Posts - LUPUS UK | HealthUnlocked

LUPUS UK

31,744 members • 28,102 posts

All posts for July 2023

Newly diagnosed

Hi All, I've just joined this group looking to educate myself following a recent 2nd positive lupus test. I am waiting for a pheumatology appointment but no...

Hi All, I've just joined this group looking to educate myself following a recent...

Autolupus

•10 months ago

4 Replies

False negative ana?

hi, never posted on anything like this before but you all look so nice. I am 39. I developed an unprovoked DVT at the age of 16 had another when I was 19. Have...

hi, never posted on anything like this before but you all look so nice. I am 39....

Flakeyy

•10 months ago

33 Replies

A lot has happened

Hi all, It's been a crazy ride the last well I'd say 6 months. Back in Feb I went to A & E with pain on my right side where my ribs were. After a lot of...

Hi all, It's been a crazy ride the last well I'd say 6 months. Back in Feb I we...

LouLamb

•10 months ago

22 Replies

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Survey on problems with getting hydroxychloroquine

Have you had any problems getting hydroxychloroquine or has your pharmacist said they cannot order a specific version for you? We’re collecting information...

Have you had any problems getting hydroxychloroquine or has your pharmacist said...

Debbie_kinsey

Administrator•10 months ago

17 Replies

Zentiva.....again:(

Hello lupies. I have read that the shortage of Zentiva is over and that its available once more. I went to Lloyds pharmacy as usual and the pharmacist said...

Hello lupies. I have read that the shortage of Zentiva is over and that its ava...

kt11

•10 months ago

3 Replies

Zentiva shortages still?!

is anyone else still not getting Zentiva hydroxychloroquine? I have used an independent pharmacy who are absolutely on the ball but have been unable to fulfil...

is anyone else still not getting Zentiva hydroxychloroquine? I have used an inde...

cobsie

•10 months ago

24 Replies

high amyloid??

Hiya, hope everyone is doing well! I have for the last 2 years had a lot of symptoms that fit lupus ones…joint pain, photosensitive rashes, mouth ulcers hair...

Hiya, hope everyone is doing well! I have for the last 2 years had a lot of sym...

Agt12

•10 months ago

1 Reply

Free online seminar about brain fog and fatigue on Wed, 26th July from 10am-11am

NIHR Manchester Biomedical Research Centre are hosting a seminar on Wed, 26th July on 'Exploring the fog: Unravelling the link between cognitive function and...

NIHR Manchester Biomedical Research Centre are hosting a seminar on Wed, 26th Ju...

Chanpreet_Walia

LUPUS UK•10 months ago

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Contribute your story to the Covid-19 Inquiry

Every Story Matters is your chance to share your experience of the pandemic with the UK Covid-19 Inquiry. Every story and experience is valuable in shaping the...

Every Story Matters is your chance to share your experience of the pandemic with...

Debbie_kinsey

Administrator•10 months ago

6 Replies

Exercise and fatigue

Hello Lupie friends, Around 2 years ago I told my Rheumy that I was really struggling with fatigue and finding the 3 classes I was doing weekly at Bannatynes...

Hello Lupie friends, Around 2 years ago I told my Rheumy that I was really stru...

Spotty-ewe

•10 months ago

109 Replies

Running with autoimmune disease

Hi, sorry I have looked but can't find a page about autoimmune diseases/connective tissue diseases so I hope it's OK to post here? I joined when I suspected I...

Hi, sorry I have looked but can't find a page about autoimmune diseases/connecti...

AcheyAnnie

•10 months ago

18 Replies

7 months and still no medication...

Hello all, I got diagnosed with SLE back in October 2022 after a bad flare up and was put on hydroxychloroquine. I had an allergic reaction to it in December...

Hello all, I got diagnosed with SLE back in October 2022 after a bad flare up an...

CorlaRo

•10 months ago

8 Replies

Hello everyone!

My name is Michaella and I am the new Volunteer Coordinator for LUPUS UK. Before joining the wonderful lupus family I worked in offices carrying out various...

My name is Michaella and I am the new Volunteer Coordinator for LUPUS UK. Befor...

michaellasmith

Administrator•10 months ago

5 Replies

Update - starting prednisolone & mycophenolate - any tips?

I'm hoping that this makes the beginning of the end for my 2 year long flare. Consultant has changed diagnosis back to Lupus and added POTs to diagnosis....

I'm hoping that this makes the beginning of the end for my 2 year long flare. ...

Beau2016

•10 months ago

2 Replies

Peripheral Neuropathy & Driving

Hi, Community. I am 72 and have Lupus, Raynaud's, Erythromelalgia, Peripheral Neuropathy and Muscular Dystrophy, Type 1. Neurophysiological testing in...

Hi, Community. I am 72 and have Lupus, Raynaud's, Erythromelalgia, Peripheral...

skylark15

•10 months ago

4 Replies

RA OR LUPUS

Morning, sorry for the long post :) I am new on here and awaiting an appointment from Rheumatology after some blood results. My doctor suggested Rheumatoid...

Morning, sorry for the long post :) I am new on here and awaiting an appointm...

jsacha33

•10 months ago

9 Replies

Numb foot

I'm getting numb foot and ankle this morning with this twisty knee.Also the better leg ligaments at hip are sore, it's like having ligaments that are not...

I'm getting numb foot and ankle this morning with this twisty knee.Also the bett...

minka

•10 months ago

5 Replies

sharing a Hot Tub ok with Lupus

Hi I’ve had Lupus for 30+ years now diagnosed with Hasimoto 6yrs ago. Read somewhere a long time ago thatLupus suffered should avoid a shared Hot tub due to...

Hi I’ve had Lupus for 30+ years now diagnosed with Hasimoto 6yrs ago. Read somew...

LittleWoodChip

•10 months ago

9 Replies

Help us understand the financial advice needs of people with lupus

We would be grateful if you could complete our anonymous, 5-minute survey on financial advice needs to help us work with NLP Financial Management to provide...

We would be grateful if you could complete our anonymous, 5-minute survey on fin...

Debbie_kinsey

Administrator•10 months ago

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AVN of right femoral head

Has anyone had AVN (avascular necrosis) of right femoral head or other joints? I have had Mixed Connective Tissue Disease since 2016 that mainly affects...

Has anyone had AVN (avascular necrosis) of right femoral head or other joints? ...

Krock1

•10 months ago

3 Replies

Corn or Wart

Hi, 2nd attempt at sending this but as you can see from the image I have something on my foot. And I can't get a straight answer on what it is. It's either a...

Hi, 2nd attempt at sending this but as you can see from the image I have somethi...

HantsMan

•10 months ago

12 Replies

Internal tremble - frequency and cause

Since having covid in 2020 there are times when I suddenly feel trembly inside. I feel less steady, movement and sensation can be affected slightly. Nobody...

Since having covid in 2020 there are times when I suddenly feel trembly inside. ...

StriatedCaracara

•10 months ago

10 Replies

Advice

I have the results from my Private healthcare butI haveto , have fortnightly bloodtests with the medication I'll need ,the cost is out of reach.My GP refuses...

I have the results from my Private healthcare butI haveto , have fortnightly blo...

Peachys

•10 months ago

6 Replies

Eye Bag/Eye Mask

Hello my dear Lupus Warriors To bring you good vibes with my Optician's recommendation yesterday - Eye Bag/Eye Mask. Boots had on offer £10.99 and it works a...

Hello my dear Lupus Warriors To bring you good vibes with my Optician's recomme...

Energy14

•10 months ago

22 Replies

Chest CT scan/Myositis bloods/MRI - right knee Quadricep Tendon Rupture Report update

Hello my dear Lupus warriors ❤️ Just to give an update, actually Tiggywoos wrote quick question about Anti-OJ autoantibodies 6 days ago. I thought to do new...

Hello my dear Lupus warriors ❤️ Just to give an update, actually Tiggywoos wrote...

Energy14

•10 months ago

2 Replies

Surgery and Recovery/any advice?

Hello Everyone. I became dizzy last week and slam dunked on the kitchen floor. My shoulder took the hit. I tore my rotator cuff very badly and so after...

Hello Everyone. I became dizzy last week and slam dunked on the kitchen floor. ...

MrsMarigold

•10 months ago

12 Replies

Lupus Flareup

Hello everyone, haven't posted in a long while, I have a perpetual left deep left pelvic hip pain don't know if it's fibromyalgia or sciatic nerve. Recently I...

Hello everyone, haven't posted in a long while, I have a perpetual left deep lef...

overdrive67

•10 months ago

3 Replies

Need to be believed

Good morning. I haven't posted before. But here goes.In 2013 I was diagnosed with hashimotos. I also had granuloma anulare and am celiac. I got sorted on...

Good morning. I haven't posted before. But here goes.In 2013 I was diagnosed wit...

Beth22liz22

•10 months ago

21 Replies

Problem symptoms

Hi, has anyone experienced, continual headaches, which feels like a tight band around the head, and continual thudding noise, (pulse) which is worse at night,...

Hi, has anyone experienced, continual headaches, which feels like a tight band a...

frog

•10 months ago

4 Replies

The way to access COVID-19 treatments has changed

The way to access COVID-19 treatments has changed, and is now different in the different nations of the UK. Check our article to find out what the process is...

The way to access COVID-19 treatments has changed, and is now different in the d...

Debbie_kinsey

Administrator•10 months ago

Be the first to reply

Posts - LUPUS UK | HealthUnlocked

LUPUS UK

All posts for July 2023

Newly diagnosed

False negative ana?

A lot has happened

Survey on problems with getting hydroxychloroquine

Zentiva.....again:(

Zentiva shortages still?!

high amyloid??

Free online seminar about brain fog and fatigue on Wed, 26th July from 10am-11am

Contribute your story to the Covid-19 Inquiry

Exercise and fatigue

Running with autoimmune disease

7 months and still no medication...

Hello everyone!

Update - starting prednisolone & mycophenolate - any tips?

Peripheral Neuropathy & Driving

RA OR LUPUS

Numb foot

sharing a Hot Tub ok with Lupus

Help us understand the financial advice needs of people with lupus

AVN of right femoral head

Corn or Wart

Internal tremble - frequency and cause

Advice

Eye Bag/Eye Mask

Chest CT scan/Myositis bloods/MRI - right knee Quadricep Tendon Rupture Report update

Surgery and Recovery/any advice?

Lupus Flareup

Need to be believed

Problem symptoms

The way to access COVID-19 treatments has changed

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