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LUPUS UK

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Lupus & HRT

Hi, I started HRT in February and have really felt the benefit of being on this. However I was then diagnosed with lupus in August. A few people have...

Hi, I started HRT in February and have really felt the benefit of being on thi...

Coldplayfeet

•6 hours ago

4 Replies

mounjaro weight loss

I have lupus and APS and I’m on azathioprine, aspirin, hydroxychloroquine, prednisolone and ramipril. im wondering if anyone has tried the weight loss...

I have lupus and APS and I’m on azathioprine, aspirin, hydroxychloroquine, predn...

Lupus1976

•10 hours ago

2 Replies

advice

Hi everyone, just a little bit of advice needed. I’m suspected lupus sle already having Serositis affecting my lungs and heart. I’m on 5 mg prednisone and...

Hi everyone, just a little bit of advice needed. I’m suspected lupus sle already...

Numptybrain

•1 day ago

4 Replies

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Sallydoo

Dear smeackles, I have never responded on this platform before , although I've been a Member for years. However, my heart goes out to your Daughter and I...

Dear smeackles, I have never responded on this platform before , although I've ...

Sallywoo

•2 days ago

2 Replies

Feel confused after diagnosis

Has anyone else been fobbed off by an NHS rheumatologist to then go private and get a full diagnosis? I tick every box for lupus with symptoms and bloods...

Has anyone else been fobbed off by an NHS rheumatologist to then go private and ...

Sushilovey

•2 days ago

13 Replies

Tapering off prednisone.......Hydrocortisone

My wife has had cutaneous lupus for a number of years and throughout she has been taking Hydroxy and Prednisone. She has gradually reduced the prednisone...

My wife has had cutaneous lupus for a number of years and throughout she has bee...

ExpatRay

•2 days ago

6 Replies

Pred, methotrexate and MCTD

Hi all - I posted this on NRAS website and loads of helpful replies. As lupus is part of my diagnosis I thought I would post here too: Oh where to start. Feet...

Hi all - I posted this on NRAS website and loads of helpful replies. As lupus is...

Brychni

•3 days ago

1 Reply

Hair loss

Has anyone who suffered hair loss whilst in first stage following diagnosis and trial and error to find meds that work found any grew back? Daughter (aged...

Has anyone who suffered hair loss whilst in first stage following diagnosis and ...

smeackles

•3 days ago

41 Replies

Lupus in the family

I was diagnosed with Lupus / differentiated connective tissue disease at 64 having having to go privately to a Rheumatologist . Looking back at my health...

I was diagnosed with Lupus / differentiated connective tissue disease at 64 havi...

Eirlys111924

•4 days ago

3 Replies

The Rare Disease Quality Statements Project wants to hear from you about what good care means to you

What does good care & treatment for rare diseases mean to you? If you are a patient, carer, healthcare professionals, policymaker, or represent a patient...

What does good care & treatment for rare diseases mean to you? If you are a pat...

Debbie_kinsey

Administrator•4 days ago

1 Reply

Hello lovely Lupies

I know I haven’t posted for a long time. I have been struggling badly this year with my leg and my gut and thus far no end in sight.I hope to start...

I know I haven’t posted for a long time. I have been struggling badly this year ...

CecilyParsley

•4 days ago

31 Replies

what can I do to help myself?

hello, I am new here. I don't have a diagnosis but I have suspected some kind of auto-immune condition for over 4 years, and this year got the 'butterfly...

hello, I am new here. I don't have a diagnosis but I have suspected some kind o...

Jen_dog

•5 days ago

4 Replies

Dismissed by Rheumatology department yet again, Erythromelalgia - lupus? hydroxchloroquine

After being referred to Rheumatology in August 2023 by Orthopaedic department because of my hand symptoms. Was seen by Rheumatology in January 2024 where I...

After being referred to Rheumatology in August 2023 by Orthopaedic department be...

Skulls570

•5 days ago

17 Replies

negative blood tests

I wrote a while ago about symptoms I had that might be a Rheumatic Disease but all my blood tests have returned negative. I have now been taken off...

I wrote a while ago about symptoms I had that might be a Rheumatic Disease but a...

EmChar

•5 days ago

2 Replies

Methotrexate for lupus

Hi all has anyone had experience with methotrexate for lupus as current medication not great at the moment. Did it help? Any side affects any info would be...

Hi all has anyone had experience with methotrexate for lupus as current medicati...

Flows

•5 days ago

22 Replies

UPDATE! Went to my doctor for bruises and now being accused of self harm

My original post was about 4 months ago and was quite popular so I thought an update is overdue. As you may be aware my rheumatology doctor accused me of...

My original post was about 4 months ago and was quite popular so I thought an up...

Severancered9

•5 days ago

4 Replies

Should I get a Covid jab?

I have had previous injections but worry now due to recent reports about safety and side effects. I have had Covid once before so really anxious about what to...

I have had previous injections but worry now due to recent reports about safety ...

TheShire

•6 days ago

26 Replies

Relapsing polychronitis

My wife has just been advised that her collapsed airway is due to lupus and probably RPC. Does anyone have this please and can offer any experiences about...

My wife has just been advised that her collapsed airway is due to lupus and prob...

jimbo1605

•6 days ago

8 Replies

Thank you to Chelsea, Sammy and Sophie, Maryann and Maddie

Thank you so much for taking the time and courage to share your stories in the latest edition of the Lupus UK magazine. It was interesting to hear about your...

Thank you so much for taking the time and courage to share your stories in the l...

lupime

•7 days ago

3 Replies

Rituximab and GLP-1

Hello all, I’ve been approved Rituximab which I should start in a couple of weeks, however I am currently taking Mounjaro (The GLP-1 drug for weight loss -...

Hello all, I’ve been approved Rituximab which I should start in a couple of wee...

Alexia01

•7 days ago

2 Replies

CAR-T cell therapy & lupus

What is CAR-T cell therapy and what does it mean for people with lupus? You may have seen lots of news articles and TV spots on Friday and the weekend about a...

What is CAR-T cell therapy and what does it mean for people with lupus? You may...

Debbie_kinsey

Administrator•7 days ago

Be the first to reply

Update on health situation: Remission ??Re : Update on Health situation!

Hi Everyone,We were told in clinic that on Thursday that my lupus could possibly be in remission??🤷 But I still have this spots on my leg and I am extremely...

Hi Everyone,We were told in clinic that on Thursday that my lupus could possibly...

KnitSewPurl

•7 days ago

15 Replies

Wedding insurance

Hello. I'm about to book my wedding for 2026. I've spoken to a couple of insurance companies, and it turns out they don't provide cover for any pre-existing...

Hello. I'm about to book my wedding for 2026. I've spoken to a couple of insuran...

Tinkerbell46

•7 days ago

3 Replies

problems replying and posting

can anybody tell me why i cannot reply or post anything at all! thanks

Poshcards

•8 days ago

4 Replies

Belimumab self injection

Hi everyone My Dr is starting me on Belimumab Benlysta and I just wanted to ask what people's experiences have been, particularly with the physical injection...

Hi everyone My Dr is starting me on Belimumab Benlysta and I just wanted to as...

PositivelyLupus

•9 days ago

8 Replies

Steroid Chart

Hello everyoneJust thought i'd post this Ultra Slow Wean Steroid chart called the Meeran Protocol. Anyone having problems reducing their steroids might like...

Hello everyoneJust thought i'd post this Ultra Slow Wean Steroid chart called th...

misty14

•9 days ago

1 Reply

Antiphospholipid Syndrome

I have been diagnosed with APS years ago and I am on life long Warfarin range 3.5-4 I’m suffering agonising pain to both knees but especially the left....

I have been diagnosed with APS years ago and I am on life long Warfarin range 3....

Mrs6egg

•9 days ago

8 Replies

Exciting times.....especially for the younger generation

Three patients in the UK receive ‘groundbreaking’ treatment for lupus Team upday 8 November 2024 · 09:00 Three patients in the UK have received...

Three patients in the UK receive ‘groundbreaking’ treatment for lupus Team upday...

Spanielmadlady

•10 days ago

32 Replies

Advice please for breathlessness & chest pain

Hi everyone I was diagnosed in Sept with Lupus sle and have still not had my hydrixychloriquine. I believe it is now with the dr and I’m waiting for him to...

Hi everyone I was diagnosed in Sept with Lupus sle and have still not had my hyd...

CindersSue

•11 days ago

15 Replies

Methotrexate and skin cancer

Recently started on methotrexate again and was surprised to read all the warnings in tge literature pack about light sensitivity and resulting cancers. I...

Recently started on methotrexate again and was surprised to read all the warning...

Brychni

•11 days ago

13 Replies

Write a post or ask a question

Posts - LUPUS UK | HealthUnlocked

LUPUS UK

Lupus & HRT

mounjaro weight loss

advice

Sallydoo

Feel confused after diagnosis

Tapering off prednisone.......Hydrocortisone

Pred, methotrexate and MCTD

Hair loss

Lupus in the family

The Rare Disease Quality Statements Project wants to hear from you about what good care means to you

Hello lovely Lupies

what can I do to help myself?

Dismissed by Rheumatology department yet again, Erythromelalgia - lupus? hydroxchloroquine

negative blood tests

Methotrexate for lupus

UPDATE! Went to my doctor for bruises and now being accused of self harm

Should I get a Covid jab?

Relapsing polychronitis

Thank you to Chelsea, Sammy and Sophie, Maryann and Maddie

Rituximab and GLP-1

CAR-T cell therapy & lupus

Update on health situation: Remission ??Re : Update on Health situation!

Wedding insurance

problems replying and posting

Belimumab self injection

Steroid Chart

Antiphospholipid Syndrome

Exciting times.....especially for the younger generation

Advice please for breathlessness & chest pain

Methotrexate and skin cancer

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