Discoid Lupus

Hi Tanya, 

I have had discoid lupus for 7 yeas now diagnosed in 2007. I have been on several medicines, plaquenil, mepacrine, protopil ointment (pretty weak,) steroid cream (very active but burns the skin smooth ( a thin application is needed) am only using steroid creams now but it seems not to stop new ones from showing up. It just burns and flattens the sore where you apply it to. Plaquenil, i was allergic to it in terms of acne. i had very strange rough face so i stopped it. mepacrine create slight jaundice (yellow eyes). I have started to notice sores on my scalp newly. The idea is to eat well and do lots of excercises. ad that slows down the disease. but flares often come right and its about targetting and tackling it. i would say the oral drugs should be limited to short times as they have huge side effects. for instance some of them may affect the blood cells count so one of the reasons to go for regular tests when you are using plaquenil.

please share your thoughts , lets keep this thread going. i have sores on my scalp now and from today i will apply steroid on the lesions to target control it. I also have mouth ulcers that come and go. finger sores as well. Keep fingers warm and mouth warm as well like brushing with mild toothpaste and warm water rinse. wearing gloves in cold season really helped. 

I was diagnosed with discoid lupus 12 years ago.at that time I had Discoid lesions on my face, chest, and back. I had been using several different strengths of steroid creams and plaquenil since diagnosis. This regime kept my lupus under control except for occasional flare-ups that happened mainly during summer months. Steroid injections would help at these times. over the years my Plaquenil has been increased from 200 milligrams to 400 milligrams, although 400 milligrams is toxic for my weight of a hundred and ten pounds due to increasing amounts  of discoid lesions and addition of malar rashes that are  now taking over my entire face, are inside my ears and nose and scalp. During the last year the steroids nor plaquenil are controlling my lupus. Therefore my dermatologist just started me on methotrexate, MTX, which is a chemotherapy medication.

After 12 years of taking plaquenil, I have no damage to my eyes. And I really never noticed any side effects from Plaquenil however I always took it at bedtime.

I have discoid lupus I found out in 2011 and I'm on placquniel. Mine has got worse stress n the sun will cause flare ups mine last for about two months the creams never helped me but steroids do help

I just got diagnosed with discoid lupus in early Feb I started steroids 2 weeks ago I see my hair growing back a little but my face looks as if it getting worst I smoke cigarettes and being trying to stop but with stress and work it's hard... I don't know what to do should I just weight it out and see what happens when I complete the prednisone and I also take hydrochlorquine 2x daily and the weight gain has begun already.. I don't sleep alas much because I can't I was thinking about going to see my Dr so I can at least sleep 8 hours and is it bad that I work overnight 12 hour shifts.. something new to me sorry bout all the questions being rushed

I got diagnosed with discoid lupus over ten years ago after an exhaustive round of misdiagnosis.  My body has many scars not too noticable to most but on my front and back of my upper body and the sides of my face. As well as my right arm. 

I tried everything creams, plaquenel and injections.  The one that finally worked was cloriquine an anit-milaria med but I do not take it anymore the long term side effects of these oral meds scares me.  When I get flare ups as I have now from the sun and stress I get a injection into the area and it clears it up in a couple days before the scarring begins. 

I wish I could figure out what triggers these random ones.  It is hard sometimes to distinguish between a pimple and a flare up until I see the disc like lesions afterwards that hurts.  

Any advice is great.  Thanks

Deanine

Hi all

I was diagnosed with discoid lupus about 14 years ago. It many affects my face and head. I have had numerous treatments none of which are lasted and kept my flares under control or prevented them. I am currently using steroid cream, bettamouse (really helps tame down flare ups), predisdone, methtraxate and vitamin d (as hid from sunlight like a vampire!) I find the things that cause flare ups with me even more than the sun is uva lighting, spicy food and salt. Salt is the main one for me. With all the medication I'm currently on I can still have a major flare up.

It would be good for people to share what people feel triggers their flare ups.

Kind regards

Zoë - uk