Posts - LUPUS UK | HealthUnlocked

LUPUS UK

31,856 members • 28,197 posts

All posts for July 2020

Sweat smells like ammonia

Hello to my fellow lupies! An update on neuro stuff.... still waiting to get IVIG set up. Have not been able to get in touch with neurologist since appt...

Hello to my fellow lupies! An update on neuro stuff.... still waiting to get I...

Jmiller623

•4 years ago

9 Replies

What’s causing my symptoms? Pred? Flare? Or something else?

I apologise in advance for the length of this post but i feel like i need to explain everything to make sure the right information is share to get an answer....

I apologise in advance for the length of this post but i feel like i need to exp...

Sandy1212

•4 years ago

4 Replies

P.P.E car kit complete

As I'm sure many of you will understand with brain fog it's easy to go out the door and forget your purse,the kids,the dog or even ones other half and now...

As I'm sure many of you will understand with brain fog it's easy to go out the d...

Spanielmadlady

•4 years ago

10 Replies

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Daily suncream

Morning, Can anyone suggest a daily suncream that I can put on like a moisturiser. At the moment I’m using the kids roll on Nivea one when I go out in the...

Morning, Can anyone suggest a daily suncream that I can put on like a moisturise...

Dreams2rememeber

•4 years ago

21 Replies

I’m new here.

Hi I have skin Skin Lupus for 3 yrs now without remission. I have tried lots of medications without success. On Methotexrate for 7 months now with lots of side...

Hi I have skin Skin Lupus for 3 yrs now without remission. I have tried lots of ...

Haired

•4 years ago

17 Replies

Diabetes and lupus? diagnosis

Hi - Hi everyone, Bex here - would love to hear your thoughts advice ideas please ...., I strongly suspect I have some form of lupus, having developed a...

Hi - Hi everyone, Bex here - would love to hear your thoughts advice ideas pleas...

bexsmith23

•4 years ago

4 Replies

Oral thrush?

Hello all, Hope you’re all keeping well and taking it easy 💚 I was just wondering if anyone else had had oral thrush with lupus? I was put on steroids around...

Hello all, Hope you’re all keeping well and taking it easy 💚 I was just wonder...

Cazza_dow

•4 years ago

14 Replies

C25k update

Just a quick update! I have now made it to week 9 of couch to 5k With only 3 runs left and not a bad pace too... Never been so proud of myself your kind words...

Just a quick update! I have now made it to week 9 of couch to 5k With only 3 run...

nikki25

•4 years ago

7 Replies

Swollen glands/dizziness four days after Rituximab?

I have just completed my first series of Rituximab for SLE. I had an allergic reaction during the first infusion but was ok after hydrocortisone and with a...

I have just completed my first series of Rituximab for SLE. I had an allergic re...

ShannonB

•4 years ago

4 Replies

A little advice please

Been out walking the dog & it’s around 21 degrees in Durham. About an hour after I get back I’ve come out in a cold sweat & I feel shaky & legs like jelly. I...

Been out walking the dog & it’s around 21 degrees in Durham. About an hour after...

Lou-876

•4 years ago

21 Replies

YA fiction quiz in aid of LUPUS UK by Non Pratt, author of Every Little Piece of My Heart, YA novel with a teenage character with lupus

The UK’s Young Adult Literature Convention (YALC), running online this weekend, has a quiz on Sunday evening that is raising funds for LUPUS UK. The quizmaster...

The UK’s Young Adult Literature Convention (YALC), running online this weekend, ...

Cathyan

•4 years ago

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Mojito cake 🧁

I made this cake yesterday- it’s a Mojito cake which I made few weeks ago and it tastes so delicious 😋 have a good weekend everyone x

I made this cake yesterday- it’s a Mojito cake which I made few weeks ago and it...

svfarmer

•4 years ago

15 Replies

Methotrexate, temperature and issues sleeping

Does anyone wake up in the early hours very hot and then can't get back to sleep for hours? I inject 22.5mg and usually I sleep ok but sometimes the above...

Does anyone wake up in the early hours very hot and then can't get back to sleep...

Kath1

•4 years ago

2 Replies

A new paper from the LUPUS UK HealthUnlocked Community Research Study has been published - Read it now!

Hi everyone, I am very pleased to announce that a paper from the research study conducted within this forum has now been published and is available to read...

Hi everyone, I am very pleased to announce that a paper from the research study ...

Paul_Howard

Partner•4 years ago

36 Replies

Anyone have dry or swollen eyes and can check this photo please/ advise on drops?

Hello, hope everyone as ok as possible. My eyes have been a bit dodgy for a while, most times the lupus has flared and I’ve been in hospital, they’ve been...

Hello, hope everyone as ok as possible. My eyes have been a bit dodgy for a whi...

Melba1

•4 years ago

19 Replies

Glad of your support

An early good morning to you all. I am grateful for everyone's help on here, even though it may take me a while at times to reply. I've been awake since...

An early good morning to you all. I am grateful for everyone's help on here, ev...

Bronn

•4 years ago

9 Replies

Stressed

I feel really restless, I don’t know why , I think all the stress of corona virus is catching up with me , all the worries about shielding , my elderly mother...

I feel really restless, I don’t know why , I think all the stress of corona viru...

Melaxx

•4 years ago

16 Replies

Lupus & Coronavirus (COVID-19) - UPDATED 23/07/2020

We've just published an update to our information and guidance about lupus and COVID-19 - https://www.lupusuk.org.uk/coronavirus This update...

We've just published an update to our information and guidance about lupus and C...

Paul_Howard

Partner•4 years ago

Be the first to reply

What is machine learning & how can it help to understand autoimmune disease - Free Virtual Event - 4th August 2020

UCL Rheumatology are hosting a free virtual event on 4th August 2020 to engage the public on how machine learning can be used in understanding autoimmune...

UCL Rheumatology are hosting a free virtual event on 4th August 2020 to engage t...

Paul_Howard

Partner•4 years ago

6 Replies

Diagnosed!!!

Hey so I'm new to this forum, but I would just like to announce that I've been officially diagnosed with lupus after a year of symptoms!!! I spoke with a...

Hey so I'm new to this forum, but I would just like to announce that I've been o...

nellie_4132

•4 years ago

22 Replies

Employers have changed my role and I'm worried I won't be able to do it due to my symptoms.

Hi, Today I received the job description for my new role and they have changed it completely from what was originally proposed. The original proposal was my...

Hi, Today I received the job description for my new role and they have changed i...

eescvc

•4 years ago

16 Replies

Rare Disease UK Patient Experience Survey 2020

Hi everyone, We would like to invite all members of this community who live in the UK to take part in this online survey. It is designed to capture the...

Hi everyone, We would like to invite all members of this community who live in t...

Paul_Howard

Partner•4 years ago

9 Replies

Depo Medrone 120mg IM and Mood

Hi All I had an injection of Depo Medrone almost 4 weeks ago and initially felt great but this week I’ve noticed my mood it all over the place! I’m anxious,...

Hi All I had an injection of Depo Medrone almost 4 weeks ago and initially felt ...

Aggie-UK

•4 years ago

1 Reply

Allergies? Not allergic, but get them? Is it Lupus causing it?

I have Lupus / APS / Sjrojens since 2006. Throughout this time I keep having random allergy attacks. I had allergy testing in 2012 and it all came back as...

I have Lupus / APS / Sjrojens since 2006. Throughout this time I keep having ran...

1dayatatime

•4 years ago

6 Replies

returning to work uncertainty

Hi all I hope that you are all well today. I have a quick question for the group. I was told to shield and am still doing so. However I am looking forward to...

Hi all I hope that you are all well today. I have a quick question for the group...

Mala23

•4 years ago

5 Replies

New precautionary measure against Covid 19

In case you can’t read the instructions above, here they are again. Horse manure may protect you from Coronavirus- Take fresh horse manure & rub your hands...

In case you can’t read the instructions above, here they are again. Horse manure...

Spotty-ewe

•4 years ago

41 Replies

Is my dizziness lupus related?

Today I woke up with dizziness, I couldn’t walk without nearly falling over. I called ambulance as I was on my own with my kids, I’ve had a lot of stress...

Today I woke up with dizziness, I couldn’t walk without nearly falling over. I c...

Carrie1988x

•4 years ago

12 Replies

VOLUNTEERS NEEDED: Review a Patient Information Sheet for forthcoming clinical drug trial

Hi everyone, I'm seeking three or four volunteers to review a Patient Information Sheet which will be provided to potential recruits for a new clinical drug...

Hi everyone, I'm seeking three or four volunteers to review a Patient Informatio...

Paul_Howard

Partner•4 years ago

3 Replies

Short online survey for people with lupus nephritis about a clinical trial proposal (link now working)

Hi everyone, I have another short online survey for people with a diagnosis of lupus nephritis (lupus affecting the kidneys). The link is working now. The...

Hi everyone, I have another short online survey for people with a diagnosis of l...

Paul_Howard

Partner•4 years ago

2 Replies

Alpaca and Baby Budgie Cheer for my Lupie Friends on Here!

Hello everyone, I thought I’d post this collage pic & a little story about kindness to hopefully bring some smiles to you all 😊. It was hubby’s birthday...

Hello everyone, I thought I’d post this collage pic & a little story about kindn...

Horsewhisper

•4 years ago

24 Replies

Posts - LUPUS UK | HealthUnlocked

LUPUS UK

All posts for July 2020

Sweat smells like ammonia

What’s causing my symptoms? Pred? Flare? Or something else?

P.P.E car kit complete

Daily suncream

I’m new here.

Diabetes and lupus? diagnosis

Oral thrush?

C25k update

Swollen glands/dizziness four days after Rituximab?

A little advice please

YA fiction quiz in aid of LUPUS UK by Non Pratt, author of Every Little Piece of My Heart, YA novel with a teenage character with lupus

Mojito cake 🧁

Methotrexate, temperature and issues sleeping

A new paper from the LUPUS UK HealthUnlocked Community Research Study has been published - Read it now!

Anyone have dry or swollen eyes and can check this photo please/ advise on drops?

Glad of your support

Stressed

Lupus & Coronavirus (COVID-19) - UPDATED 23/07/2020

What is machine learning & how can it help to understand autoimmune disease - Free Virtual Event - 4th August 2020

Diagnosed!!!

Employers have changed my role and I'm worried I won't be able to do it due to my symptoms.

Rare Disease UK Patient Experience Survey 2020

Depo Medrone 120mg IM and Mood

Allergies? Not allergic, but get them? Is it Lupus causing it?

returning to work uncertainty

New precautionary measure against Covid 19

Is my dizziness lupus related?

VOLUNTEERS NEEDED: Review a Patient Information Sheet for forthcoming clinical drug trial

Short online survey for people with lupus nephritis about a clinical trial proposal (link now working)

Alpaca and Baby Budgie Cheer for my Lupie Friends on Here!

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