Please sign this petition - help people in Wales living with Lupus access specialist care
Serser3 days ago
Please remove if this isn't allowed. Below is a link to a petition that seeks to improve care for people living in Wales that have Lu...
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Bilateral chronic, reoccurring mastoiditis/ear infections/glue ear, PET and lupus (sle). Does anyone have experience of this?
Serser13 days ago
Hi fellow warriors
I have just been diagnosed with sle but I think I started with it in my teenage years-i am now 36.
I have bilateral (bot...
Lupus?Wegeners? Anti choroidal?
Tinkytink2 months ago
Read letter from eye hospital to my gp saying I am lupus and anti choroidal positive and uninterpretable c anca.....I’m confused. What is an...
World Lupus Day - 10th May
fabwheelie2 months ago
Just wondering what folks are doing for World Lupus Day. I will try to do something even if its just posting a few things on f...
Survey! Help lupus research
Dalilatm3 months ago
Hello everyone! Survey!
@jury_lab: If you have #lupus you can help our research greatly! We are seeking patient opinion from a short survey r...
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Online booking for lupus nurse telephone appt at ST Thomas'
millism4 months ago
Anyone tried to make a telephone lupus nurse appt. online at St Thomas', available dates run until October but there is nothing available......
Support and raising awareness
Ncurt5 months ago
Does anyone have any Instagram or YouTube accounts documenting their story I’m trying to do it as a way to help myself learn to manage an...
Norma26 months ago
I had an appointment with rheumatology late December last year because bloods showed rheumatoid factor, waited 3 months for this appointment...
4 Replies1 Like
Blood test results never discussed
Iona4678 months ago
My doctor refuses to go through my blood tests with me saying I will be told if there is a problem. I ring up and the receptionist mentions ...
3 Replies1 Like
They don't care
borealis10 months ago
I'm an avid Facebook user and other social media. I hit the like and love and cry etc buttons on their posts.
Needless to say I also post ab...
4 Replies3 Likes
LLH7610 months ago
Hi, I'm still waiting on a diagnosis but things are definitely looking like a Lupus decision, previously I've been told I'm seronegative, I'...
Can someone give some advice or there experience with this feel so alone.
malloryann11a year ago
Hi all this is my first time writing on here. I'm a 20 year old female with health problems for a few years now. I'm kind of feeling like gi...
1 Reply1 Like
Someone help I'm so lost
i all this is my first time writing on here. I'm a 20 year old female with health problems for a few years now. I'm kind of feeling like giv...
anyone else have these problems please help
Information about clinical trial
AraRuaa year ago
Hello, a while back I saw some news about a clinical trial designed to investigate Lupus. I would like to know more information about this, ...
Do I have lupus
Loopy1a year ago
Hi I get the butterfly effect on my face but I also have a scab on my face thar itches and hurts and eats in to my face coursing scars ev...
Small cell lung cancer patient with lupus and possible while brain radiotherapy anyone can help?
Kellymwa year ago
My mum was diagnosed with small cell lung cancer and just finished her 4 cycles of chemo. Today we had a consultation to speak about r...
I'm worried that I have Lupus
Oakmossa year ago
I would really appreciate some advice please. I am not expecting a diagnosis just an indication of whether I am being paranoid or not!
West Midlands Cake Sale for World Lupus Day
fabwheeliea year ago
Hi I hope it's Ok to post this ... Call out to everyone who may be able to make it ... For anyone living in West Midlands UK. Do you fancy m...
Akerfoota year ago
Does anyone else here sufffer with HS along side Lupus? I've tried load of different antibiotics, none have been successful. I'm waiting to...
Not looking good
Gayle1959a year ago
Has anyone had their eyelashes fall out? This is the 2nd episode, the first one was in September - 6 months ago.
Seriously I am ready to give up. I need ANY opinions.
tkroll0027a year ago
Hi, I'm Tiff, and I'm new here. Literally I joined two minutes ago.
I am a 19 year old female who has been diagnosed with Fibromyalgia. When ...
5 Replies1 Like
Help understanding symptoms and blood results.
KDen722 years ago
Hi, I m a 44 year old female that has been suffering with lupus 'type' symptoms including a facial rash that flares as symptoms flare, for a...
Serrapeptase or not.
Twdibwd2 years ago
Hello. My question is: Has anyone tried Serrapeptase and have you used it as a supplement to Zentiva/Plaquenil( Hydroxychloroquine) and Pred...
Please could someone tell me...
Sam46792 years ago
I have had three sets of bloods for ANA as doctor wouldn't work on just one set and each time this is what they have read
ANA 1: 1600
Lupie Talk - Starting Women Only Chat Group & Book/Film Group (Men and Women)
Bellaflowe2 years ago
Good evening, everyone.
I've written a few posts over the last few years whilst undergoing diagnosis and treatment for CNS Lupus. I've had lu...
Charbee872 years ago
New here! I have been struggling for years and for years I've been told Rheumatoid arthritis, fibromyalgia etc etc etc. Recently...
Same old, same old..........
I'm back on the Plaquenil / Quinoric, Zentiva roundabout. After taking Plaquenil successfully for 23 years, I am faced with the pressure of ...
calrie672 years ago
I had my first appointment at Guys Lupus clinic a couple of weeks ago and I was very disappointed, I guess I was expecting something differe...
Hidden2 years ago
Hi all I'm nearly 100% sure I have SLE. I have come to this conclusion by obtaining my medical notes for the last 10 years as my doctors see...
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