View Full Version : Hello - One more in the world..

01-18-2014, 04:18 AM
I registerd on this American site because in my country we don't have so many sites where we can learn about L.
I'm from Croatia (Europe), and I appologize for my bad english :)

My skin lupus was officialy diagnosed in October 2013, with biopsy.

I will write later a little more.

Just to say hello for now.

01-18-2014, 02:51 PM
HI there
Are diagnosed with discoid?

01-19-2014, 06:04 AM
Hi there again.
I was at work yesterday so I couldn't write more.

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..

01-20-2014, 10:58 AM
Yeah, I hear you about the sun. I do not go out without using SPF 100 sunscreen EVERYWHERE! I bought a laundry additive, RIT sunguard, which add SPF 30 to your clothing. I have had the windows of my vehicle tinted. It has helped a lot!
My ANA is boarderline and all other panels are negative. So far the only issues I have are skin related. My lesions went undiagnosed for quite a long time and ended up causing significant facial scarring. So my advise is, stay out of the sun as much as possible and wear suncreen at all times!
Hope this helps! :)

01-21-2014, 11:12 AM
Thank you very much for your advice.
Let me ask you, the factor that you use for washing clothes, where it can get in that shop? It's a little problem because we are different people, but at least I know where to ask.
What kind of sunscreen you use? Do you have all helped or? I've had this year, the cheap stuff (until I knew for Lupus) by a factor of 50, and I can not say it helped.

01-21-2014, 03:49 PM
Hi again
I am not sure why everytime I post, it takes a day before it appears. I am trying to reply to you when I see your post.
Anyway, here is the link to purchasing the Sunguard :
I use neutrogena sunscreen products. It is a bit pricier than generic products, but seem to be okay for my sensitive skin.
Hang in there!

01-22-2014, 09:54 AM
Because you're new. After one or two more posts, you will post in real time. Software/Forum settings.

TY for link! So one package is 3 USD, ok price, not cheap but not so hi.
I'll see for Neutrogena, my doc said that there are chemical and nature UV protection cream. It's better to use natural. I will ask in the pharmacy too

01-22-2014, 02:30 PM
Hello and Welcome to our family:
I am sorry to hear that you are having issues with your Lupus that are still lingering. One thing that we must remember is that the sun is really our enemy. However, we must also avoid fluorescent lighting. If you work in an office with fluorescent lighting or visit places with such lighting (malls, department stores, etc.), you must take precautions in order to avoid constant flare-ups (such as the one you are experiencing now).
Many of us wear sunscreen (minimum SPV of 50) every single day..winter, spring, summer, and fall. Also, we wear protective clothing so that our skin is not exposed to the lighting and/or the sun rays. Since you've been diagnosed with discoidal SLE, it is imperative that you take these precautions diligently.
I do hope that you are able to get this under control and find a way to avoid further flare ups. I wish you the very best.

Peace and Blessings

01-22-2014, 04:03 PM
Great point Saysusie. I replaced all my bulbs with the swirly fluorescent ones just before I was dx'd and never gave it a thought until I started educating myself about lupus. They are all gone now. Back to old fashioned ones until they are gone!
The Sunguard wash additive is a great help for those (like me) that can't afford the protective clothing sold online. It lasts through quite a few washes.

01-22-2014, 05:06 PM
Saysusie posted about the moderators being ill right now and that is why it is taking so long for your posts to show up. The first few posts have to be approved but you will reach a point that they are seen automatically. I am still having issues but I am going to try to come more often to approve posts at least. Sorry for the delay but sadly it hit many of us at once

01-22-2014, 05:39 PM
Also think about your windows and car rides.

I had a chair that was by the window and it had blinds on it as well as decorative curtains so I didn't ever consider it could be a problem until I became ill and moved to another couch for a few days. I figured out I had no skin issues there!

Also, don't forget sunscreen on car/bus rides. It will help more than you can imagine

01-23-2014, 09:39 AM
Tgal; That is such great advice/information. Thank You! Hubby and I took a road trip from California to Arizona in a rental car (hence, no tinted windows). By the time we reached Arizona, I was deathly ill and was confined to the hotel bed for three days. It was awful!!
All of our cars have tinted windows due to my Lupus and it never occurred to us that a rental car would be detrimental to my health. Great Advice..again thank you!

Peace and Blessings

Also think about your windows and car rides.

I had a chair that was by the window and it had blinds on it as well as decorative curtains so I didn't ever consider it could be a problem until I became ill and moved to another couch for a few days. I figured out I had no skin issues there!

Also, don't forget sunscreen on car/bus rides. It will help more than you can imagine