Posts - LUPUS UK | HealthUnlocked

LUPUS UK

32,130 members • 28,467 posts

All posts for September 2024

Vasculitis

l had a horrific experience last week I wanted to share. On Monday I started with a stomach ache around 4:00pm. By 5:00am my husband brought me to Urgent Care....

l had a horrific experience last week I wanted to share. On Monday I started wit...

DogHospiceMom

•4 hours ago

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Vasculitis

l had a horrific experience last week I wanted to share. On Monday I started with a stomach ache around 4:00pm. By 5:00am my husband brought me to Urgent Care....

l had a horrific experience last week I wanted to share. On Monday I started wit...

DogHospiceMom

•4 hours ago

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Have you taken part in a clinical trial and are happy to share your experiences for an upcoming video? - Final call

We have one filming slot available for our upcoming clinical trial video, aimed to help people better understand what’s involved in them. Please share with...

We have one filming slot available for our upcoming clinical trial video, aimed ...

nakita_cambow

Moderator•8 hours ago

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silent reflux and methotrexate

Hi I am a long time methotrexate user and have just been diagnosed with acid reflux. I have been put on 40mg Omeprazole. Is anybody else on both? I am...

Hi I am a long time methotrexate user and have just been diagnosed with acid re...

Lovemydogs1

•10 hours ago

2 Replies

advice needed

hi, I’m new here! I’m 28 years old normally healthy ish! My story feels strange, but I’m hoping you guys can help me! I went to my gp in June this year as...

hi, I’m new here! I’m 28 years old normally healthy ish! My story feels strange...

RCLXO

•24 hours ago

5 Replies

My GP Surgery are driving me mad! Now charging for me accessing my blood test results. £1 a sheet, payable in cash on collection.

Good evening all I hope you are all as well as you can be. I have come here to moan about my GP surgery. I live in Pembrokeshire, Wales. I am always made...

Good evening all I hope you are all as well as you can be. I have come here to...

Wendy39

•1 day ago

46 Replies

Help Please

Hi everyone, It has been a super long time since I have been around. Life was okay for a while and then it went wrong. It picked back up in the last few...

Hi everyone, It has been a super long time since I have been around. Life was ...

LouLamb

•1 day ago

6 Replies

Change of appointment assessment

Does anybody know if you have an assessment appointment booked for a DLA review and it's not convenient for instance if you will be away abroad on holiday,...

Does anybody know if you have an assessment appointment booked for a DLA review ...

lynne2496

•1 day ago

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Hi, new here looking for help. seronegative lupus?

Hi all, I am trying to find a lupus specialist in the UK. I have a malar rash, extreme sunlight sensitivity, weird rashes, joint pains, mouth ulcers etc. my GP...

Hi all, I am trying to find a lupus specialist in the UK. I have a malar rash, e...

Wr4ef

•1 day ago

1 Reply

pre lupus

here I pose an interesting question. I currently have suspected myasthenia (relevant to this or not and was also under suspicion of melkerson Rosenthal which...

here I pose an interesting question. I currently have suspected myasthenia (rele...

stiff19

•1 day ago

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methotrexate pen

has anyone else had nausea, fatigue problems with new methotrexate pen delivery system?

has anyone else had nausea, fatigue problems with new methotrexate pen delivery ...

hearm

•1 day ago

7 Replies

not knowing quite whats been going on

I was diagnosed just over 2 years ago with Lupus and been going along quite nicely. However over the last 2-3 weeks trying to work out why I have been really...

I was diagnosed just over 2 years ago with Lupus and been going along quite nice...

minnie4

•2 days ago

10 Replies

Have you taken part in a clinical trial and are happy to share your experiences for an upcoming video?

We are looking for volunteers with lupus who have taken part in a clinical trial and would be happy to talk about their experiences for an upcoming video. The...

We are looking for volunteers with lupus who have taken part in a clinical trial...

nakita_cambow

Moderator•3 days ago

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Lupus and that X chromosome: any expert geneticists out there?🤔

From the Lupus UK website: ”…Many of the genes responsible for the functioning of the immune system are located on the X chromosome. As females have two X...

From the Lupus UK website: ”…Many of the genes responsible for the functioning o...

Betty909090

•3 days ago

8 Replies

Biologics - when/did you move up to them?

Trying to get a measure of the stages and various meds that treat lupus, and wondering if/when anyone was moved up to biologics like Belimumab and Rituximab....

Trying to get a measure of the stages and various meds that treat lupus, and won...

smeackles

•3 days ago

15 Replies

Anyone in Wales ever tried to get treatment in England?

https://www.theguardian.com/society/2024/sep/22/labour-plans-to-allow-travel-between-england-and-wales-for-nhs-treatment Just going to leave this here.

https://www.theguardian.com/society/2024/sep/22/labour-plans-to-allow-travel-bet...

WinterSwimmer

•4 days ago

4 Replies

New to lupus

So I was diagnosed in July this year with lupus and I'm trying to learn how to live with it. My symptoms were so bad that I had to miss some days at work. Then...

So I was diagnosed in July this year with lupus and I'm trying to learn how to l...

Mandino974

•4 days ago

16 Replies

Anyone suffered hairloss

Has anyone suffered patches of hair loss? If so has it grown back?

smeackles

•5 days ago

22 Replies

Broccoli Sprout Extract / Sulforaphane

Hi everyone, I’m reaching out for some help. I was diagnosed with SLE five years ago and have been seeing my rheumatologist regularly. My blood tests indicate...

Hi everyone, I’m reaching out for some help. I was diagnosed with SLE five year...

FEEL-THE-BLUE

•5 days ago

2 Replies

letter following appt

Hi All, I recently saw my rheumatologist for my yearly review. I received a letter with my blood and urine test results. It says O/E urine dip Tr protein....

Hi All, I recently saw my rheumatologist for my yearly review. I received a le...

RA_123

•5 days ago

2 Replies

Women's health

It seems the government is now focusing on women's health but I feel they have forgotten about auto immune conditions that predominantly affect women...

It seems the government is now focusing on women's health but I feel they have f...

catblue1865

•6 days ago

1 Reply

Seeking diagnose

Hi I'm on the waiting list at a specialist centre for last attempt at an overall diagnoses. I've had at least 4 conditions separately diagnosed and have typed...

Hi I'm on the waiting list at a specialist centre for last attempt at an overall...

catblue1865

•6 days ago

2 Replies

Just curious, has anyone been diagnosed with COPD since being diagnosed with Lupus?

I was first diagnosed with asthma, but my lung function has dropped so quickly, it was changed to asthma/COPD. I have never smoked in my life. I am just...

I was first diagnosed with asthma, but my lung function has dropped so quickly, ...

Willow7733

•9 days ago

6 Replies

Possible Lupus?

I've recently had a panel of bloods including FBC, Auto Immune panels, Thyroid ( I have thyroid disease) and others following a GP visit about multiple mouth...

I've recently had a panel of bloods including FBC, Auto Immune panels, Thyroid ...

Femme1

•9 days ago

7 Replies

Anyone take Saphnelo infusions? Would love to hear feedback...

Going to try the Saphnelo infusions.... has anyone had experience with this? Similar to Benlysta but not as much research out yet... thanks.

Going to try the Saphnelo infusions.... has anyone had experience with this? Sim...

amberb444

•9 days ago

1 Reply

Require a Lupus Specialist

Hello can anybody help. I am looking for a lupus specialist. Sick. Of having bits chopped out of my vagina and body. Please I am now desperate. I am look for...

Hello can anybody help. I am looking for a lupus specialist. Sick. Of having bit...

Hurtingpains

•10 days ago

2 Replies

Southampton Lupus Centre of Excellence

Has anyone had experience of Dr Davidson at this clinic? I have my first appointment here next week, any pointers or advice?

Has anyone had experience of Dr Davidson at this clinic? I have my first appoint...

IsleofWight1

•10 days ago

2 Replies

Suddenly getting 'Restricted Access' across 'all HealthUnlocked Communities' and not understanding why

Sharing this in case it ever happens to anyone else. On Friday evening I went to check posts and got red banner messages saying that my access had become...

Sharing this in case it ever happens to anyone else. On Friday evening I went t...

StriatedCaracara

•10 days ago

4 Replies

Persistent trace/low level protein in urine

Hi all I've had persistent trace or low level amounts of protein in urine tests since April -checked on 5 occasions at hospital. Sometimes there is also trace...

Hi all I've had persistent trace or low level amounts of protein in urine tests...

Beau2016

•11 days ago

5 Replies

Shingles or lupus rash ?

Hello I was wondering if anybody had any insight on what this rash could be? I am prone to shingles and on prophylactic antivirals as I am primary...

Hello I was wondering if anybody had any insight on what this rash could be? I a...

Ava0

•11 days ago

19 Replies

Posts - LUPUS UK | HealthUnlocked

LUPUS UK

All posts for September 2024

Vasculitis

Vasculitis

Have you taken part in a clinical trial and are happy to share your experiences for an upcoming video? - Final call

silent reflux and methotrexate

advice needed

My GP Surgery are driving me mad! Now charging for me accessing my blood test results. £1 a sheet, payable in cash on collection.

Help Please

Change of appointment assessment

Hi, new here looking for help. seronegative lupus?

pre lupus

methotrexate pen

not knowing quite whats been going on

Have you taken part in a clinical trial and are happy to share your experiences for an upcoming video?

Lupus and that X chromosome: any expert geneticists out there?🤔

Biologics - when/did you move up to them?

Anyone in Wales ever tried to get treatment in England?

New to lupus

Anyone suffered hairloss

Broccoli Sprout Extract / Sulforaphane

letter following appt

Women's health

Seeking diagnose

Just curious, has anyone been diagnosed with COPD since being diagnosed with Lupus?

Possible Lupus?

Anyone take Saphnelo infusions? Would love to hear feedback...

Require a Lupus Specialist

Southampton Lupus Centre of Excellence

Suddenly getting 'Restricted Access' across 'all HealthUnlocked Communities' and not understanding why

Persistent trace/low level protein in urine

Shingles or lupus rash ?

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