View Full Version : just got out of a four day stay at my local hospital......
03-07-2013, 04:47 PM
I was dx a year ago with lupus sle, been struggling with the meds, the last few weeks I noticed I was getting sores on my face, and having major flare symptoms. It all came to a head with off the chart joint pain and ulcer type sores on different joints. They did a biopsy and believe I also have discoid lupus..... does anyone have the experience of having both? Oh and it still amazes me how little even the medical community knows about lupus, I had nurses walking in my room asking me what lupus was!!! When will this disease get the respect and awareness it should??
Oh and it still amazes me how little even the medical community knows about lupus, I had nurses walking in my room asking me what lupus was!!! When will this disease get the respect and awareness it should??
It's mind boggling, isn't it? Hospitals have computers with internet access around every corner. They couldn't have taken 5 minutes to google Lupus and read about the basics so they would at least have some idea what they were dealing with before they walked into your room?
As long as the people who should know what Lupus is display such intellectual laziness, the lack of awareness and ignorance will continue.
I don't have any experience with discoid Lupus myself. Sorry you ended up in the hospital.
03-09-2013, 02:41 PM
My sister in law well ex sister in law is an ER nurse. When I told her of my SLE she said hmm I'm sorry to hear tht but I don't know anything about it. My nephew who is 22 was standing there and said Auntie is that autoimmune? I said yes he started laughing and said I learned about it on house.
Sorry to hear of you hospital stay I hope your feeling better soon.
03-23-2013, 10:21 PM
Sorry you've been to the hospital. I hope you are feeling better. I have both SLE and discoid lupus. I also have lupus nephritis & lupus profundus (panniculitis). If you have any questions, ask away. :) I will answer to the best of my ability. I got my diagnosis in 2011, so I'm still learning. Again, I hope you're feeling better.
03-25-2013, 03:44 PM
Professor..... Hi, is discoid and cutaneous lupus the same thing? Docs have used both terms with me. Anyway.... I get these blister type sores all over, but I hate the ones I get on my face and I've used so many creams and ointments, is there any you have used that help speed up the healing? I also notice that these sores can just pop up from being outdoors on a minimum,even covered up with sunblock. How sensitive are you to the Sun? Docs say I could end up very sensitive, the Sun can make me very sick??? I'm an Arizona girl so .... being in the Sun is normal!
03-25-2013, 11:40 PM
From what I understand discoid lupus is a type of cutaneous lupus. It's medical term is chronic cutaneous lupus. This describes the scaly lesions you may get. They show up in your scalp too as an FYI. I get all three types of the cutaneous lupus, which includes the discoid lesions, the malar rash on my face and the 0.1%. This helps them go away. I apply it every other day to the affected areas. And within a week the rash is usually gone. I usually taper my Prednisone up, when in flaring. I don't recommend you do this without speaking to your doctor (if you're on Pred) just to be sure it won't affect your other meds. You should ask your doc about the ointment though. I was instructed to only apply it sporadically because too much of it may cause discoloration of skin because its powerful. Also, I get the discoid lesions on my scalp. This usually coincides with my lupus profundus (lupus affecting the fatty tissue under the skin). So I end up with lumps in my head. I can feel it mostly where I've lost hair from lupus and where I had lost some hair during chemo (cytoxan/cyclophosphamide). My dermatologist usually would give me steroid injections in my head/scalp to help the lumps and active lesions go away. This helped too. It was a little painful but they mixed lidocaine with it so that numbed the area. Unfortunately, I don't remember the name of the injected steroid, but I will ask my doc and let you know. I'm friends with 3 of the Dermatologists in the office I was treated at before moving recently, so I'll text/email one of them and ask. It will probably be more difficult for you to stay out of the sun, but you have to try. You may be pretty photosensitive. It's funny I never had an issue in the sun all my life, but in 2011 I went to the beach for my bday and within a week had the rash on my face. I'm thankful though, because that lead to my diagnosis. Try applying extra sunblock to help. Being in the sun not only brings the rashes, but may also lead to joint pain and cause a crazy flare. That's what happens in my case. We are all different so it may not in your case, but better safe than sorry. Sorry for the long post, but I hope this helped. Let me know if you have anymore questions. And look through the forums for past posts, this site and the members here have been a great help to me. I don't post as often as I did when I first got diagnosed, but I'm lurking around a lot. :-) we are a family here, so anything you need to know, ask away!
Oh i'm sorry you had to be in the hospital, I know how much it sucks in there. I hope your feeling better. I have learned people either don't know what lupus is or only the bad rep lupus has. Lupus tends to be known as the hypochondriac disease and thats not very helpful for the people who actually have it.
03-26-2013, 12:01 PM
I'm sorry you were in the hospital Shanna. Was this your first stay? I've got to the ER and Urgent Care many times but have yet to stay overnight...I'm not looking forward to that first time that it hits me. I am diagnosed with SLE but I get the discoid rashes on my neck and malar rash on my face. I also get scaly rashes on my knuckles and at my hair line as well. I know standard SLE lupus can cause rashes but I've always wondered if I had cutaneous lupus as well? I WILL say though that my rashes are astronomically worse when I'm in the sun or flourescent lighting for long periods of time so I agree with the other posts to really limit sun exposure, wear hats and long sleeves and sunscreen. Keep us posted on how it goes and I hope you feel better! :)
03-31-2013, 03:51 PM
No, this wasn't my first stay in the hospital, it had been almost a year since the last visit though. My doctor has ordered benlysta for me so I'll be starting that within the next week or two. Originally I tried plaquenal, and I had a bad reaction to it, then they put me on Cellcept. I got real sick on it so they had me on half a dose,which now they say that's not enough to treat it,so now I'm moving up to the full dose of cellcept and benlysta. Thanks for all the replies, let's all hope for more research and more options for treating our disease, because it is a rare but serious disease, and anyone who thinks it's a hypochondriac disease would change their minds real quick if they walked in our shoes!! I know it's absolutely changed my life and appearance, thank God I have people in my life that truly love and support me