New SLE disease definition by ACR & EULAR 2018: a points tally based on 'ever had' criteria eg ANA, without need for overlapping symptoms!!!
eekt31 minutes ago
"Until now, classification of systemic lupus erythematosus (SLE) was a yes-or-no decision" 😖
"the criteria also can define patients who just...
1 Reply1 Like
Naz200532 minutes ago
Yet another 1 of those days cant be bothered off to bed pain to much so no point sitting stressing out even had meds dont think they helping...
Discoid lupus ..
RachelD1972an hour ago
Hi all, hope you’re all keeping okish. I’m about 6 months down my DLE path and have now been on hydroxychloroquine for approx 10 weeks. Ini...
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Off to see the Wizard-the wizard of eyes and all things neuro
DRunnerchick3 hours ago
Hello my faithful fellow zebras and unicorns! I visited the wizard's castle today (research scientist by any other name) and given my latest...
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LouLamb13 hours ago
So I had my OH appointment yesterday because work referred to me.
The doc agreed with the things on my risk assessments. His thinks physio a...
6 Replies3 Likes
Lupus results totally confused!
balamuti19 hours ago
I am totally confused with these recent results!:
Positive DRVVT and SCT in October 2017 with borderline CT result in November 2016. On rep...
Naz2005a day ago
Yet another morning in pain dont know how im goin to get through the day need to attend family funeral hope everything goes ok . How is ever...
6 Replies1 Like
increased pulse rate and steroids!!!
Lisalou19a day ago
I have been taking steroids for some time now, I dragged myself to the doctors yesterday as I feel I should be being monitored.
My doctor is...
8 Replies2 Likes
WHATS NORMAL 🤦🏻♀️🤦🏻♀️🤦🏻♀️
Dry mouth crackling chest fatigue joints aches & pain hair loss facial rash useless all because of LUPUS SLE taken my everything away my lif...
5 Replies2 Likes
Burning stinging skin
ftjftj63a day ago
Hi everyone 😀
Does anyone have trouble with their digestive system IBS ? I have been put on a fodmap and just wondered if any if you lovely ...
Thought I'd be brave and share this! I hope it evokes some commonly shared feelings...I’ve posted it once before but took it down!
Serser2 days agoPOPULAR
The Butterfly and The Hurricane
Look how she glows! Colours radiating!
Wings proudly displaying a lifetime of scars from unspoken wars,
24 Replies16 Likes
Awaiting pip acknowledgement
LilyMistri22 days ago
It’s been 5 weeks since I sent my Pip application form in, all filled out and sent recorded delivery. I haven’t heard anything back. Am ...
Update on rash 😬
weathervane2 days agoPOPULAR
Finally had gp appointment today . I had 3 issues to discuss , the rash , pain and swelling in joints , occipital pain and headaches. The ra...
30 Replies6 Likes
Susan7122 days ago
Diagnosed yesterday by neurologist in Heraklion hospital. Perscribed gabepentin 300mg 3 x daily. He said i need to have an mri done when i r...
Doctor appointment next week - worried.
Peppytea2 days ago
Hello there my lovelies 💖
First of all I want to say, thank you all so much for your posts and replies - I am usually quite a silent reader ...
11 Replies3 Likes
Absolutely disgusting PIP professional awarded six points daily living and 10 mobility AVM,stroke, epilepsy APS That caused a PE and lupus
Joyful19713 days ago
2000 I started having major seizures and an AVM was found 2003 following one procedure to treat it I had a stroke losing most of the u...
5 Replies1 Like
Move it or lose it! But take someone with you when you do 😜
DRunnerchick4 days ago
I hope you are all having a fine day and enjoying the sunshine ☀️. Yesterday I finally got to go for a hike. My PT finally clea...
14 Replies12 Likes
Fed up of the unknown
Mystik4 days ago
Hi all the warriors 🙏🏼
I wanted to know if anyone has experienced or having nerves issues such as pulling twitching like rubber band breaki...
5 Replies3 Likes
Bronn5 days ago
Sorry but I have a lot questions I need answering here are some.
Perpura suffered with 1 recurring spot (berween 4-6 weeks interval) of perp...
3 Replies1 Like
Lupie living in the Highlands!
talj5 days ago
My name is Natalya and I live in the Highlands of Scotland. I've been diagnosed with Lupus, Hughes, Sjogrens and Chronic Pain Syndrom...
Cheer up butter cup!
Ingerfoot5 days ago
Just thought I would post this I don’t post a lot I don’t know if I have posted before I can’t remember lupus fog lol I read post after post...
Having a flare
2sfamily5 days ago
Im 40 years old. I was diagnosed with Lupus SLE almost a year ago. They started me on Hydroxychloriqine 200MG 2x' a day. That didn't work so...
2 Replies2 Likes
Angellealea16 days ago
Hi I recently had an EMG test because of my blood work & symptoms & inflammatory, I have Sjogren's Syndrome too.
I have a positive Anti-Ro an...
Recent Lupus Diagnosis
Smy746 days ago
Hi. After suffering with seizures, and quite a few of them, my consultant neurologist has ordered some tests, ie, MRI, EEG and also various ...
Better access to consultants/specialists
awareness756 days agoPOPULAR
With the rise and greater awareness of various diseases; many which have a very complex management, does anyone agree with me that if possib...
33 Replies2 Likes
whisperit6 days agoPOPULAR
After my disparaging comments about the PIP process, I've just opened today's post to find that I've been awarded the enhanced rate of PIP f...
34 Replies25 Likes
louise-a6 days agoPOPULAR
Got to thinking about when we were all born and any link to AI conditions and time of year . Loulamb had a birhday recently and a few others...
28 Replies3 Likes
New symtoms after having for over 20 years
Susan7126 days ago
Hi everyone does any one else suffer with terrible pain in their face jaw and teeth ??. I have had bouts of sinusitus in the past however re...
"Lupus fog. " How does it manifest? What is the definition?
Mickyaela7 days ago
There are many posts about memory and Lupus fog particularly with people explaining how they forget things, people's names, words etc. I'm ...
10 Replies2 Likes
Short term memory loss
Lupusfrustrated7 days ago
Just wondering has anyone experienced memory loss or more to the point forgetfulness.. since being diagnosed with Lupus Ive missed appointm...
17 Replies2 Likes
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