Posts - LUPUS UK | HealthUnlocked

LUPUS UK

31,744 members • 28,102 posts

All posts for March 2022

Awaiting Results

Hi everyone I am waiting on blood test results (9 vials full 😱) and don’t have a diagnosis yet, but I was wondering if recurrent infections are something...

Hi everyone I am waiting on blood test results (9 vials full 😱) and don’t have ...

MaeBea21

•2 years ago

17 Replies

LUPUS UK and EPG Health are collaborating to produce new patient information resources for those living with lupus

LUPUS UK are collaborating with EPG Health in the creation of new patient education resources that will be hosted on the LUPUS UK website and made available to...

LUPUS UK are collaborating with EPG Health in the creation of new patient educat...

Alida_Bennett

Partner•2 years ago

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Would you be interested in attending a support group in Salisbury?

LUPUS UK and Fibromyalgia Action UK are currently gauging interest in a support group in Salisbury. If you would be interested in attending such a group,...

LUPUS UK and Fibromyalgia Action UK are currently gauging interest in a support ...

Alida_Bennett

Partner•2 years ago

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Lupus and COVID-19 Vaccination - UPDATED 21/03/2022

Hi everyone, The NHS is beginning the rollout of 'spring booster' COVID-19 vaccine doses today. This booster is being offered to: * Over-75s. * Residents of...

Hi everyone, The NHS is beginning the rollout of 'spring booster' COVID-19 vacci...

Paul_Howard

Partner•2 years ago

23 Replies

Claiming benefits for lupus?

Hello all, I’ve posted on here before but a while ago. I’m always reading updates . I was diagnosed with lupus just over 2 years ago and it has completely...

Hello all, I’ve posted on here before but a while ago. I’m always reading upd...

YellowLego

•2 years ago

8 Replies

Stress and lupus

Hi! Today I was wondering about stress and it’s effect on lupus and flares. My father died two years ago (March 2nd, 2020). I have no brothers or sisters. My...

Hi! Today I was wondering about stress and it’s effect on lupus and flares. My f...

Willow7733

•2 years ago

62 Replies

Allendronic Acid nightmare?

I know many of you will know I take Hydroxy, Prednisolone, blood pressure X 3 Gabapentin tablets. Also that my rheumatologist “discovered” that I had been left...

I know many of you will know I take Hydroxy, Prednisolone, blood pressure X 3 Ga...

Bowenlady

•2 years ago

24 Replies

Lupins for Lupus

These emerging lupins have captured a little well of dew in their centres this morning. It made me think of the inner well of strength we all have to draw on...

These emerging lupins have captured a little well of dew in their centres this m...

Hidden

•2 years ago

4 Replies

why can't I lose weight?

I'd be really grateful if anyone could provide any advice or information on my query. I was diagnosed with lupus about two years ago and am under the care of...

I'd be really grateful if anyone could provide any advice or information on my q...

Ophelia1

•2 years ago

96 Replies

Update from Alder Hey Children’s Hospital regarding their research into treating lupus in young people

Dr Eve Smith and her team from Alder Hey Children’s hospital have been looking at different ways to treat lupus in young people and how looking at how specific...

Dr Eve Smith and her team from Alder Hey Children’s hospital have been looking a...

Alida_Bennett

Partner•2 years ago

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Two cuties part 2.

Hello everyone This fortnight has gone fast as here i am again hopefully sharing a smile with you all!. I've chosen these two trekking alpacas Sam and Dante...

Hello everyone This fortnight has gone fast as here i am again hopefully sharin...

misty14

•2 years ago

38 Replies

Abnormal mri - fluid on brain

Hi guys, My rhuemy (who ive been sceptical about forawhile) told me i had evidence of white matter changes but nothing to worry about. He referred me to...

Hi guys, My rhuemy (who ive been sceptical about forawhile) told me i had evide...

F1zz

•2 years ago

12 Replies

VOLUNTEER EXPERT PATIENTS NEEDED - Moderate/Severe Lupus Nephritis for NICE Appraisal of Voclosporin

Hi everyone, NICE recently announced that they will be conducting a Health Technology Appraisal (HTA) for the use of voclosporin with immunosuppressives for...

Hi everyone, NICE recently announced that they will be conducting a Health Techn...

Paul_Howard

Partner•2 years ago

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Evusheld (prophylactic COVID-19 treatment) approved by MHRA

We're very pleased to share that the MHRA has approved evusheld, a prophylactic treatment for COVID-19. This treatment is for adults who are unlikely to mount...

We're very pleased to share that the MHRA has approved evusheld, a prophylactic ...

Paul_Howard

Partner•2 years ago

30 Replies

Should I get second opinion? Rheumy not convinced.

TLDR: Rheumy says I should not worry about ANA 320, positive histone antibodies, borderline DFS70 and low C4 because clinical symptoms are missing or mild....

TLDR: Rheumy says I should not worry about ANA 320, positive histone antibodies...

Nasty_Tony

•2 years ago

6 Replies

Newly Diagnosed - help!

Hello I was actually diagnosed with Lupus a year ago but have been in denial. I now find the pain, fatigue, temp fluctuations and rashes too much and am...

Hello I was actually diagnosed with Lupus a year ago but have been in denial. I ...

Becalming

•2 years ago

7 Replies

Anyone can't tolerate HCQ and why?

Heya fellow Lupies, Been having an up and down time on HCQ but it has been the first medication to remove alot of the brain fog and sight issues, improved the...

Heya fellow Lupies, Been having an up and down time on HCQ but it has been the f...

LottieLou96

•2 years ago

25 Replies

Lateral Flow Test - Availability

Hi, I just wondered if anyone else is having problems getting hold of lateral flow tests via the NHS website? I’m in London and back in the office a couple of...

Hi, I just wondered if anyone else is having problems getting hold of lateral fl...

citygirl1234

•2 years ago

15 Replies

Menopause or Lupus or probably both?!

Hello I hope everyone is staying as safe and well as they are able. I am 52 and I am peri menopausal which is making me feel pretty rough but it can be hard to...

Hello I hope everyone is staying as safe and well as they are able. I am 52 and ...

Spandau

•2 years ago

18 Replies

Diagnosis waiting list

Hi there, I’m looking for advice around waiting lists. I’ve been referred to rheumatology due to persistent symptoms associated with autoimmune diseases...

Hi there, I’m looking for advice around waiting lists. I’ve been referred to rhe...

Fernlife

•2 years ago

15 Replies

Hello. New to Group

Hi joined because Lupus is as close to what I have that makes sense. I have been diagnosed with Mixed Connective Tissue Disease, Interstitial Lung Disease and...

Hi joined because Lupus is as close to what I have that makes sense. I have been...

reddogger

•2 years ago

10 Replies

UTI issues

Hi, I recently posted regarding fatigue issues and everyone was so helpful! It was really appreciated! And I thought this forum might be a really good way to...

Hi, I recently posted regarding fatigue issues and everyone was so helpful! It w...

Lioness12267

•2 years ago

9 Replies

Fatigue

Hi, this is my first time using support/forum like this since my diagnoses of SLE in December. I have a four year old daughter at home and I’m really really...

Hi, this is my first time using support/forum like this since my diagnoses of SL...

Lioness12267

•2 years ago

34 Replies

Bee happy

Like lupus warriors this bee is a fighter! It’s early March and he’s already bumbling about collecting nectar from my Christmas roses. Next he’ll be on the...

Like lupus warriors this bee is a fighter! It’s early March and he’s already bum...

Hidden

•2 years ago

11 Replies

OCTAVE Study at Great Ormond Street Hospital

An exciting new study has recently opened at Great Ormond Street Hospital (GOSH) for paediatric rheumatology patients, including those with lupus. The study is...

An exciting new study has recently opened at Great Ormond Street Hospital (GOSH)...

Chanpreet_Walia

LUPUS UK•2 years ago

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Hope this raises a smile

A quick shower, shave and splash of aftershave then I’m done.

Hidden

•2 years ago

18 Replies

Multi-organ failure problems

Heya there 😊 Trying to keep positive atm I always find a way, but not able today to go into work due to back pain and abdominal pains. I'm aware some of it is...

Heya there 😊 Trying to keep positive atm I always find a way, but not able toda...

LottieLou96

•2 years ago

24 Replies

Hope everyone is well

Hi all Hope you are all keeping safe and well, sorry I haven't been on for a long time. Mum, sister and I all had bronchitis but mum's turned to Pneumonia and...

Hi all Hope you are all keeping safe and well, sorry I haven't been on for a lon...

Cal66

•2 years ago

9 Replies

MHRA Drug Safety Update - Hydroxychloroquine & Chloroquine

The MHRA has published a new Drug Safety Update for hydroxychloroquine and chloroquine. It includes two new recommendations for patients and healthcare...

The MHRA has published a new Drug Safety Update for hydroxychloroquine and chlor...

Paul_Howard

Partner•2 years ago

5 Replies

How to cope with the waiting?

Saw rheumatologist yesterday, he suspects SLE and APS but if bloods dont show anything then it's secondary fibromyalgia. I'm not convinced my issues are just...

Saw rheumatologist yesterday, he suspects SLE and APS but if bloods dont show an...

Ziggidy

•2 years ago

11 Replies

Posts - LUPUS UK | HealthUnlocked

LUPUS UK

All posts for March 2022

Awaiting Results

LUPUS UK and EPG Health are collaborating to produce new patient information resources for those living with lupus

Would you be interested in attending a support group in Salisbury?

Lupus and COVID-19 Vaccination - UPDATED 21/03/2022

Claiming benefits for lupus?

Stress and lupus

Allendronic Acid nightmare?

Lupins for Lupus

why can't I lose weight?

Update from Alder Hey Children’s Hospital regarding their research into treating lupus in young people

Two cuties part 2.

Abnormal mri - fluid on brain

VOLUNTEER EXPERT PATIENTS NEEDED - Moderate/Severe Lupus Nephritis for NICE Appraisal of Voclosporin

Evusheld (prophylactic COVID-19 treatment) approved by MHRA

Should I get second opinion? Rheumy not convinced.

Newly Diagnosed - help!

Anyone can't tolerate HCQ and why?

Lateral Flow Test - Availability

Menopause or Lupus or probably both?!

Diagnosis waiting list

Hello. New to Group

UTI issues

Fatigue

Bee happy

OCTAVE Study at Great Ormond Street Hospital

Hope this raises a smile

Multi-organ failure problems

Hope everyone is well

MHRA Drug Safety Update - Hydroxychloroquine & Chloroquine

How to cope with the waiting?

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