Posts - LUPUS UK | HealthUnlocked

LUPUS UK

32,210 members•28,555 posts

All posts for April 2019

Happy Easter from LUPUS UK

Hi everyone, I just wanted to wish you all Happy Easter on behalf of everyone at LUPUS UK. The LUPUS UK office will be closed until Tuesday 23rd April, so if...

Hi everyone, I just wanted to wish you all Happy Easter on behalf of everyone at...

Paul_Howard

Partner•6 years ago

8 Replies

Itchy spots

Hi. A few weeks ago I got a very red burning patch on the outside of my wrist, near the back of my hand. It was about 2/3 inches. It was as if I'd been burned....

Hi. A few weeks ago I got a very red burning patch on the outside of my wrist, n...

Suecon

•6 years ago

6 Replies

Hello

Hi, I'm Hannah, Lupus UK Specialist Nurse at the Queen Elizabeth Hospital Birmingham.

Hi, I'm Hannah, Lupus UK Specialist Nurse at the Queen Elizabeth Hospital Birmin...

LupusUKnurse

•6 years ago

43 Replies

Want to take advantage of all our features? Just log in!

Do any of you take a form of Echinacea?

Was told today this can help stabilise the immune system. I will try most things but never heard of this x

Was told today this can help stabilise the immune system. I will try most thing...

Lisalou19

•6 years ago

20 Replies

Anyone out there with Psoriatic Arthritis and Lupus? How was your PsA diagnosed? How is it diagnosed as different from OA?

I had a hip operation in April 2013. I had growths on my hip socket. The way it was explained to me was that my ball socket on my left hip was shaped like a...

I had a hip operation in April 2013. I had growths on my hip socket. The way it ...

Wendy39

•6 years ago

15 Replies

New Diagnosis

Hi, my GP has recently diagnosed a very high probably of Lupus and i am awaiting a hospital appointment. I have all the other symptoms apart from the rash,...

Hi, my GP has recently diagnosed a very high probably of Lupus and i am awaiting...

alanptodd

•6 years ago

2 Replies

Avise Test

Has anyone heard or tried this test? I will like the website and government article below incase anyone is interested and hasn’t heard of it. Haven’t heard of...

Has anyone heard or tried this test? I will like the website and government arti...

JennaShi

•6 years ago

19 Replies

Blue fingernails?

Does anyone experience blue fingernails but no obvious color change in finger digits?

Does anyone experience blue fingernails but no obvious color change in finger di...

JennaShi

•6 years ago

21 Replies

Sjögrens flare

First time posting... I’ve recently been given a presumptive diagnosis of SS based on dry eyes, joint pain, fatigue and Anti-RO positive. I’m still waiting to...

First time posting... I’ve recently been given a presumptive diagnosis of SS bas...

L154C0

•6 years ago

8 Replies

Questions regarding lab tests

Hi, what tests were helpful to you for either diagnosing or helping to add information to ultimately coming to a diagnosis? Other question has anyone found...

Hi, what tests were helpful to you for either diagnosing or helping to add infor...

JennaShi

•6 years ago

2 Replies

Problems obtaining hydroxychloroquine other that brand Bristol Pharmaceuticals

Hi Everyone, are people being given the Bristol Pharmaceutical brand hydroxychloroquine when they put in their prescriptions. I've just collected my bag of...

Hi Everyone, are people being given the Bristol Pharmaceutical brand hydroxychlo...

KeepingUpBeat

•6 years ago

11 Replies

LUPUS UK Community Survey - Question 5 - Your experience(s) of inequality

Hi everyone, I believe this may be the last planned question for the research study. As with all of these questions please do feel free to comment on each...

Hi everyone, I believe this may be the last planned question for the research st...

Paul_Howard

Partner•6 years ago

82 Replies

Is it only a flare or more?

I had bilateral pulmonary embolism after which only I was diagnosed of Lupus (SLE). Being Nepal, Lupus is still a very new illness and not many doctors are...

I had bilateral pulmonary embolism after which only I was diagnosed of Lupus (SL...

theutopian

•6 years ago

1 Reply

LASER HAIR REMOVAL AND SLE

Hello, I have had SLE since 2006. I take hydroxychlorquine and prednisiolone. I am photosenstive. Since menopause my facial hair is growing very fast. I have...

Hello, I have had SLE since 2006. I take hydroxychlorquine and prednisiolone. I...

ritu71uk

•6 years ago

9 Replies

SLE from 2013

My wife (age 43) was diagnosed with SLE - Nephrotic syndrome class IV. I was on and off on Wysolene (5mg to 40 mg at times) and Immutil 360 (4 times a day)...

My wife (age 43) was diagnosed with SLE - Nephrotic syndrome class IV. I was on ...

sam9

•6 years ago

6 Replies

New to this - anyone have lupus attacking liver?

This is my first posting, I'm new here - hope I am doing this correctly :-) I am newly diagnosed with either SLE attacking my liver or it may be SLE with...

This is my first posting, I'm new here - hope I am doing this correctly :-) I ...

Lupiliver

•6 years ago

15 Replies

Something I’ve Dreaded: A Fall (I’m OK though)

It’s exceptionally cold here and I wasn’t particularly looking forward to taking the Blue boy out for his little careful walk. I went to get three thermal...

It’s exceptionally cold here and I wasn’t particularly looking forward to taking...

Lupiknits

•6 years ago

21 Replies

Tendons

Hi can I ask if anyone has problems with the tendons in their shoulders or down the back of their thighs. I’ve had pain for months but as always my blood...

Hi can I ask if anyone has problems with the tendons in their shoulders or down ...

Luppylou

•6 years ago

9 Replies

Hydroxychloroquine by Zentiva

Does anyone know how I can get hydroxychloroquine by Zentiva? I have been getting it from Boots for the past year but today I was told that there is a...

Does anyone know how I can get hydroxychloroquine by Zentiva? I have been getti...

angelina65

•6 years ago

6 Replies

Any ideas with worsening weird rash please?

Hello, anybody had anything similar to this photo or got any ideas please?! I’ve had it 3 times over the past few months, this time is much worse than before...

Hello, anybody had anything similar to this photo or got any ideas please?! I’ve...

Melba1

•6 years ago

62 Replies

Hydroxychloroquine side effects

Hello! My consultant believes that my symptoms indicate lupus, however, my bloods did not provide a positive ANA result. He has said that I have Sjogrens,...

Hello! My consultant believes that my symptoms indicate lupus, however, my blood...

Jasmine22

•6 years ago

11 Replies

Article about feeing up GPs time

Interestingly, my practice does this . Otherwise, hold your breath until 2022 chaps https://www.bbc.co.uk/news/health-47909618

Interestingly, my practice does this . Otherwise, hold your breath until 2022 ch...

Lupiknits

•6 years ago

10 Replies

Pelvis, hip, lower back and coccyx pain

I’m wondering if anyone has experienced pelvic, hip, lower back, pubic bone and pelvic pain that comes and goes? Sometimes I have no pain whatsoever for a few...

I’m wondering if anyone has experienced pelvic, hip, lower back, pubic bone and ...

Yellow5

•6 years ago

9 Replies

Having a nightmare.

Have only been on methotextrate a month and had to stop tak8ng it as got four serious infections and nearly ended up in hospital. I have informed my Lupus...

Have only been on methotextrate a month and had to stop tak8ng it as got four se...

Wrexlu

•6 years ago

5 Replies

Is your heart rate elevated?

My regular heart rate is about 80-90. My fitbit thinks im working out 10h a day. I read about that the optimal heart rate during sleep resembles hammock....

My regular heart rate is about 80-90. My fitbit thinks im working out 10h a day....

miccika1

•6 years ago

14 Replies

Lupus Congress - F/U to Myths of Lupus

Per the other thread, here’s the screen shot. Trying to figure out how to forward the info 😕

Per the other thread, here’s the screen shot. Trying to figure out how to forwar...

katidid

•6 years ago

3 Replies

Who can relate to this photo . It did make me chuckle. This is so me :-)

When your friend sends you this and you just think "yep thats me"

Lisalou19

•6 years ago

10 Replies

I’m posting a lot I know but I feel so hopeless

My sons birthday tomorrow he will be 6 ❤️ I’ve spent all day feels like wrapping my hands hurt and so do my legs bone pain is just throbbing away at me. My...

My sons birthday tomorrow he will be 6 ❤️ I’ve spent all day feels like wrapping...

Buckley123

•6 years ago

18 Replies

RITUXIMAB infusion

Hi my name is Nancy im 21 years of age I’m New to lupus and rheumatoid arthritis I have been on methotrexate however it’s not working good enough so now I’ve...

Hi my name is Nancy im 21 years of age I’m New to lupus and rheumatoid arthriti...

nancyannexo

•6 years ago

2 Replies

Raise awareness and understanding of lupus in a professional London photoshoot for World Lupus Day

Do you want to help raise awareness and understanding about lupus? Idorsia Pharmaceuticals, who are close to starting a phase 2 trial for their new lupus...

Do you want to help raise awareness and understanding about lupus? Idorsia Phar...

Paul_Howard

Partner•6 years ago

4 Replies

Posts - LUPUS UK | HealthUnlocked

LUPUS UK

All posts for April 2019

Happy Easter from LUPUS UK

Itchy spots

Hello

Do any of you take a form of Echinacea?

Anyone out there with Psoriatic Arthritis and Lupus? How was your PsA diagnosed? How is it diagnosed as different from OA?

New Diagnosis

Avise Test

Blue fingernails?

Sjögrens flare

Questions regarding lab tests

Problems obtaining hydroxychloroquine other that brand Bristol Pharmaceuticals

LUPUS UK Community Survey - Question 5 - Your experience(s) of inequality

Is it only a flare or more?

LASER HAIR REMOVAL AND SLE

SLE from 2013

New to this - anyone have lupus attacking liver?

Something I’ve Dreaded: A Fall (I’m OK though)

Tendons

Hydroxychloroquine by Zentiva

Any ideas with worsening weird rash please?

Hydroxychloroquine side effects

Article about feeing up GPs time

Pelvis, hip, lower back and coccyx pain

Having a nightmare.

Is your heart rate elevated?

Lupus Congress - F/U to Myths of Lupus

Who can relate to this photo . It did make me chuckle. This is so me :-)

I’m posting a lot I know but I feel so hopeless

RITUXIMAB infusion

Raise awareness and understanding of lupus in a professional London photoshoot for World Lupus Day

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