anyone here have discoid lupus?

[piglet50]

i do and just wondered if there was anyone out there who does, too. do you take medication? do you have many flare ups?

 

[Pinkprincessmom]

Both my sister and a close friend have forms of lupus. Is discoid lupus the skin condition? If so, that's the one my sister has. I don't know if she takes medication. So far her only flare up has been when she was diagnosed...about 1.5 years ago.

Best wishes to you.

 

[piglet50]

yes, this is the skin condition. i was wondering if anyone else had experienced any problems with arthritis or had many flare ups? lupus is a strange disease. i was told that discoid sufferers can sometimes (rarely) get the other really bad type that attacks your organs. (sorry, i don't know the correct name.)

i am glad that your sister is doing good. thank you for the good wishes.

 

[Pinkprincessmom]

Sorry for the delay in response. I've been busy having a baby.

My sister has had some arthritis type symptoms. She was told too that it could develop into the systemic type. My friend with that type had acute kidney failure. Thankfully, after a type of chemo treatment, she is now doing very well.

 

[VAgal76]

Yes, I have discoid lupus. I was diagnosed about 6-7 years ago. I lucked out and got a doctor that served on the medical board for the Lupus Foundation here in my state. I could only think it was divine intervention because no one around me has ever seen anything like I had. In fact, when I had flare ups my doctor would bring in others to show them. It's not everyday they get to see an active patient. Just call me test subject A. They treated it with topical steriod creams. I would have flare ups here and there, but I haven't had a problem in at least 2 years. You will learn to become a hat wearer and slather on sunscreen. It'll just become routine.

Now for the discoid lupus slipping into systemic lupus. Systemic can take all different shapes and forms so it's hard to get a handle on it. From the information I got it was a 20% chance from those beginning with discoid will later develop systemic. That's a low chance. It used to scare the heck of me because I focused too much of my energy on that number. There was about 5% chance I've passed this onto my DS. I finally decided I'd do what I can medically and leave it to a higher being for all the rest. We'll cross that bridge when we get there. In the meantime, I can still have fun in life with just modifying a few things. There are many web sites for support. Plus, you can get clothing and hats with SPF in it! This was quite necessary for touring WDW. I got the hat and we typically take breaks mid-day when the sun is the strongest.

Rheumatory arthitis is a form of systemic lupus and can be accompanied with discoid lupus.

Sorry to be so long winded. I'll be happy to help any way I can.

PS - Pinkprincessmom - CONGRATS!!!!

 

[Wheelsie]

I don't have that...but I jus wanted to suggest you might want to post to the disABILITIES board...

there is alot of great handi info over there

 

[piglet50]

i appreciate the information about arthritis. i've never met anyone else who has discoid so first hand knowledge is good. i'm a big sunscreen user and also wear a big hat when i mow our grass. i have also heard that stress can cause flare ups. thanks to all who replied. good health to each of you and congrats on the baby!