Posts - LUPUS UK | HealthUnlocked

LUPUS UK

31,729 members • 28,088 posts

All posts for March 2023

Anyone have a new perspective on prednisone “ok” dose?

Hi everyone. I hope Spring is almost near for you. Here where I live in the States we actually skipped winter and rolling through Spring into summer. I’ve...

Hi everyone. I hope Spring is almost near for you. Here where I live in the Stat...

MrsMarigold

•1 year ago

13 Replies

Sickness

Hi everyone I have lupus . I can just randomly feel sick with no warning. Does anyone else have this?

Hi everyone I have lupus . I can just randomly feel sick with no warning. Does a...

Bull5160

•1 year ago

17 Replies

Broken blood vessels in the eyes / lupus

I know this isn’t anything to worry about generally but I’ve been getting blood spots/broken blood vessels in my eyes very regularly (at least once every two...

I know this isn’t anything to worry about generally but I’ve been getting blood ...

ShannonB

•1 year ago

8 Replies

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Announcing the launch of the 2023 COVID-19 GRA Pediatric Survey

Please see below from the Patient Engagement Team at the GRA - please take a few moments to complete this important survey. You can find further information...

Please see below from the Patient Engagement Team at the GRA - please take a few...

Alida_Bennett

Partner•1 year ago

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Nytol herbal and other meds

HiReally struggling to get some sleep at the moment so I brought nytol herbal. Just wondered there's a reason I can't take it. I'm on steriods,...

HiReally struggling to get some sleep at the moment so I brought nytol herbal. J...

Sammyb246

•1 year ago

7 Replies

baricitnib - how long did it take to work

Hi - I started taking barticinib in the beginning of December. I was previously on a similar drug that i came off in July so there was 5 or so months when I...

Hi - I started taking barticinib in the beginning of December. I was previously ...

Bettina1865

•1 year ago

1 Reply

A tiny cutie

Hello EveryoneJust had to show you this little 'cutie', a harvest mouse clinging to a daffodil in North Yorkshire. Adults can weigh less than 10 grams!. Hope...

Hello EveryoneJust had to show you this little 'cutie', a harvest mouse clinging...

misty14

•1 year ago

36 Replies

Anyone experiencing severe dry eyes with lupus?

I started have severe issues with dry eyes a little over a year ago along with dry mouth. A couple of weeks ago I saw my PCP and had her run tests for...

I started have severe issues with dry eyes a little over a year ago along with d...

ladylooking

•1 year ago

29 Replies

Infusion or tablets for covid?

Tested positive this morning and have had a call asking which I wanted. Consultant apparently ringing later to discuss. I was put on the spot and said tablets...

Tested positive this morning and have had a call asking which I wanted. Consulta...

Cathyan

•1 year ago

15 Replies

Hydroxychloroquine

Hello all - I've got mild to moderate lupus. I stopped taking methotrexate a few months ago because of side effects and am thinking of going back on...

Hello all - I've got mild to moderate lupus. I stopped taking methotrexate a f...

Ophelia1

•1 year ago

46 Replies

Been Phisio today

Felt a bit better with ankle knees. He said you got strong quads. Ankles seemed ok but stiff.Felt ok a bit better in walking short distance. Now the only thing...

Felt a bit better with ankle knees. He said you got strong quads. Ankles seemed ...

minka

•1 year ago

2 Replies

Update on timeline for Spring 2023 COVID-19 boosters

We've updated our article on the COVID-19 vaccination programme with the dates for the Spring 2023 booster programme. A summary of the timeline: - People who...

We've updated our article on the COVID-19 vaccination programme with the dates f...

Debbie_kinsey

Administrator•1 year ago

6 Replies

Quick update for people newly getting letters about COVID-19 treatment eligibility

Last week there was a lot of discussion from people saying they've received letters or emails telling them that they are eligible for free lateral flow tests...

Last week there was a lot of discussion from people saying they've received lett...

Debbie_kinsey

Administrator•1 year ago

5 Replies

muscle spasms

I’m really suffering with painful muscles in arms, legs and shoulders. They are so weak and go into cramp at the slightest effort. Does anyone know if this...

I’m really suffering with painful muscles in arms, legs and shoulders. They are ...

BK47

•1 year ago

8 Replies

Odd reoccurring rash

On the diagnosis pathway. Just waiting for last Rhumy appt in May. I get a malar rash in the sunlight. But I also get an odd rash on my face (red, not...

On the diagnosis pathway. Just waiting for last Rhumy appt in May. I get a m...

King-coleman

•1 year ago

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cutaneous lupus

My daughter has (we think as no one is sure!) cutaneous lupus which affects her skin. Her regular flare ups result in very painful skin lesions which blister...

My daughter has (we think as no one is sure!) cutaneous lupus which affects her ...

Nellons

•1 year ago

18 Replies

recent Covid infection and sle activity

hello everyone! So I’ve had sle since I was 13- it was rough then but then it was mild all along. I tested positive for Covid about 3 days ago - annoying sore...

hello everyone! So I’ve had sle since I was 13- it was rough then but then it w...

Jamzie

•1 year ago

11 Replies

Newly diagnosed just a rant!!

HiNewly diagnosed literally 5 days ago. Was in hospital fir 3 weeks wbc platelets and hb literally 0. Struggled through bone marrow biopsy lymphoid biopsy....

HiNewly diagnosed literally 5 days ago. Was in hospital fir 3 weeks wbc platelet...

Sammyb246

•1 year ago

7 Replies

Omeprazole

Hi all. Just wondering anyone gets stomach upsets when given different makes of omeprazole . Mine was changed last time , had gastritis and fast tummy for a...

Hi all. Just wondering anyone gets stomach upsets when given different makes of ...

Potatoheat

•1 year ago

2 Replies

Frustrated

Hi everyone, after several years of being told my symptoms were all linked to anxiety by my gp, I eventually went private to see a rheumatologist. Last year I...

Hi everyone, after several years of being told my symptoms were all linked to an...

Mctd

•1 year ago

8 Replies

Facet Joint Arthopathy - possible Lupus

Hi, I have been struggling with my health for two and a half years since being diagnosed with Hypothyroidism. I have long considered comorbid Lupus a...

Hi, I have been struggling with my health for two and a half years since being ...

ErraticAspie

•1 year ago

1 Reply

Zentiva Hydroxychloroquine

I didn't think this would happen to me but I just experienced what many have recently as the dreaded 'we can't get you Zentiva' from the chemist. I was...

I didn't think this would happen to me but I just experienced what many have rec...

dg70

•1 year ago

40 Replies

Lupus and upper and lower and mid back pains.

Hi everyone, I was diagnosed with lupus 3 years ago and I had back pains (sciatica, so back pains is not new) before my diagnosis with lupus. But recently,...

Hi everyone, I was diagnosed with lupus 3 years ago and I had back pains (sciat...

Sunflowers_2020

•1 year ago

6 Replies

Hello from Manchester

Just to say hello - I have had a recent diagnosis of SLE - Lupus and grateful to have discovered Lupus UK - having spent too much time doom=scrolling and...

Just to say hello - I have had a recent diagnosis of SLE - Lupus and grateful to...

ancoats23

•1 year ago

9 Replies

NICE recommends voclosporin to treat lupus nephritis

NICE have made a recommendation to the NHS that a new treatment, voclosporin, can be used in combination with mycophenolate mofetil (MMF) to treat some...

NICE have made a recommendation to the NHS that a new treatment, voclosporin, ca...

Debbie_kinsey

Administrator•1 year ago

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Lupus and Ramadan resource now available via LUPUS UK's website

Hi everyone, We have now published a blog article about lupus and Ramadan which includes our recorded webinar with Professor Rahman about keeping well during...

Hi everyone, We have now published a blog article about lupus and Ramadan which...

Chanpreet_Walia

LUPUS UK•1 year ago

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Potential new therapeutic target for inflammatory diseases such as lupus and sepsis 🍀🤞

Morning lupis! I hope you are doing very well. Scientists have made an important breakthrough in understanding what goes wrong in our bodies during the...

Morning lupis! I hope you are doing very well. Scientists have made an import...

Naladog

•1 year ago

2 Replies

Lupus rashes

Are these lupus rashes? I have rashes from 1 month ago, but they were few in number .From 2 days a go I developed a lot of rashes in my hands neck shoulder

Are these lupus rashes? I have rashes from 1 month ago, but they were few in num...

Camillaadrian

•1 year ago

1 Reply

Support groups

Hi, does anyone know if there is an East midlands support group? I've clicked on the link a number of times and it doesn't seem to work thanks:)

Hi, does anyone know if there is an East midlands support group? I've clicked on...

KDi-Lena

•1 year ago

1 Reply

Live Yoghurt

Hi there - just to run this past everyone - I have just recovered from Covid which has left me with either Covid tongue or oral thrush - not sure which yet -...

Hi there - just to run this past everyone - I have just recovered from Covid whi...

posthinking01

•1 year ago

23 Replies

Posts - LUPUS UK | HealthUnlocked

LUPUS UK

All posts for March 2023

Anyone have a new perspective on prednisone “ok” dose?

Sickness

Broken blood vessels in the eyes / lupus

Announcing the launch of the 2023 COVID-19 GRA Pediatric Survey

Nytol herbal and other meds

baricitnib - how long did it take to work

A tiny cutie

Anyone experiencing severe dry eyes with lupus?

Infusion or tablets for covid?

Hydroxychloroquine

Been Phisio today

Update on timeline for Spring 2023 COVID-19 boosters

Quick update for people newly getting letters about COVID-19 treatment eligibility

muscle spasms

Odd reoccurring rash

cutaneous lupus

recent Covid infection and sle activity

Newly diagnosed just a rant!!

Omeprazole

Frustrated

Facet Joint Arthopathy - possible Lupus

Zentiva Hydroxychloroquine

Lupus and upper and lower and mid back pains.

Hello from Manchester

NICE recommends voclosporin to treat lupus nephritis

Lupus and Ramadan resource now available via LUPUS UK's website

Potential new therapeutic target for inflammatory diseases such as lupus and sepsis 🍀🤞

Lupus rashes

Support groups

Live Yoghurt

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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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