but it's still these itchy blotches that are warm to the touch. Sends me to a derm who says, yep rosacea...try tetracyclin and a diff cream. Three months no help. Sends me to another derm for patch testing, but they decide to do a biopsy instead. One week later, I go in to get my stitches out and they said it was discoid lupus. How can they tell that from such a short biopsy? I thought the lupus biopsy took 3 weeks.

Any advice?
 

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I'm not an expert on skin lupus problems, but a skin biopsy is how they usually diagnose discoid lupus and results can get back quickly. It's good they did the biopsy so that now you know what the real problem is and can get started on treatment that will really help.

Hopefully the doctors have given you some more information about discoid lupus, started some treatment, and warned you to stay out of the sun and use sunscreen religiously. Good luck to you and I hope someone else will come along shortly with some more advice for you and share their experience as well.
 

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Discussion Starter #3
They gave me a steroid cream to put on the blotches and panquil (sp?). Asked if I had questions, but I was in such shock my mind was blank. So, I don't really know much about it at all. If the blotches go away, do I have to keep taking the meds for life? I'm scared to death right now.
 

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Hello there :)

I hadn't answered before as I am far from an expert on discoid lupus but wanted to say "Please don't be scared".

If your only involvement is skin problems then they should clear up quickly with the cream and with plaquenil. Plaquenil can take a certain time to start working but I believe that time is significantly reduced for skin problems.

Plaquenil is a very safe drug, far safer than many OTC meds which we take without giving them a second thought. It is disease modifying and will help keep everything well under control. You may well have to take it for a long time, if not for life, but that really is far preferable to letting the disease be out of control. Hopefully it will wrk so well that it will ne the only med you need to take :)

sorry I can't help more. Hopefully someone who knows more about discoid will be here soon...

hugs :hug:
Katharine
 

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Welcome to the forum :)

It isn't very likely that a mistake has been made with the diagnosis if that is what you are wondering. I don't think there's any rule about how long lupus biopsies will take to be evaluated.
It's a great pity the dermatologists didn't think to give you a little bit more information and assurance at the time but you have found your way here which is the best thing that could have happened.

The Plaquenil is all that is needed in most cases to get the skin sorted out. You should see some results within a couple of months. When is your next appointment?
They should have done a CBC more specialised blood tests ( and urine) to see if there are any other signs of disease. They should also have questioned you about your general health and past problems. That is to make sure that the lupus is limited to the skin. So have a think about your general health. Sometimes the lupus is not SLE but there can still be a few symptoms like fatigue, joint aches anemia, or even slight lung problems. The Plaquenil woud help with those sort of symptoms as it is first line treatment for SLE too.

Sometimes discoid lesions are the first sign of systemic disease so it is important to know what the signs of worsening disease might be and to have regular tests. Plaquenil has an important role to play in modifying or inhibiting disease progression and reducing flares.

You will be unlucky if the Plaquenil doesn't bring great improvement in the skin so long as you are very careful about UV exposure. Look for an acceptable broad spectrum sun screen for both UVA and UVB and use it all the time. Winter and cloud do not reduce exposure all that much.

The steroid cream should be used very sparingly and not for long periods because it can damage the skin long term.
There's another antimalarial that can be added to it if you are in the UK or USA which almost always works if the Plaquenil isn't enough.

You will be extremely unlucky if the lupus does progress to a serious systemic form but even if it does, there are several effective medicines these days to get it under control.
Remember that almost all the people who post here have problems. All those who are living normal lives with their lupus well controlled rarely post on forums.

Take the view that it's lucky you got diagnosed fairly quickly. The longer it goes without treatment the harder it is to get rid of. You might not need to be on the Plaquenil for the rest of your life although you will always have to watch out for the sun. But many people take it life long without any ill effects.

If the tests I mentioned above were not done then get them done at the earliest opportunity.

Do you remember what antibiotic you took in January? If you need antibiotics in future avoid the sulfonamide types if possible, and minocycline.

I hope this information has reassured you. If you need any additional help, just ask. Keep in touch and let us know how you get on :)

Good luck !

Clare
 

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Hi there,
just wanted to say welcome.
Sorry you are having a difficut time but you have come to the right place for great support and info.

Hope you feel better soon.

Cassie :)
 

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Discussion Starter #7
They did send me to the lab where they took 7 huge vials of blood and took a urine sample. I hope that I get those results as quickly as the biopsy. The blood work is to see if it is systemic. I haven't had any other symptoms that I can think of. As far as the antibiotics, the first one I was put on by the first doc to say it was rosacea was minocyclin. I really appreciate all of your help!
 
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