Posts - St Thomas Lupus Trust | HealthUnlocked

St Thomas Lupus Trust

1,365 members • 127 posts

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COVID JAB

Hi. I've been isolating for over 2 years. I want to start living again but I am terrified of the Covid jab. Just wondering what are the worst reactions...

Hi. I've been isolating for over 2 years. I want to start living again but I ...

Flo1884

•2 years ago

1 Reply

Rash

Does anybody experience this type of rash ..chest and arms affected no irritation whatsoever and its not raised at all..started a year or 2 ago..one small...

Does anybody experience this type of rash ..chest and arms affected no irritatio...

Lauramonty

•2 years ago

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My partner the vaccine and lupus

Hi all my partner has just received her vaccine letter and is very anxious about the whole thing she has discoid lupus with APS ( anti phospholipid syndrome)...

Hi all my partner has just received her vaccine letter and is very anxious about...

Hidden

•3 years ago

1 Reply

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Vaccine?

Hi im new, anyone get covid vaccine yet?

Princerogers777

•3 years ago

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Not getting correct treatment.

I have had serious lung and kidney infections Lupus related, however, my Rhumatologist has ignored them all, saying this doesn’t happen with Lupus. His boss...

I have had serious lung and kidney infections Lupus related, however, my Rhumato...

Iona467

•4 years ago

1 Reply

Lupus diagnosis - how did you get diagnosed and what were your symptoms please

I've had all the following and more but can't remember all my symptoms, and some overlap with my other issues - I've had skin rashes all over my chest and...

I've had all the following and more but can't remember all my symptoms, and some...

Loopyluw12

•5 years ago

4 Replies

Am I getting Pleurisy again!

Hi My main worries with Lupus are my lungs and kidneys, I’ve been very ill with both yet my GP and doctor have been at pains to say they are def not Lupus...

Hi My main worries with Lupus are my lungs and kidneys, I’ve been very ill with...

Iona467

•5 years ago

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Zentiva- Hydroxychloroquine Sulfate

Is anyone out there on the Generic Hydroxychloroquine Sulfate roundabout again? Plaquenil was my first prescribed drug and it worked like a charm, first on...

Is anyone out there on the Generic Hydroxychloroquine Sulfate roundabout again? ...

Twdibwd

Volunteer•6 years ago

7 Replies

Please sign this petition - help people in Wales living with Lupus access specialist care

Hi all, Please remove if this isn't allowed. Below is a link to a petition that seeks to improve care for people living in Wales that have Lupus. I am on of...

Hi all, Please remove if this isn't allowed. Below is a link to a petition that...

Serser

•6 years ago

1 Reply

Bilateral chronic, reoccurring mastoiditis/ear infections/glue ear, PET and lupus (sle). Does anyone have experience of this?

Hi fellow warriors :) I have just been diagnosed with sle but I think I started with it in my teenage years-i am now 36. I have bilateral (both sides) chronic,...

Hi fellow warriors :) I have just been diagnosed with sle but I think I started ...

Serser

•6 years ago

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Lupus?Wegeners? Anti choroidal?

Read letter from eye hospital to my gp saying I am lupus and anti choroidal positive and uninterpretable c anca.....I’m confused. What is anti choroidal and...

Read letter from eye hospital to my gp saying I am lupus and anti choroidal posi...

Tinkytink

•6 years ago

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World Lupus Day - 10th May

Hello everyone Just wondering what folks are doing for World Lupus Day. I will try to do something even if its just posting a few things on facebook and...

Hello everyone Just wondering what folks are doing for World Lupus Day. I will t...

fabwheelie

•6 years ago

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Survey! Help lupus research

Hello everyone! Survey! @jury_lab: If you have #lupus you can help our research greatly! We are seeking patient opinion from a short survey regarding diet and...

Hello everyone! Survey! @jury_lab: If you have #lupus you can help our research...

Dalilatm

•6 years ago

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Online booking for lupus nurse telephone appt at ST Thomas'

Anyone tried to make a telephone lupus nurse appt. online at St Thomas', available dates run until October but there is nothing available.........what do we do...

Anyone tried to make a telephone lupus nurse appt. online at St Thomas', availab...

millism

•6 years ago

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Support and raising awareness

Hi, Does anyone have any Instagram or YouTube accounts documenting their story I’m trying to do it as a way to help myself learn to manage and cope with this...

Hi, Does anyone have any Instagram or YouTube accounts documenting their story ...

Ncurt

•6 years ago

1 Reply

Confused

I had an appointment with rheumatology late December last year because bloods showed rheumatoid factor, waited 3 months for this appointment after over two...

I had an appointment with rheumatology late December last year because bloods sh...

Norma2

•6 years ago

4 Replies

Blood test results never discussed

My doctor refuses to go through my blood tests with me saying I will be told if there is a problem. I ring up and the receptionist mentions the problems so I...

My doctor refuses to go through my blood tests with me saying I will be told if ...

Iona467

•6 years ago

3 Replies

They don't care

I'm an avid Facebook user and other social media. I hit the like and love and cry etc buttons on their posts. Needless to say I also post about my disease...

I'm an avid Facebook user and other social media. I hit the like and love and cr...

borealis

•7 years ago

2 Replies

Blood Tests

Hi, I'm still waiting on a diagnosis but things are definitely looking like a Lupus decision, previously I've been told I'm seronegative, I'm now about to go...

Hi, I'm still waiting on a diagnosis but things are definitely looking like a Lu...

LLH76

•7 years ago

1 Reply

Can someone give some advice or there experience with this feel so alone.

Hi all this is my first time writing on here. I'm a 20 year old female with health problems for a few years now. I'm kind of feeling like giving up like no one...

Hi all this is my first time writing on here. I'm a 20 year old female with heal...

malloryann11

•7 years ago

1 Reply

Someone help I'm so lost

i all this is my first time writing on here. I'm a 20 year old female with health problems for a few years now. I'm kind of feeling like giving up like no one...

i all this is my first time writing on here. I'm a 20 year old female with healt...

malloryann11

•7 years ago

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anyone else have these problems please help

Hi all this is my first time writing on here. I'm a 20 year old female with health problems for a few years now. I'm kind of feeling like giving up like no one...

Hi all this is my first time writing on here. I'm a 20 year old female with heal...

malloryann11

•7 years ago

1 Reply

Information about clinical trial

Hello, a while back I saw some news about a clinical trial designed to investigate Lupus. I would like to know more information about this, thanks-

Hello, a while back I saw some news about a clinical trial designed to investiga...

AraRua

•7 years ago

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Do I have lupus

Hi I get the butterfly effect on my face but I also have a scab on my face thar itches and hurts and eats in to my face coursing scars every time I do a...

Hi I get the butterfly effect on my face but I also have a scab on my face th...

Loopy1

•7 years ago

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Small cell lung cancer patient with lupus and possible while brain radiotherapy anyone can help?

Hi all My mum was diagnosed with small cell lung cancer and just finished her 4 cycles of chemo. Today we had a consultation to speak about radiotherapy but as...

Hi all My mum was diagnosed with small cell lung cancer and just finished her 4 ...

Kellymw

•7 years ago

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I'm worried that I have Lupus

Hi all I would really appreciate some advice please. I am not expecting a diagnosis just an indication of whether I am being paranoid or not! I was diagnosed...

Hi all I would really appreciate some advice please. I am not expecting a diagno...

Oakmoss

•7 years ago

2 Replies

West Midlands Cake Sale for World Lupus Day

Hi I hope it's Ok to post this ... Call out to everyone who may be able to make it ... For anyone living in West Midlands UK. Do you fancy meeting up and...

Hi I hope it's Ok to post this ... Call out to everyone who may be able to make ...

fabwheelie

•7 years ago

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hidradenitis suppurativa

Does anyone else here sufffer with HS along side Lupus? I've tried load of different antibiotics, none have been successful. I'm waiting to start adalimubab...

Does anyone else here sufffer with HS along side Lupus? I've tried load of diffe...

Akerfoot

•7 years ago

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Not looking good

Has anyone had their eyelashes fall out? This is the 2nd episode, the first one was in September - 6 months ago.

Has anyone had their eyelashes fall out? This is the 2nd episode, the first one ...

Gayle1959

•7 years ago

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Seriously I am ready to give up. I need ANY opinions.

Hi, I'm Tiff, and I'm new here. Literally I joined two minutes ago. I am a 19 year old female who has been diagnosed with Fibromyalgia. When I was 15 I noticed...

Hi, I'm Tiff, and I'm new here. Literally I joined two minutes ago. I am a 19 ye...

tkroll0027

•7 years ago

5 Replies

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Posts - St Thomas Lupus Trust | HealthUnlocked

St Thomas Lupus Trust

COVID JAB

Rash

My partner the vaccine and lupus

Vaccine?

Not getting correct treatment.

Lupus diagnosis - how did you get diagnosed and what were your symptoms please

Am I getting Pleurisy again!

Zentiva- Hydroxychloroquine Sulfate

Please sign this petition - help people in Wales living with Lupus access specialist care

Bilateral chronic, reoccurring mastoiditis/ear infections/glue ear, PET and lupus (sle). Does anyone have experience of this?

Lupus?Wegeners? Anti choroidal?

World Lupus Day - 10th May

Survey! Help lupus research

Online booking for lupus nurse telephone appt at ST Thomas'

Support and raising awareness

Confused

Blood test results never discussed

They don't care

Blood Tests

Can someone give some advice or there experience with this feel so alone.

Someone help I'm so lost

anyone else have these problems please help

Information about clinical trial

Do I have lupus

Small cell lung cancer patient with lupus and possible while brain radiotherapy anyone can help?

I'm worried that I have Lupus

West Midlands Cake Sale for World Lupus Day

hidradenitis suppurativa

Not looking good

Seriously I am ready to give up. I need ANY opinions.

Search posts

Latest poll

How did your lupus affect your Christmas celebrations?

Topics

Archive