Results 1 to 6 of 6

Thread: Lupus erythematodes discoides/ Skin issues, need advice

Hybrid View

  1. #1
    Join Date
    Jan 2014
    Location
    Zagreb, Croatia
    Posts
    9
    Thanks
    0
    Thanked 3 Times in 3 Posts

    Default Lupus erythematodes discoides/ Skin issues, need advice

    Hi all, I will c/p a part of my writing on introducing, so you can know better my condition..

    My diagnose is: Lupus erythematodes discoides


    My first visible symptoms were in June 2012. I was playing beach volleyball (not the first time), for 6 hours (tournament, I didn't play all the time). From 9 AM till 3 PM, when the sun was pretty strong.
    That day it was all normal. I have a picture, and there were no trace of rash.
    Next day, a little red dot came on my face, and as the days come my face was red. I had butterfly rash. First I tough It was because I've used my friends goggles+ the sand+ the sun.. But as the time gone by, it didn't go away. In July 2012 I've had temperature (it isn't officialy connected with Lupus but it was the first time it happened) and weakness in the body and my lymph glands on my armpits and under my right ear. After few days when temperature didn't come down (39,5 degrees), I went to hospital where they tested me for cat disases (I have cats), meningitis... It was all clean. They said I had chronic inflammation of the lymph glands, they gave me antibiotics and I was fine after few days. The only thing it didn't go away is my swollen lymph gland beneath left armpit, and at least 9-10 month anual lymph directly below the ear is swollen.

    Because the rash didn't go away, I visited dermatologist in August 2012. I've done mycological test and it was NEGATIVE. And ANA (it was negative) and dsDNA (<2,6 l U/ mL). There were no signs. Becaus the results of the test came after one month, when I came to dermatologist the second time, my rash has withdrew (it was in September, after 3 months). She said that we can't do biopsy now because my face is clean, but if it happens again, that I should come again.

    I have unexplained headaches for 4 years. They didn't found out what is the reason (don't know is it connected to L).

    This year (I mean 2013), I was at the sea in March. The sun wasn't so strong, so I sunbathed for a half an hour.
    Next day, I saw a little red dot on my face and I knew it is starting again. I was angry and sad. I didn't knew what is happening to me. As the days went by, red "thing" on my face was growing..
    I hoped it will go away so I didn't went dermatologist. In August I went to vacation and it was horrible. I have sun allergy for 10 years, but on few places on my body, it wasn't never so bad.
    This year my face was red, it spread to my eyelid, shoulder, back, decolletage. I was so sensitive to sun...
    It wasn't a vacation of my dream. I looked ugly, red, but when I came home I hopped that it will soon go away. It was nearly September, it must go away..

    In August 30, I was looking the same. It wasn't so horrible, but my butterfly rash was still there and I went to the dermatologist in the hospital just for skin problems.
    They took a part of my face skin and made a biopsy. It was Lupus..

    They suggested me that I come to hospital so they can examine me because 5-10% of skin lupus can passed to Systemic.
    I've been there for 2 and a half weeks, the results were ok, tough they found blood in my urine. I have traces of blood for a long time. I know that.
    C3- 0,65 g/L (0.83-1.77 g/L), C4 - 0,15 g/L (0.29-0.68 g/L) that was low.
    ANA test was again negative. dsDNA test wasn't made.

    They didn't found nothing which would indicate to Systemic Lupus so they wrote that I have this tests for once a year, and tomorrow I have check up.
    I used corticosteroid cream when I was in hospital on my face and chest. It was ok, my butterfly rash withdrew, and a rash on my chest was 95% fine.

    Now after 2 month, I can say I am mad. Not at the doctors, but... I don't know.. Rash on my chest is here again, itchy, not all the time. And on my face there are little red dots. On my right cheek, and on left side of my forehead and a little on scalp. I never had this kind of rash, so I don't know what is happening. Does anyone had this kind of rash?
    And lymph node at the right side of ear is again here..

    Tomorrow I'll ask my doc what is that, but I'm so sad.. I hoped that the sun will be my only enemy, but now... It's winter and I look...

    So this is a part of my story, it's only a beginning..
    Today I've been to my doc, and she said that a rash on my face and decolletage is dear young/old Lupus. I've done mycological test again to make sure there aren't fungus.
    I will start with therapy, Resichin (I presume that tablets called different in America, it's antimalarial tablets). First 10 days, twice a day, and later one a day. I'll drink them till October, when the sun is weaker.
    I have to run OCT test, it is ophthalmological test, where can I control that my eyesight is not worse from taking the medicine. And taking control regularly.


    For my rash I've been given corticosteroids again, here it is called Beloderm cream. I have to use it twice a day for 2 weeks.

    I have a question for all of you who have rash.
    Does it appears regardless of the sun? What do you use on your skin? I've read that aloe vera is good for our skin. My doc said, that when skin is inflamed, you can only treat it with corticosteroids cream, and then later you can put something other.
    Please help me, I'm afraid that next year I'll be worse..

  2. #2
    Saysusie's Avatar
    Saysusie is offline Super Moderator Super ModeratorEmperor of the Universe
    Join Date
    Nov 2001
    Location
    Victorville, California
    Posts
    7,785
    Blog Entries
    10
    Thanks
    1,638
    Thanked 943 Times in 597 Posts

    Default

    Hi:
    Resichin here in the US is most likely plaquenil. We, too, have to have regular tests on our eyes to monitor if the drug has caused any damamge. Beloderm cream here in the US is probably a corticosteroid cream.
    For some, the rash does appear even when there has been no exposure to the sun. As I explained in my response to your other post, fluorescent lighting can cause the rash to appear. However, there are so many triggers, including stress, lack of rest, infection, etc. So, it is up to us to take as many precautions as we can to avoid those things that can cause flare-ups or a reoccurrence of the rash.
    Best of luck to you

    Peace and Blessings
    Namaste
    Saysusie
    Look For The Good and Praise It!

  3. #3
    tgal's Avatar
    tgal is offline Super Moderator Super ModeratorEmperor of the Solar System
    Join Date
    Jan 2010
    Location
    Houston, Texas
    Posts
    4,526
    Thanks
    1,548
    Thanked 1,743 Times in 1,212 Posts

    Default

    I am glad you doctor started you on the antimalerial. It may take 3-6 months to get the full effect but it does help! I haven't have an outbreak since about 6 months after starting mine. I am still very photosensitive but I am careful and the discoid rashes themselves are under control.

    you might want to take them with food because some people do get an upset stomach from them. They never bothered me but know it is a possibility. As Susie says, keep up with your eye exams. They are very important!

    hope you get to feeling better soon!
    Mari

    Success is not final, failure is not fatal: it is the courage to continue that counts.

    ~Winston Churchill~







  4. #4
    Join Date
    Jan 2014
    Location
    Zagreb, Croatia
    Posts
    9
    Thanks
    0
    Thanked 3 Times in 3 Posts

    Default

    Just to put some pic I've made in 2012 and 2013.
    Tomorrow I'll answer you. It's late, gotta sleep

    This is from August 13. 2012 when it appears, 2 month after.


    screen capture freeware


    screen capture

    This is in August 28. 2012, two weeks after the first two shots


    picture sharing


    windows 7 print screen

  5. #5
    Join Date
    Jan 2014
    Location
    Zagreb, Croatia
    Posts
    9
    Thanks
    0
    Thanked 3 Times in 3 Posts

    Default

    Year 2013.
    It apears in May, but those pic were taken when I went on vacation, after 2-3 days in the sun (with SP 50) it get worse
    August 12. 2013


    how to do a screen shot


    20mb image hosting

    After two weeks, It was so worse that my skin started to dry on the edges.
    This was taken in September 8.2013


    windows print screen


    how to do a screen shot

  6. #6
    Join Date
    Jan 2014
    Location
    Zagreb, Croatia
    Posts
    9
    Thanks
    0
    Thanked 3 Times in 3 Posts

    Default

    And these pic were taken 3 weeks ago, on January 4 2013
    This is better now, it is a little lighter. Today is my first day of corticosteroid cream therapy so it will be better soon.


    photo sharing websites


    windows print screen

    I wanna put those pic because it is easier when someone see how something looks, I know it would be easy to me.. Hope it will help someone..
    I'll catch up with you tomorrow. Good night to you all..

  7. The Following User Says Thank You to Leptir For This Useful Post:

    steve.b (01-24-2014)

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •