Will I be put on meds for discoid lupus?

[rad123]

Hi everyone.

Can anyone tell me what will happen now that I have been diagnosed with discoid lupus? I have a lot of mild symptoms of SLE but my ANA test was negative. I was given Elocon cream and told to return to dermy in 6-8 weeks. I wasn't given anything for my other symptoms though. Feeling confused.

[kittykat68]

Not all dermys are the same, I have subcutaneous lupus so mines no scaring, I'd already had steroids and creams and my skin was still inflammed, so I had biopsy s taken and was given plaquinil then.. That was nearly 5 years ago, but I also have methotrexate as well as that seem to be the only med that controls my skin hope that's helped

[rad123 in reply to kittykat68]

Hi KittyKat68.

Thanks for the speedy reply and shedding some light.

I just don't understand why I wasn't given medication at the time. The Reg dealing with me Knew nothing about Lupus.

[tashi]

I was diagnosed with discoid first and put on hydroxychloroquine (been on for 3 years now) and mepacrine plus various lotions/creams for scalp/face. I had to come off mepacrine after quite a while as it affected my liver. Within a few months of being diagnosed with DLE by dermatologist, my blood counts went a bit wild so I was referred to rheumy... tests later confirmed I have SLE too. My list of drugs has grown and I still see both consultants as trying to keep flare-ups under control. The time between appointments always feels like ages when you're anxious about symptoms but please remember the meds typically take 4-6 weeks to have any effect.

Rad123 as my lovely GP says you're on the radar now, so meds/symptoms will be monitored - just remember to tell them everything at your appointments.

[rad123 in reply to tashi]

Hi Tashi.

thanks for replying. I feel like I've been thrown a bombshell and told to come back in 2 months. No medication, even though I told her I have got many symptoms of SLE. She didn't even ask what they are! Just kept getting the sympathy look. Very confused.

[Paul_Howard Partner LUPUS UK]

Hi rad123,

It's not really possible to give a prognosis for you because lupus is so variable. It is quite likely that you may be started on an anti-malarial such as Hydroxychloroquine as these can be quite effective in treating discoid lupus and mild SLE. If you've only had one ANA test so far, they are probably going to want to repeat the tests.

If you think it would be helpful I could send you one of our free information packs about discoid lupus and SLE? Just send me a private message or email [e-mail] with your name and address.

[rad123 in reply to Paul_Howard]

Thanks Paul.

I have sent you a PM

[Winz]

Hi

I've had acute discoid lupus over 20yrs now and the secret is managing it. You will probably have good spells where little or no medication is required and when you have a flare you'll introduce medication. I've found best one for me us Plaquenil.

Try not to stress about it and monitor when you have a flare if there are triggers which you may find out as you go along.

Good luck!

Liz

[rad123]

thankyou liz.

I think I am still in panic mode

regards, Rhona

[LatinZest]

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