Posts - LUPUS UK | HealthUnlocked

LUPUS UK

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Traveling abroad

Hi all, I've been diagnosed with SLE not long time ago, and never had so much medication to take! I am planning 5 days trip abroad first time after diagnosis....

Hi all, I've been diagnosed with SLE not long time ago, and never had so much me...

Morke

•22 hours ago

21 Replies

anxiety waiting upon blood teats

Hi everyone, I started methotrexate injections as well as 20mg prednisone a day plus 400mg plaquenil just over a month ago, I’ve been having blood tests every...

Hi everyone, I started methotrexate injections as well as 20mg prednisone a day ...

Pea_m

•1 day ago

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Anyone on azathioprine for mild lupus?.

Hi all Basically I am looking for some advice and experiences from those who are both medicated and unmedicated. I got diagnosed with lupus dec 2023....

Hi all Basically I am looking for some advice and experiences from those who ar...

Lupusgemini

•1 day ago

4 Replies

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Anyone on azathioprine for mild lupus?.

Hi all Basically I am looking for some advice and experiences from those who are both medicated and unmedicated. I got diagnosed with lupus dec 2023....

Hi all Basically I am looking for some advice and experiences from those who ar...

Lupusgemini

•1 day ago

Be the first to reply

Confusing ANA results

Hi all, 6 months ago my ANA test result was 1:2560 and the same test result last week was 1:320. This seems like a massive difference / improvement to my...

Hi all, 6 months ago my ANA test result was 1:2560 and the same test result last...

MariaVT

•1 day ago

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the time my insights were actually valuable

hi all! I thought I'd share this as someone might find it useful - it's a platform that pays patients like us to co create solutions that healthcare...

hi all! I thought I'd share this as someone might find it useful - it's a platfo...

rokis

•2 days ago

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significance of anti dsdna antibodies

I haven’t seen a rheumatologist for 2 years. The last time I saw him he started me on metoject and said he wanted to see me again in 8 weeks. 3 months prior...

I haven’t seen a rheumatologist for 2 years. The last time I saw him he started ...

thekeys46

•2 days ago

3 Replies

Sun and Fatigue

Hi all Advice and comment needed please. I’m a PE teacher with mild Lupus. As the summer approaches, I’m spending more time in the sun but I’ve found that...

Hi all Advice and comment needed please. I’m a PE teacher with mild Lupus. As...

ManiKochar

•2 days ago

12 Replies

Cyclophosphamide Infusions please help

I really need your help. For the past four months, I’ve been experiencing rashes on my feet and fingertips that worsen in cold temperatures. My white blood...

I really need your help. For the past four months, I’ve been experiencing rashes...

FEEL-THE-BLUE

•2 days ago

3 Replies

Rituximab and flare up

Good morning everyone 😊 I had rituximab last in spring 2020 (my first ever) and this last winter I've had a flare up of my symptoms. Some of my symptoms are...

Good morning everyone 😊 I had rituximab last in spring 2020 (my first ever) and...

BookishVibes

•2 days ago

3 Replies

Not sure where to turn!

Hi everyone, I was diagnosed with Fibromyalgia 15 years ago and have been managing constant pain, particularly in my fingers and toes, which becomes severe...

Hi everyone, I was diagnosed with Fibromyalgia 15 years ago and have been man...

Hippychick11

•3 days ago

7 Replies

Upcoming Online Focus Groups - Where should Lupus UK focus their attention as the national charity supporting people with lupus?

Lupus UK is 35 years old in 2025, and we are taking this opportunity to develop our aims and priorities for the coming years. We want to understand the needs...

Lupus UK is 35 years old in 2025, and we are taking this opportunity to develop ...

nakita_cambow

Moderator•4 days ago

4 Replies

Neck pain & headaches

For the past week I've had severe muscle spasms in my neck and shoulders causing headaches. Everyday, all day. I have ringing in my ears (high pitched). I'm...

For the past week I've had severe muscle spasms in my neck and shoulders causing...

AnonLupi

•5 days ago

11 Replies

Feel like I'm going in circles trying to figure out what's wrong. I think it's lupus!

Hey everyone! I’m a 25-year-old guy in the UK, about 180 cm/86 kg, dealing with what my rheumatologist suspects might be an autoimmune condition. I have...

Hey everyone! I’m a 25-year-old guy in the UK, about 180 cm/86 kg, dealing with ...

Flimsypickle

•6 days ago

36 Replies

CBD oil advice please

Hi All, I hope you are well 😊 I'm going to give CBD oil another try for my Lupus aches and pains, and also hoping it might work for my horrific Raynauds...

Hi All, I hope you are well 😊 I'm going to give CBD oil another try for my Lu...

SurferGuy

•6 days ago

11 Replies

Struggling with Severe Pain & Seeking Advice on Next Steps

Hey everyone, I've been in the hospital for over a week now with severe lower abdominal pain, joint pain, and a high heart rate (over 125 bpm). They did a CT...

Hey everyone, I've been in the hospital for over a week now with severe lower a...

Abarna

•6 days ago

7 Replies

Just when you think you've seen enough of your local A&E waiting room I've been back in it......

So Hugo and I went to the chemist on weds to collect my script. As I parked up the scooter ( i hasnt even got off it) 2 Patterdales tied up at some railings...

So Hugo and I went to the chemist on weds to collect my script. As I parked up t...

Spanielmadlady

•7 days ago

58 Replies

sticking with Mycophenolate

Hi lovely people - newbie here Wanting some info on pushing through side effects. A bit fed up! Been on Mycophenolate for about two months now and am on only...

Hi lovely people - newbie here Wanting some info on pushing through side effect...

Findingthejoy

•8 days ago

10 Replies

DSDNA results

does anyone know how long it takes for DSDNA results to come back please? NHS online data 7 days but the nurse today told me 1-2 days. Thank you!

does anyone know how long it takes for DSDNA results to come back please? NHS on...

Charlotte199456

•8 days ago

8 Replies

Mounjaro and Lupus

Anybody doing Mounjaro to help joints, heart condition etc and experiencing burps that taste like day-old egg mayo sandwiches? 🤣 Help, it’s awful x

Anybody doing Mounjaro to help joints, heart condition etc and experiencing burp...

LupieHel

•8 days ago

26 Replies

repeat blood tests

I have been asked to return to the hospital for repeat blood tests. I have primary Sjögren’s syndrome. Any ideas why? TIA.

I have been asked to return to the hospital for repeat blood tests. I have prima...

Antipas

•9 days ago

7 Replies

Rash still unchanged after 22 months

Has anyone had this, or know someone who developed a rash that just never went away and won't disappear with topical treatment? It's blanching, flat, smooth to...

Has anyone had this, or know someone who developed a rash that just never went a...

Cath24

•10 days ago

5 Replies

please can someone advise - don’t know which way to turn

diagnosed conditions: Sero negative rheumatoid arthritis since 13 years old - carpal tunnel syndrome - reynauds’s - malignant melanoma x 2 (2015 & 2023),...

diagnosed conditions: Sero negative rheumatoid arthritis since 13 years old - c...

Nene2023

•10 days ago

2 Replies

So close..

So I saw rheumatology last week. Unfortunately they weren’t bothered about my rashes and there was no mention of dermatology or biopsies. They also said they...

So I saw rheumatology last week. Unfortunately they weren’t bothered about my ra...

Tonkie

•10 days ago

20 Replies

off topic

just sharing this as very apt I thought

Stills

•11 days ago

7 Replies

lupus and methotrexate injections

Hello everyone, I started methotrexate injections as well as prednisone 20mg daily and 400mg for lupus , with all the medication my stomach wasn’t great and...

Hello everyone, I started methotrexate injections as well as prednisone 20mg d...

Pea_m

•11 days ago

2 Replies

bad flare

Hello, I have SLE. I haven’t had a flare this bad in many years. I have been in bed with fatigue and other symptoms for 10 days. When should I get in touch...

Hello, I have SLE. I haven’t had a flare this bad in many years. I have been i...

MaCoBu

•11 days ago

6 Replies

Antiphospholipid Syndrome

Hiya. I was diagnosed with Antiphospholipid Syndrome some 27yrs ago due to Brain Clots and proving positive to a couple of Blood tests. However, there is now...

Hiya. I was diagnosed with Antiphospholipid Syndrome some 27yrs ago due to Brai...

Mrs6egg

•12 days ago

12 Replies

Does my daughter have sjogrens?

Hi allI have SLE Lupus. My daughter has suffered the following symptoms for some time now. Dry eyes/mouth Fatigue IBS Swollen glands in her neck Has had...

Hi allI have SLE Lupus. My daughter has suffered the following symptoms for some...

Aurali

•12 days ago

2 Replies

A cutie chick

Hello EveryoneJust had to show you this little 'cutie', taking his first wobbly steps on a beach in New York. Part of the beach is cordoned off to protect...

Hello EveryoneJust had to show you this little 'cutie', taking his first wobbly...

misty14

•13 days ago

20 Replies

Write a post or ask a question

Posts - LUPUS UK | HealthUnlocked

LUPUS UK

Traveling abroad

anxiety waiting upon blood teats

Anyone on azathioprine for mild lupus?.

Anyone on azathioprine for mild lupus?.

Confusing ANA results

the time my insights were actually valuable

significance of anti dsdna antibodies

Sun and Fatigue

Cyclophosphamide Infusions please help

Rituximab and flare up

Not sure where to turn!

Upcoming Online Focus Groups - Where should Lupus UK focus their attention as the national charity supporting people with lupus?

Neck pain & headaches

Feel like I'm going in circles trying to figure out what's wrong. I think it's lupus!

CBD oil advice please

Struggling with Severe Pain & Seeking Advice on Next Steps

Just when you think you've seen enough of your local A&E waiting room I've been back in it......

sticking with Mycophenolate

DSDNA results

Mounjaro and Lupus

repeat blood tests

Rash still unchanged after 22 months

please can someone advise - don’t know which way to turn

So close..

off topic

lupus and methotrexate injections

bad flare

Antiphospholipid Syndrome

Does my daughter have sjogrens?

A cutie chick

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