Discoid Lupus

[BlackAngel]

Hey

I thought I'd start a new thread on DLE. I've just been diagnosed and I'm finding it hard to find any information on DLE and to meet people with DLE. I wanted to know how everyone's coping with the rashes and hair loss and if anyone with DLE is suffering from SLE symptons. I'm suffering from extreme fatigue and joint aches :sad: however I was diagnosed with DLE not SLE. At the moment I'm only using Dermovate on the patches but I have to return in May to decide whether I will be taking tablets. I find that people are put off by my patches, I manage to hide them but sometimes you can see them under my hair. I also told a close friend and his reaction was that I was disgusting and he made me feel like a freak. :mad: Has anyone else had weird reactions from people when they see the patches?

Anyway guys, I wish you all great health everyday of your lives.

Take care, Emma xxxx

[loopylu]

Emma

Hi, I have had DLE for nearly 6 years. It is very hard to find info, you will always find referals to it but very rarely anything that is dedicated to DLE. I too suffer from SLE symptons but doc has said i do not have SLE (get tested every year) and it is common too suffer symptons like fatigue and joint ache after all DLE is still Lupus and these symptons are not specific to SLE.

I have also found it very hard over the years to find others who suffer with DLE alone and sorry if this sounds selfish to anyone else but sometimes its nice to be able to relate to someone who has the same as you and not the same but a different version etc.

I have been extremly lucky with hair loss but in the same breath extremley unlucky with facial lesions ( I have no chin, lips or nose and scars across my cheeks)

Meds - Doc has told me that I have had everything that is possible to get in the UK. Am waiting at mo for Thamidahyde ANA to be licensed over here so I can try it but future looks bleak on that at the moment.

In respect of wierd reactions I have had some very nasty experiences (went for a beauty treatment once at a well known salon and was told to leave as the beautician thought I had Aids and would not treat me - only wanted my eyebrows shaped. Yes i did complain and to the director of the company!) Have had adults make very nasty remarks about me in public places - (these have been strangers and people i have known!) But the worst for me have been the innocent comments made by children, for me they tend to cut the deepest.

On a positive note though you DO toughen upand excuse the oun but you do become thick skinned about it all, you have to otherwise it will bring you down very badly and believe me you do not want to go there ( I did and it was not nice at all).

I have educated myself about DLE and now when I get a comment I can usually either brush it off or quip back with a cute remark that stops them because I know all the remarks are made by these people through ignorance and I will always have the upper hand 'cos I am not ignorant.

Anyway, welcome to the world of DLE, you can live a full and happy life with it, I do. If you do ever want to talk to another DLE please feel free to contact me.

Love & Hugs

Loopylu

[sheila t]

I am Dx with SLE, SCLE AND DISCOID Lupus. I have been lucky enough not to have any bald hair patches. I have lost hair at times and it grows back like baby Hair. Fine here and there. I have some scars on my chest, pink scars on my arms. The summer is so bad for me, well from March to October as I get covered in Lesions, from head to toe and people do make remarks, especially about my face. I always have a butterfly rash on face, worse during flares/stress and when the weather gets warmer. My ear lobes are also affected. I also suffer severe rashes on my head...Rheum said I been lucky I still have my hair there. People do stare. Not sure if I got the Discoid Lupus first, but after 11 years trying to get a Dx... I got Dx with SCLE, DISCOID AND SLE Lupus in 1989. almost 18 years ago. I now learning to say to people who decide to make remarks to me, Have you heard of Lupus? and then explain. But had a Awful Butterfly rash on Face at Xmas and was on the bus home from town. Did over hear two teenager Girls on Bus making remarks about my red ugly face. Cruel enough to point at me. I just gave them such a dirty look... The world can be so Cruel and such ignorant People...yes it worse when Children remarks, especially when a child asks "Mummy whats wrong with that ladies arms" as my skin was covered so badly in lesions last year,as waiting at the tills to pay for shopping. The Child just kept staring at me.

Just wanted to share my Story on My Discoid and Scle rashes. I am on 400mg plaq to help with the rashes and Steriod's Oral and Sunblock 50 Factor. I used to have the steriod cream, for my face, but Rheum was unhappy about using it on my face long term. I use it for a few days at a time on my ear lobes, because they get so bad, I can't lay on them to sleep.

Heres two links on on DLE and the other SCLE with Images

http://www.dermis.net/dermisroot/en/38333/diagnose.htm

http://www.dermis.net/dermisroot/en/38885/diagnose.htm

Sending you Both Hugs
Sheila xxx

[Lily]

Hi Emma and welcome!

I'm sorry things are so miserable for you right now. The standard treatment for Discoid Lupus is to start anti-malarial tablets, usually 400mg daily, the name of the med is Plaquenil. This has the added bonus of protecting you from developing SLE, which can occur in a very small number of discoid patients if left untreated.

I'm surprised your doc has not started you on this treatment already. What sort of doc are you seeing?

love
Lily

[Lily]

Hi again,

I was reading your blog and didnt realise all your information. It seems you saw a Dermatologist who did a skin biopsy and it came back positive? Did the Dermatologist also run bloodwork on you? Without the full lupus workup it would be impossible to tell if your Lupus is "just discoid" or involves more than that, meaning it could be systemic. Many here have discoid patches but its like a side-kick, they also have SLE.

I think a thorough work-up with a Rheumatologist is advisable. They would start you on Plaquenil anyway even if it is Discoid. But they would also run a full gammut of testing which could set your mind at ease, or uncover the need for regular followups and testing should it involve more than just your skin.

love
Lily

[Clare.T]

Hello Emma

I am really concerned that the treatment you are getting is quite inadequate, in fact neglectful.
In these appearance conscious days there is no excuse for not treating skin lupus aggressively with everything it takes to stop the disease in its tracks as quickly as possible. Especially if it has been running wild for two years.

Steroid creams have limited use. Used too often and too much they damage the skin, so their use should be reserved for first aid, for a couple of weeks to calm down a flare. They do nothing at all for the disease process.

If a person is early diagnosed and has a couple of recent lesions a doctor might want to see if strict UV protection plus steroid creams would be enough, since no medicines should be taken unnecessarily.

But it is very common these days to start at once on the oral medication, Plaquenil/hydroxychloroquine. That should show a distinct improvement with 6-8 weeks. The majority of people with skin lupus respond very well and don't need further medication.
If the response isn't good enough then other meds can be added.

The only time steroids are needed in skin lupus is in a crisis and acute flare, when the inflammation has to be very rapidly brought down.
Every effort is made this days to limit the use of steroids to as low a dose for as short a time as possible because of the unfortunate short term side effects like puffy face and weight gain, and very serious long term side effects.

People might get a very short course of steroids to give a kick start to therapy, but to expect somebody to wait 4/5 months before starting any proper medication and talk about starting steroids at that point makes no sense at all. I am shocked !

I suggest you do all you can to get a second opinion asap. If you are in the UK, consider going privately and travelling - there aren't many lupus specialist dermatologists in the UK but they do exist and aren't likely to be more than a day trip away if you are in England.

Meanwhile start collecting your medical records - what tests were done and what were the results. A urine test should have been done too. People with skin lupus should have a thorough lupus work up.

One very well known lupologist has said that skin lupus never morphs into SLE , it's just that people with skin lupus as the first symptom weren't properly checked when they were diagnosed and closely followed thereafter.

I'll get back to you later - have to go out now :)

Clare

[BlackAngel]

Hi again everyone, hope you are all feel good today!

It's so nice to hear from other DLE sufferers. I did see a dermatologist about my scalp lesions, but when the diagnosis was confirmed, it was all a rush. I was told to wait and see how I react to sunlight before I start tablets. Also my scalp lesions were bright red and very sore so the Dr wanted to get rid of the redness. However, the cream isn't making much difference and the nearest appointment I can get is April so I'm just going to have to wait. I had three blood test and a skin biopsy which apparently confirmed Discoid, but SLE was not mentioned so as far as I know the blood test must have been clear.

I feel quite nervous after reading everyones comment about medication. I feel like maybe I should have been started on tablets sooner. All I can do is wait until April 12th to find out what happens next. Lupus is pretty scary though in general. It's crazy how this disease can affect so much of your body but no one knows what causes it or how to get rid of it.

Also, I just read about a Lupus Day Walk in May, and a purple charity wristband on lupus.org which I think would be a good idea to raise some money so hopefully we can one day get a cure for this. Does anyone know if Lupus can be passed on to your children?

Take care everyone, Emma xxxxxx ;)