Systemic Lupus Erythematosus

Create a new post for topic
Join the Conversation on
Systemic Lupus Erythematosus
4K people
0 stories
390 posts
About Systemic Lupus Erythematosus Show topic details
Explore Our Newsletters
What's New in Systemic Lupus Erythematosus
All
Stories
Posts
Videos
Latest
Trending
Post

Anyone taking Benlysta?

Hello friends. I've had to go on medical leave due to an extreme flare. I was diagnosed about 11-12 years ago and after I got on benlysta I felt fantastic! Now, it has stopped working and its all I can do to get out of bed all day. Does anyone have similar experience with Benlysta?#Benlysta #flare #SLE #Lupus

(edited)
Post

Anyone taking Benlysta?

Hello friends. I've had to go on medical leave due to an extreme flare. I was diagnosed about 11-12 years ago and after I got on benlysta I felt fantastic! Now, it has stopped working and its all I can do to get out of bed all day. Does anyone have similar experience with Benlysta?#Benlysta #flare #SLE #Lupus

(edited)
Post
See full photo

Beyond fatigue

Hi everyone I was officially diagnosed with SLE Lupus in 2013 however was sick for years before being diagnosed as I'm sure many of you can understand. In the last year and a half I have become so fatigued that I literally sleep 18-20 hrs a day. Waking usually only when my Husband comes home from work and then awake for about 4 -5 HRS in the evening and still able to go to sleep at night. I'm just wondering if anyone else has delt with fatigue to this extent, and what their Drs have said about this. Mr Drs are currently just running blood tests for the second time before testing for "more rare things". I would really appreciate hearing people's comment's please

Most common user reactions 1 reaction 2 comments
Post

I'm new here!

Hi, my name is terriebriant. I'm here because
I look for any information that can help me get through Lupus flares. I also need support from others who understand the struggle with SLE #MightyTogether #Lupus

Most common user reactionsMost common user reactions 5 reactions 3 comments
Post

Loss of hearing with lupus SLE #Lupus #Fibromyalgia #ChronicFatigue #ChronicPain #HearingLoss #Tinnitus

I live with lupus and fibro and all the things that come with it. My life seems relatively "normal" although my mobility is 👇👇. Do you know that lupus can affect your hearing?? I researched and was shocked to find out it is true. I have had episodes of tinnitus and dealt with it by soft music.

I was recently diagnosed with severe hearing loss on my right side and mild loss on my left. Initially I thought it was tinnitus or wax. This was not the problem. Imagine my shock having to be fit with hearing aids; although I just shrugged and plodded along.

Have your hearing checked. This should be as compulsory as the eye checks if you use hydroxychloroquin.

Most common user reactionsMost common user reactions 11 reactions 7 comments
Post

Bloody noses #Lupus #SystemicLupusErythematosus

Hi! I was diagnosed with SLE just over a month ago so I am still trying to figure out all this out. I get at least 3+ bloody noses a week. Is that part of Lupus? Does this happen to anyone else?

Most common user reactionsMost common user reactions 2 reactions 3 comments
Post

I’m new here!

Hi, my name is BettyChase. I have recently been diagnosed with SLE, every day feels like a new set of symptoms/pains. I am just trying to get a better understanding of what is the disease, what are side effects from meds. sometimes I feel like it’s all in my head and I am manifesting things.

#MightyTogether

Most common user reactions 1 reaction
Post

I’m new here!

Hi, my name is Tracey. I am waiting on what autoimmune I have , he is thinking SLE. It started with sore hips so at my first appt he gave me cortisone injection it was like I lost twenty years I felt great , 3 days later I had tiny bruises all over my arms and legs, bruised easily, bp was at hypertension crisis unmanageable everyday, memory loss, forgetting where I was or how to do something as basic as opening a door ( only lasted a minute or two), and yesterday I said slipper in a sentence to my boss and he was like what? went to a chiropractor and he did a move to decompress my neck and a whole new wave of crazy symptoms .. has anyone ever heard of this ?

#MightyTogether #Lupus

Most common user reactions 3 reactions