Posts - LUPUS UK | HealthUnlocked

LUPUS UK

32,210 members•28,555 posts

All posts for October 2018

Some things that have helped relieve my symptoms

Hello all, I wanted to post and let you know about some things which have really helped relieve my Lupus symptoms over the past few months. For years, I was...

Hello all, I wanted to post and let you know about some things which have really...

MaCoBu

•6 years ago

19 Replies

Reduced steroids finally but for how long!??!!!

I have been on increased steroids now for about 3 months after a long flare kicked off from the sun and just finally got back down to my maintenance dose of...

I have been on increased steroids now for about 3 months after a long flare kick...

Sara_A

•6 years ago

3 Replies

Help with how I’m feeling

I have Ra I was on methotrexate but after a few years I started feeling sick so was put on Hydroxychioroquine andsalazopyrin I’ve only been on these tablets...

I have Ra I was on methotrexate but after a few years I started feeling sick so ...

Laceygreen

•6 years ago

2 Replies

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Finally a diagnosis we think

I recently went for a follow up with my neurologist. I think the last time I posted I had just been diagnosed with RRMS. After further testing and another...

I recently went for a follow up with my neurologist. I think the last time I pos...

I814u24u

•6 years ago

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Hydroxychlorquine

Is placquinil still generally available and how are folk finding Quinoric? Best wishes Kevin

Is placquinil still generally available and how are folk finding Quinoric? Best ...

Kevin53

•6 years ago

15 Replies

"I'm fine in the mornings, but by the afternoon the fatigue really kicks in"...it's remarkable how the brain works: A BBC article and audio

"Mentally I have to see that this is me now," she says. "I'm happy in my own skin again. So there's no reason why I can't just run with life as I am now."...

"Mentally I have to see that this is me now," she says. "I'm happy in my own ski...

eekt

•6 years ago

5 Replies

Do I have lupus

Have had several positive Ana tests over the last 10 years and now had extensive testing with my rheumatologist who assured me the last lot of tests would give...

Have had several positive Ana tests over the last 10 years and now had extensive...

Hidden

•6 years ago

18 Replies

New Symptoms

Hi everyone! Not posted on here in a long time, mainly because there's been no changes, no medication is helping and I've also not been getting worse (I take...

Hi everyone! Not posted on here in a long time, mainly because there's been no c...

Athens94

•6 years ago

5 Replies

Flu vaccine shortage

I was booked to have my flu jab at my GP this week but the appointment was cancelled due to shortage of vaccine. Despite being 'vulnerable' as I have Lupus...

I was booked to have my flu jab at my GP this week but the appointment was cance...

Kate-L

•6 years ago

6 Replies

Hello Everyone!

Hi all! My first time joining any sort of forum. I was diagnosed with lupus sle 10 years ago. Went through all the usual bad stuff (things that were all new to...

Hi all! My first time joining any sort of forum. I was diagnosed with lupus sle ...

Jaguar50

•6 years ago

7 Replies

THANK YOU EVERYONE

Just want to say thank you to evry1 for they kind support much apperciated & im glad i joined the forum xxx

Just want to say thank you to evry1 for they kind support much apperciated & im ...

Naz2005

•6 years ago

3 Replies

Lupus anticoagulant

Hi. I posted a few weeks ago when I tested positive for lupus anticoagulant. My GP referred me to rheumatology in Broadgreen, Liverpool. I've just received a...

Hi. I posted a few weeks ago when I tested positive for lupus anticoagulant. My ...

Suecon

•6 years ago

11 Replies

Mycophenolate mofetil prescribed for DLE

Hiya Just been prescribed Mycophenolate mofetil for DLE along with weekly blood tests to monitor something or other (brain freeze -apologies!). Has anyone...

Hiya Just been prescribed Mycophenolate mofetil for DLE along with weekly blood ...

Biri

•6 years ago

5 Replies

FEEL ALONE 😥😥😥

Feel useless helpless if my GP was more understanding i may not be this much pain & treatment would have started over 1year ago aw well what can i say just got...

Feel useless helpless if my GP was more understanding i may not be this much pai...

Naz2005

•6 years ago

14 Replies

OMG REALY IM FED UP

Went to see rehumo consultant they have increased my steriods to 25mg & put me on calcium tablets but i also disscussed it said something on my previous...

Went to see rehumo consultant they have increased my steriods to 25mg & put me o...

Naz2005

•6 years ago

7 Replies

LUPUS UK Supporters Survey 2018

It is very important to LUPUS UK that we listen closely to our members and supporters to ensure we are providing the best services we can and that our aims and...

It is very important to LUPUS UK that we listen closely to our members and suppo...

Paul_Howard

Partner•6 years ago

2 Replies

How do I request tests?

I've had a bad chest on and off for years. I've had bronchitis, coupe, neumonia, dozens of infections. When I'm bad Dr's say I have asthma but when I'm well...

I've had a bad chest on and off for years. I've had bronchitis, coupe, neumonia,...

cathylou

•6 years ago

17 Replies

Lupus and CKD Stage 3

I've had Lupus for 30 + years and recently told I have mild stage 3 CKD. I'm currently trying to take supplements & CBD oil, changed diet somewhat and...

I've had Lupus for 30 + years and recently told I have mild stage 3 CKD. I'm cur...

lyonness

•6 years ago

2 Replies

New SLE disease definition: a points tally based on 'ever had' criteria, without need for dsDNA (and maybe ANA) or overlapping symptoms!!!

"Until now, classification of systemic lupus erythematosus (SLE) was a yes-or-no decision" 😖 UPDATE: Paper being presented to ACR on Monday 22nd October to...

"Until now, classification of systemic lupus erythematosus (SLE) was a yes-or-no...

eekt

•6 years ago

27 Replies

Yet another 1 of those days ca...

Yet another 1 of those days cant be bothered off to bed pain to much so no point sitting stressing out even had meds dont think they helping 😥😥😥just want to...

Yet another 1 of those days cant be bothered off to bed pain to much so no point...

Naz2005

•6 years ago

2 Replies

Discoid lupus ..

Hi all, hope you’re all keeping okish. I’m about 6 months down my DLE path and have now been on hydroxychloroquine for approx 10 weeks. Initially I had one...

Hi all, hope you’re all keeping okish. I’m about 6 months down my DLE path and ...

RachelD1972

•6 years ago

8 Replies

Off to see the Wizard-the wizard of eyes and all things neuro

Hello my faithful fellow zebras and unicorns! I visited the wizard's castle today (research scientist by any other name) and given my latest results from his...

Hello my faithful fellow zebras and unicorns! I visited the wizard's castle toda...

DRunnerchick

•6 years ago

3 Replies

Occupational health

So I had my OH appointment yesterday because work referred to me. The doc agreed with the things on my risk assessments. His thinks physio and using a...

So I had my OH appointment yesterday because work referred to me. The doc agree...

LouLamb

•6 years ago

29 Replies

Lupus results totally confused!

I am totally confused with these recent results!: Positive DRVVT and SCT in October 2017 with borderline CT result in November 2016. On repeat in January...

I am totally confused with these recent results!: Positive DRVVT and SCT in Oc...

balamuti

•6 years ago

1 Reply

BAD MORNING

Yet another morning in pain dont know how im goin to get through the day need to attend family funeral hope everything goes ok . How is everyone??? Dont think...

Yet another morning in pain dont know how im goin to get through the day need to...

Naz2005

•6 years ago

7 Replies

increased pulse rate and steroids!!!

I have been taking steroids for some time now, I dragged myself to the doctors yesterday as I feel I should be being monitored. My doctor is sending me for an...

I have been taking steroids for some time now, I dragged myself to the doctors y...

Lisalou19

•6 years ago

8 Replies

WHATS NORMAL 🤦🏻‍♀️🤦🏻‍♀️🤦🏻‍♀️

Dry mouth crackling chest fatigue joints aches & pain hair loss facial rash useless all because of LUPUS SLE taken my everything away my life 😥😥😥

Dry mouth crackling chest fatigue joints aches & pain hair loss facial rash usel...

Naz2005

•6 years ago

5 Replies

Burning stinging skin

Hi everyone 😀 Does anyone have trouble with their digestive system IBS ? I have been put on a fodmap and just wondered if any if you lovely people have tried...

Hi everyone 😀 Does anyone have trouble with their digestive system IBS ? I have...

ftjftj63

•6 years ago

7 Replies

Thought I'd be brave and share this! I hope it evokes some commonly shared feelings...I’ve posted it once before but took it down!

The Butterfly and The Hurricane Look how she glows! Colours radiating! Wings proudly displaying a lifetime of scars from unspoken wars, they mingle within...

The Butterfly and The Hurricane Look how she glows! Colours radiating! Wings p...

Serser

•6 years ago

28 Replies

Awaiting pip acknowledgement

Hi, It’s been 5 weeks since I sent my Pip application form in, all filled out and sent recorded delivery. I haven’t heard anything back. Am I supposed to...

Hi, It’s been 5 weeks since I sent my Pip application form in, all filled out an...

LilyMistri2

•6 years ago

4 Replies

Posts - LUPUS UK | HealthUnlocked

LUPUS UK

All posts for October 2018

Some things that have helped relieve my symptoms

Reduced steroids finally but for how long!??!!!

Help with how I’m feeling

Finally a diagnosis we think

Hydroxychlorquine

"I'm fine in the mornings, but by the afternoon the fatigue really kicks in"...it's remarkable how the brain works: A BBC article and audio

Do I have lupus

New Symptoms

Flu vaccine shortage

Hello Everyone!

THANK YOU EVERYONE

Lupus anticoagulant

Mycophenolate mofetil prescribed for DLE

FEEL ALONE 😥😥😥

OMG REALY IM FED UP

LUPUS UK Supporters Survey 2018

How do I request tests?

Lupus and CKD Stage 3

New SLE disease definition: a points tally based on 'ever had' criteria, without need for dsDNA (and maybe ANA) or overlapping symptoms!!!

Yet another 1 of those days ca...

Discoid lupus ..

Off to see the Wizard-the wizard of eyes and all things neuro

Occupational health

Lupus results totally confused!

BAD MORNING

increased pulse rate and steroids!!!

WHATS NORMAL 🤦🏻‍♀️🤦🏻‍♀️🤦🏻‍♀️

Burning stinging skin

Thought I'd be brave and share this! I hope it evokes some commonly shared feelings...I’ve posted it once before but took it down!

Awaiting pip acknowledgement

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