Posts - LUPUS UK | HealthUnlocked

LUPUS UK

31,744 members • 28,102 posts

All posts for October 2019

You know what no I’m sick of it 🤬

I’m sick of having to prove I’m sick Sick of explaining my symptoms over and over and looking for a reason I’m sick of Being given the least medication...

I’m sick of having to prove I’m sick Sick of explaining my symptoms over and ov...

Buckley123

•5 years ago

47 Replies

Why can’t I be given steroids for suspected autoimmune disease such as lupus, Sjögrens or scleroderma when they work

Hi am seeing my rheumatologist next month in a desperate last ditch attempt to get answers from him. My ENA is always positive and I have tried steroids from...

Hi am seeing my rheumatologist next month in a desperate last ditch attempt to g...

Hidden

•5 years ago

24 Replies

Early detection of breast cancer

I had heard about thermography but unsure if it's available on the NHS yet. If not maybe those with worries should attend an Edinburgh tourist attraction....

I had heard about thermography but unsure if it's available on the NHS yet. If ...

overnighthearingloss

•5 years ago

5 Replies

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Sunscreen and Travel Advice

Hi Everyone, I have SLE and I am due to go to the Caribbean for a week. Unfortunately me and my body have this battle as I absolutely love the Sun and love...

Hi Everyone, I have SLE and I am due to go to the Caribbean for a week. Unfortun...

MsTMP

•5 years ago

6 Replies

Lupus and meal supplements.

Hi. Getting married next year and would like to get my general weight back to before I was diagnosed with Lupus and lived on a diet of steriods. Doing all the...

Hi. Getting married next year and would like to get my general weight back to be...

awareness75

•5 years ago

10 Replies

Finally, An Appointment:):):)

Hi all, I finally have my first new Neurologist appointment on Tuesday. I never thought I would be so excited for one. I have posted here that it has been a...

Hi all, I finally have my first new Neurologist appointment on Tuesday. I never ...

thestorm

•5 years ago

7 Replies

No posters on hospital walls??

I just had to tell you all about my upset today. 😖 I left a message on my Rheumy helpline regarding whether I’ve to reduce my Hydroxychloroquine dose now that...

I just had to tell you all about my upset today. 😖 I left a message on my Rheum...

Spotty-ewe

•5 years ago

73 Replies

Kidney questions

new to all of this and am unsure about some tests that were ordered recently for my by my neurologist. Are these considered normal? I see they are in range,...

new to all of this and am unsure about some tests that were ordered recently for...

JennaShi

•5 years ago

20 Replies

Lupus,and cleansing

Hi guys, does anyone have any tips on face cleansers for lupus sufferers? My sister suffering badly with facial lesions,and needs something gentle to soothe...

Hi guys, does anyone have any tips on face cleansers for lupus sufferers? My sis...

Marielena2

•5 years ago

11 Replies

S.L.E. and hand itch and blistering

SLE for 70 years. Recent palm itch then big blisters formed. 6 weeks later it had peeled .Now it is all starting up again.

SLE for 70 years. Recent palm itch then big blisters formed. 6 weeks later it ha...

mentorscotus

•5 years ago

6 Replies

Lupus and shingles

Hi all, wow! It's been a while. Have any of you with lupus suffered with shingles? If so did it follow the norm for the rash blistering? My rash 1st came up 2...

Hi all, wow! It's been a while. Have any of you with lupus suffered with shingle...

Bronn

•5 years ago

19 Replies

Sometimes I struggle

Hi.thank you all that answered my post...it helped me quite a bit. It hasn't been a good week, I started to have stomach pains, well I think it's stomach...

Hi.thank you all that answered my post...it helped me quite a bit. It hasn't be...

Tavares79

•5 years ago

9 Replies

Blood Tests 🩸

Has anyone got, or can direct me to a complete list of bloods to be checked for Lupus, so when I next see my GP I can check all have been covered?

Has anyone got, or can direct me to a complete list of bloods to be checked for ...

ScottishGirlGla

•5 years ago

18 Replies

Corneal ulcer

I've just got back from the local minor injuries unit as I have what looks like a blister on my eyeball. The Nurse Practitioner diagnosed a corneal ulcer. She...

I've just got back from the local minor injuries unit as I have what looks like ...

bleeny

•5 years ago

16 Replies

Government launches survey about rare disease

In July, the Minister for rare disease at the Department for Health and Social Care, Baroness Blackwood, announced a ‘national conversation’ on rare disease....

In July, the Minister for rare disease at the Department for Health and Social C...

Paul_Howard

Partner•5 years ago

23 Replies

Lupus Anticoagulant - What and why?

Does anybody here know why this is tested for? I finally had some results from a long awaited rheumy consultation at the Bham QE and my bloods were as...

Does anybody here know why this is tested for? I finally had some results from...

j7b7r6

•5 years ago

10 Replies

Joint pain and rash

Hello evereybody, I have red rash on face for last 10 months. I visited few dermatologists where I was worried that it is malar rash where all said that it is...

Hello evereybody, I have red rash on face for last 10 months. I visited few derm...

Vekiqf

•5 years ago

1 Reply

Bloated and full of wind 💨💨💨

Most likely too much information but I’m so bloated. I literally look like I’m 400 years pregnant and full of wind 🥴 I’ve been back on steroids for...

Most likely too much information but I’m so bloated. I literally look like I’m ...

Lisalou19

•5 years ago

26 Replies

Crash

Well last night my lupus nearly killed me and potentially others. I had a head on car crash into a stationary car. I have noticed memory of the preceding 10...

Well last night my lupus nearly killed me and potentially others. I had a head o...

Rubylu

•5 years ago

15 Replies

Symptom Query

Hello all, I have heard that people with Lupus or autoimmune issues are more prone to chostocondritis or other types of chest discomfort, and also...

Hello all, I have heard that people with Lupus or autoimmune issues are more pr...

ScottishGirlGla

•5 years ago

4 Replies

How are you all ❤️

Generally interested how you all are how’s life how’s coping ❤️

Buckley123

•5 years ago

6 Replies

First cold since getting Lupus diagnosis.

I'm probably worrying over nothing but I have my first bad head cold since I was diagnosed and am slightly freaking out. I am currently not on any lupus...

I'm probably worrying over nothing but I have my first bad head cold since I was...

pattypatchwork

•5 years ago

2 Replies

PIP Tribunal today

🍾🍾🍾🍾🍾🍾🍾🍾🍾 I can’t remember the last time I’ve been so nervous! I wasn’t going to go because I dreaded it so much, and decided at pretty much the last...

🍾🍾🍾🍾🍾🍾🍾🍾🍾 I can’t remember the last time I’ve been so nervous! I wasn’t...

Lupiknits

•5 years ago

30 Replies

Another funny one we can all relate to.

Hope I’m not annoying everyone, but I thought this said a lot about how we conduct our days. Here’s to all you warriors! Keep up the good fight (with a smile,...

Hope I’m not annoying everyone, but I thought this said a lot about how we condu...

Hidden

•5 years ago

6 Replies

Plant-based diet

Anyone trying on a plant-based diet? Did you experience any changes with inflammation and overall health?

Anyone trying on a plant-based diet? Did you experience any changes with inflamm...

cgbe

•5 years ago

37 Replies

Do I get diagnosis- welsh NHS patient. Private or NHS ??

Do I get a diagnosis or not - if so NHS or Private. Problem is I live in Cardiff- Welsh NHS!!!! I’m struggling to get a Lupus diagnosis. Been diagnosed with...

Do I get a diagnosis or not - if so NHS or Private. Problem is I live in Cardiff...

Smckntsh3

•5 years ago

55 Replies

complement alternative pathways

At her recent appt at Guys Pooh bear was described by the prof as weird ( something i have know for a long time but nice to have it officially endorsed). The...

At her recent appt at Guys Pooh bear was described by the prof as weird ( someth...

jimbo1605

•5 years ago

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Rash on face

Morning lovely Lupies. Hope you are all ok on this cold morning? I was diagnosed with Lupus 31 years ago. I have also recently in July been diagnosed with...

Morning lovely Lupies. Hope you are all ok on this cold morning? I was diagnosed...

Summerrain14

•5 years ago

2 Replies

Can anyone recommend a paediatric rheumatologist in Home Counties/London?

Hello friends, my 15 year old niece is suffering from severe joint pain, muscle ache, fatigue, brain fog, rashes and pretty much constant menstrual bleeding....

Hello friends, my 15 year old niece is suffering from severe joint pain, muscle ...

Horsewhisper

•5 years ago

8 Replies

Usernames and pictures?

I’m sitting here feeling very disappointed that my new waterproof pants that arrived today and which I’d planned to wear under waterproof shorts on Friday to...

I’m sitting here feeling very disappointed that my new waterproof pants that arr...

Spotty-ewe

•5 years ago

26 Replies

Posts - LUPUS UK | HealthUnlocked

LUPUS UK

All posts for October 2019

You know what no I’m sick of it 🤬

Why can’t I be given steroids for suspected autoimmune disease such as lupus, Sjögrens or scleroderma when they work

Early detection of breast cancer

Sunscreen and Travel Advice

Lupus and meal supplements.

Finally, An Appointment:):):)

No posters on hospital walls??

Kidney questions

Lupus,and cleansing

S.L.E. and hand itch and blistering

Lupus and shingles

Sometimes I struggle

Blood Tests 🩸

Corneal ulcer

Government launches survey about rare disease

Lupus Anticoagulant - What and why?

Joint pain and rash

Bloated and full of wind 💨💨💨

Crash

Symptom Query

How are you all ❤️

First cold since getting Lupus diagnosis.

PIP Tribunal today

Another funny one we can all relate to.

Plant-based diet

Do I get diagnosis- welsh NHS patient. Private or NHS ??

complement alternative pathways

Rash on face

Can anyone recommend a paediatric rheumatologist in Home Counties/London?

Usernames and pictures?

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Did you experience more frequent and/or severe lupus flares during the hot summer 2018 compared to summer 2017? (Please explain in comments)

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