Posts - LUPUS UK | HealthUnlocked

LUPUS UK

31,729 members • 28,088 posts

All posts for October 2023

Lumbar puncture

Hi fellow warriorsFollowing my strange tremors at night, the doctor ordered an EEG (fine) and an MRI. Because the MRI showed a focal lesion the doctor has...

Hi fellow warriorsFollowing my strange tremors at night, the doctor ordered an E...

lupus_paradise

•6 months ago

7 Replies

North Wales Lupus Group - Get together - 12th November 1.30pm!

Come join the North Wales Lupus Group on Sunday 12th November from 1:30 until 3:30pm, at Betty’s Café, Penmaenmawr, LL34 6AA. A great opportunity to meet...

Come join the North Wales Lupus Group on Sunday 12th November from 1:30 until 3:...

michaellasmith

Administrator•6 months ago

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Epilators

Hi, long term steroid use has given me a hairy face and neck. Some are coarse on the face but very fine and fluffy on my neck. I use hair removing cream at the...

Hi, long term steroid use has given me a hairy face and neck. Some are coarse on...

Deiniol

•6 months ago

10 Replies

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Paul Howard to step down as LUPUS UK Chief Executive

It is with sadness that I must announce I will be stepping down from my role as Chief Executive of LUPUS UK at the end of March 2024. I have been a...

It is with sadness that I must announce I will be stepping down from my role as ...

Paul_Howard

Partner•6 months ago

30 Replies

Cutie Late Delivery

Hello everyoneJust thought i'd post these two late lambs to hopefully help keep your spirits going whilst we turn our clocks back!!. These cuties are from...

Hello everyoneJust thought i'd post these two late lambs to hopefully help keep ...

misty14

•6 months ago

38 Replies

Medications on Planes

Hello! I was hoping to get some advice. I was wondering if anyone has had any problems with security and customs at airports, and if so was it easily resolved?...

Hello! I was hoping to get some advice. I was wondering if anyone has had any pr...

poppies_are_red

•6 months ago

15 Replies

Anti DS DNA results

Hi all im a new member. I hope you can help!?I have tested positive for ANA 1/640 and just had a positive result for anti ds dna says 16iu(high) ...what does...

Hi all im a new member. I hope you can help!?I have tested positive for ANA 1/6...

Cushties

•6 months ago

10 Replies

Dysautonomia in Sjögren's - Genital Sore/dry symptoms

Because of the shame or embarrassment sometimes involved in talking about vulvar or vaginal symptoms, I have not really gone into depth with my Rheumatologist....

Because of the shame or embarrassment sometimes involved in talking about vulvar...

Energy14

•6 months ago

46 Replies

Night sweats again

Hi all, I have reviewed many posts for answers on this but symptoms and underlying issues are variable and so posts are inconclusive. I have SLE and Sjogrens....

Hi all, I have reviewed many posts for answers on this but symptoms and underlyi...

mudglutton

•6 months ago

19 Replies

Harrogate Coffee and Chat meeting and Tombola! Saturday 11th November!

Come and join the Harrogate Coffee and Chat group for their next meeting and a Tombola on Saturday 11th November at 10.30am! Everyone welcome!

Come and join the Harrogate Coffee and Chat group for their next meeting and a T...

michaellasmith

Administrator•6 months ago

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The way you access free COVID-19 testing is changing in England and Northern Ireland.

The way you access free COVID-19 testing is changing in England and Northern Ireland. If you are eligible for COVID-19 treatments, you can get free lateral...

The way you access free COVID-19 testing is changing in England and Northern Ire...

Debbie_kinsey

Administrator•6 months ago

8 Replies

Update on study of diagnostic journeys in lupus/SLE, Sjögren's and UCTD.

Hi Thanks to interviewees and organisations I'd like thank all of those who I interviewed for this study in the last few months and to thank Lupus UK,...

Hi Thanks to interviewees and organisations I'd like thank all of those who I ...

RupertW-SUMS

•6 months ago

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Zentiva hydroxychloroquin

Hi all, Today my Tesco pharmacy gave me another brand, thinking that I will not notice? Anyway, I checked and then they said that Zentiva brand is not...

Hi all, Today my Tesco pharmacy gave me another brand, thinking that I will no...

Petrof

•6 months ago

16 Replies

Warning, ugly face

I am not diagnosed with Lupus, but I do have Ehlers Danlos Syndrome and Generalised multi joint Osteoarthritis, fibromyalgia and am hypothyroid.However, I am...

I am not diagnosed with Lupus, but I do have Ehlers Danlos Syndrome and Generali...

Lozza812

•6 months ago

37 Replies

lupus

Hi, so I’ve been under investigation for months now. I haven’t felt well since this time last year, had a miscarriage, pneumonia, swelling on brain.. I see a...

Hi, so I’ve been under investigation for months now. I haven’t felt well since t...

Hidden

•6 months ago

2 Replies

I've finally landed on the ward that I need to be on and it turns out the lights are all LED so I shouldn't have needed to wait 6 days.

The title says it all really. I have finally landed on the ward for Acute medics and an pleased to be under the correct team. However, can you imagine my...

The title says it all really. I have finally landed on the ward for Acute medic...

happytulip

•6 months ago

9 Replies

lupus or not

Hi I have a had unexplained symptoms for years which I think could be lupus ( i was a nurse on a rheumatology ward) I get swollen and sore joints I have low...

Hi I have a had unexplained symptoms for years which I think could be lupus ( i...

Rachbyc

•6 months ago

6 Replies

Hydroxychloroquine increase.

Morning fellow LupiesHope you are keeping as well as you possibly can. I saw my rheumatologist this week and she has increased my hydroxychloroquine from 200mg...

Morning fellow LupiesHope you are keeping as well as you possibly can. I saw my ...

JCZW

•6 months ago

13 Replies

Do I have lupus?

Several years ago I was having a lot of joint pains in my legs and fevers. I was referred to haematology who then referred me on to infectious diseases. The...

Several years ago I was having a lot of joint pains in my legs and fevers. I was...

Poppy-12345

•6 months ago

9 Replies

Lupus & Sjogrens with Rituximab Infusions

Good Morning, I have been on Rituximab Infusions since Jan 2021 ( 6 monthly)just had double Infusion 2 weeks apart. Also on 5mg maint steroids and Mepacrine...

Good Morning, I have been on Rituximab Infusions since Jan 2021 ( 6 monthly)jus...

Haired

•6 months ago

9 Replies

Just an update

Hi Everyone, thank you so much for all of your good wishes. Once again the kindness and support on this forum is incredible. Unfortunately I have not yet...

Hi Everyone, thank you so much for all of your good wishes. Once again the kindn...

happytulip

•6 months ago

22 Replies

Nausea wristbands?

Hi! Has anyone tried and had any luck with using those travel pressure points wristbands normally used for travel sickness? I often feel nauseous, usually for...

Hi! Has anyone tried and had any luck with using those travel pressure points wr...

JodieBells

•6 months ago

5 Replies

ANyone taking Prolia for osteoporosis?

Hi! I have been dealing with osteoporosis for more than 20 years and taken all the pills and Forteo shots. I have Lupus, Hyperparathyroidisn, Low Vitamin D...

Hi! I have been dealing with osteoporosis for more than 20 years and taken all t...

Pumpkin2009

•6 months ago

6 Replies

Period fatigue

Hiya, just after a period I get so emotional and completely exhausted like flare shattered. Is there anything that has helped anyone? I dread periods for how...

Hiya, just after a period I get so emotional and completely exhausted like flare...

DogsMakeLifeGood

•6 months ago

13 Replies

Frontal Fibrosing Alopecea

I was diagnosed with Lupus SLE due to hair loss similar to frontal Fibrosing alopecea and mouth ulcers. I was put on Hydroxychloroquine 200mg twice a I stopped...

I was diagnosed with Lupus SLE due to hair loss similar to frontal Fibrosing alo...

Hidden

•6 months ago

9 Replies

NEW GROUP IN OXFORD - First virtual meeting 1st November at 2pm!

Come join Oxford Lupus Group, for our first virtual meeting on Wednesday the 1st November at 2pm, everyone welcome! For more information or if you would like...

Come join Oxford Lupus Group, for our first virtual meeting on Wednesday the 1st...

michaellasmith

Administrator•6 months ago

4 Replies

Pity Post

Hi everyone. I cannot go into details here but I am not ok. I feel in need of some sense of caring and you have always all been wonderful.

Hi everyone. I cannot go into details here but I am not ok. I feel in need of s...

CecilyParsley

•7 months ago

156 Replies

Hair, When it's Gone and What it Means

This is a post for TheRedOnes - and anyone else whose hair is thinning or gone. Here are two articles from The Guardian this year - one by a man and one by a...

This is a post for TheRedOnes - and anyone else whose hair is thinning or gone. ...

WinterSwimmer

•7 months ago

2 Replies

COVID infection

Hi everyone both my husband and I tested positive for COVID over 2 wks ago with mild symptoms. My husband tested negative after 7 days but I'm still testing...

Hi everyone both my husband and I tested positive for COVID over 2 wks ago with ...

Biddy47

•7 months ago

6 Replies

Shingles vaccine

Hi just after some advice, I'm 55 I have Lupus, and on hydroxychloroquine , seen the advert on TV saying immunocompromised people will now be having shingles...

Hi just after some advice, I'm 55 I have Lupus, and on hydroxychloroquine , see...

MrGrey1234

•7 months ago

24 Replies

Posts - LUPUS UK | HealthUnlocked

LUPUS UK

All posts for October 2023

Lumbar puncture

North Wales Lupus Group - Get together - 12th November 1.30pm!

Epilators

Paul Howard to step down as LUPUS UK Chief Executive

Cutie Late Delivery

Medications on Planes

Anti DS DNA results

Dysautonomia in Sjögren's - Genital Sore/dry symptoms

Night sweats again

Harrogate Coffee and Chat meeting and Tombola! Saturday 11th November!

The way you access free COVID-19 testing is changing in England and Northern Ireland.

Update on study of diagnostic journeys in lupus/SLE, Sjögren's and UCTD.

Zentiva hydroxychloroquin

Warning, ugly face

lupus

I've finally landed on the ward that I need to be on and it turns out the lights are all LED so I shouldn't have needed to wait 6 days.

lupus or not

Hydroxychloroquine increase.

Do I have lupus?

Lupus & Sjogrens with Rituximab Infusions

Just an update

Nausea wristbands?

ANyone taking Prolia for osteoporosis?

Period fatigue

Frontal Fibrosing Alopecea

NEW GROUP IN OXFORD - First virtual meeting 1st November at 2pm!

Pity Post

Hair, When it's Gone and What it Means

COVID infection

Shingles vaccine

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