Posts - LUPUS UK | HealthUnlocked

LUPUS UK

31,744 members • 28,102 posts

All posts for May 2023

To much I did yesterday and boy am I paying

I did 12 miles in steps for total day In the warmer weather. I did a 1.9 in the morning then afternoon. Then helped wife wit garden and when to tip twice.At....

I did 12 miles in steps for total day In the warmer weather. I did a 1.9 in the ...

minka

•1 year ago

3 Replies

Private Specialist recommendations for the North West (UK)

Does anyone have a recommendation for a private specialist for arthritis? My mum is in terrible pain with her hips and the NHS wait is at least a year. We...

Does anyone have a recommendation for a private specialist for arthritis? My mum...

Bobbydoodle

•1 year ago

3 Replies

no diagnosis, help

hi, first of all I apologize if it is not written grammatically, I'm from Croatia. I am 26 years old.I have a rash on my face, nose, cheekbones, I picture...

hi, first of all I apologize if it is not written grammatically, I'm from Croati...

tea211

•1 year ago

12 Replies

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Me again

Hi all, Hope everyone is as well as can be 😊 Still not sure if I'm posting in the right place but you guys have always been so helpful 💕 Found out this...

Hi all, Hope everyone is as well as can be 😊 Still not sure if I'm posting in t...

Haylz2109

•1 year ago

10 Replies

Addenbrooke's Hospital

Hello my dear lupis 💜Is there anyone here who is being treated at Addenbrooke's Hospital for SLE or any CTD, UCTD who would like to share their experience?

Hello my dear lupis 💜Is there anyone here who is being treated at Addenbrooke's...

Naladog

•1 year ago

2 Replies

struggling with UCTD -advice needed re PIP

Hi all, I have really been struggling with UCTD. I have been on hydroxy for the last 3 plus years with no tangible benefits. The symptoms are constant,...

Hi all, I have really been struggling with UCTD. I have been on hydroxy for th...

April2018

•1 year ago

8 Replies

Study testing a lupus management app recruiting now

A new study is testing a lupus-management app and is looking for participants with lupus or rheumatoid arthritis. You can find more information about what it...

A new study is testing a lupus-management app and is looking for participants wi...

Debbie_kinsey

Administrator•1 year ago

1 Reply

APS misdiagnosis???

Hello, this is my first post here. My name is Lynn. Eleven years ago, after 2 late miscarriages (17 weeks) and several stroke like episodes I was diagnosed...

Hello, this is my first post here. My name is Lynn. Eleven years ago, after 2 l...

stillwaiting

•1 year ago

4 Replies

Another quick Zentiva update

We've updated our Zentiva information in our article here: https://www.lupusuk.org.uk/update-on-availability-of-zentiva-hydroxychloroquine/ Boots now have an...

We've updated our Zentiva information in our article here: https://www.lupusuk.o...

Debbie_kinsey

Administrator•1 year ago

8 Replies

Ramipril and Lupus

Hi, I'm wondering if anyone has experience ( good or bad) of taking Ramipril? I have high blood pressure, and I've been taking it for just over a month. I was...

Hi, I'm wondering if anyone has experience ( good or bad) of taking Ramipril? I...

Kathryn71

•1 year ago

18 Replies

Vulnerable or not?

Hello I have not posted on here for years, but reaching out for a bit of virtual hand holding. I was diagnosed with Lupus 7 years ago, end of 2021- 2022 was...

Hello I have not posted on here for years, but reaching out for a bit of virtual...

Beau2016

•1 year ago

25 Replies

Oral Thrush that does not go away

Hello everyone. I’m having a problem I need advice. Oral Thrush has been treated in the last 8 years off an on. Nystatin has lost effectiveness. Recently...

Hello everyone. I’m having a problem I need advice. Oral Thrush has been treate...

MrsMarigold

•1 year ago

15 Replies

Surgical Mesh !

I have been diagnosed with triple hernias in my groin area and one is femoral. I have received mixed and various answers to the situation from surgeons....

I have been diagnosed with triple hernias in my groin area and one is femoral. ...

Mozart12

•1 year ago

12 Replies

Student looking for patient perspective on light sensitivity to artificial light for dissertation

Hi all A student has gotten in touch and is looking for someone to answer a few questions over email about experience of light sensitivity to artificial...

Hi all A student has gotten in touch and is looking for someone to answer a few...

Debbie_kinsey

Administrator•1 year ago

4 Replies

itchy eyelashes

hi. I’m 6 or7 years diagnosed with lupus, I’ve had a few different treatments over those years., but this is not about treatment.I’ve had some terrible...

hi. I’m 6 or7 years diagnosed with lupus, I’ve had a few different treatments o...

joanneM200

•1 year ago

24 Replies

Covid

Hello lovely people, I hope you’re all feeling the best you can be? In the last 5 months I have only been in busy public places twice and both times...

Hello lovely people, I hope you’re all feeling the best you can be? In the last...

peppa

•1 year ago

31 Replies

Diagnosis - What to expect?

Hi, I was diagnosed with Sjogren's and auto immune hypothyroidism in 2017, currently taking 10mg methotrexate, I have suspected I have lupus too for a while,...

Hi, I was diagnosed with Sjogren's and auto immune hypothyroidism in 2017, curre...

MyAngels

•1 year ago

2 Replies

Hi barbara17

I live in Yorkshire and so far not had a problem in getting them. Looking at the posts though it seems quite a few people are now stopping this drug. I...

I live in Yorkshire and so far not had a problem in getting them. Looking at th...

Donnygirl

•1 year ago

4 Replies

Sjogrens biopsy

I was diagnosed with lupus 4 years ago, I have also been having a lot of symptoms of sjogrens, my Rhumatologist has done the usual bloods, and now is referring...

I was diagnosed with lupus 4 years ago, I have also been having a lot of symptom...

MrGrey1234

•1 year ago

17 Replies

Itchy skin

Morning, I have had bouts of itchy skin (with nothing to see )which I think comes with the territory of a lupus diagnosis . I am careful with soap powders ,...

Morning, I have had bouts of itchy skin (with nothing to see )which I think co...

Maddymay65

•1 year ago

27 Replies

Lupus awareness day

Has anyone received any leaflet or anything to be able to share and show people about lupus awareness day? It was when I was about to put information on fb...

Has anyone received any leaflet or anything to be able to share and show people ...

Cal66

•1 year ago

18 Replies

health insurance for going on holiday

can anyone help me with health insurance for going abroad

Liz2468

•1 year ago

5 Replies

Sjogrens syndrome hoarse voice

could anyone help, I gave primary sjogrens and take hydroxychlorquine, my voice has become really croaky, and advice woukd be appreciated.

could anyone help, I gave primary sjogrens and take hydroxychlorquine, my voice ...

Antipas

•1 year ago

10 Replies

Hylo Forte or Carbomer Gel?

I have been using hypromellose eye drops for a while because, particularly from Spring to autumn, I have itchy, gritty, dry eyes. This year they're worse than...

I have been using hypromellose eye drops for a while because, particularly from ...

Whippet_lady

•1 year ago

11 Replies

Diagnosis

Hi,I was diagnosed with cutaneous lupus 7years ago but have been feeling increasing unwell lately😔I have dry eyes,dry mouth and can get awful indigestion...

Hi,I was diagnosed with cutaneous lupus 7years ago but have been feeling increas...

Mayacat2

•1 year ago

4 Replies

Further update on Zentiva hydroxychloroquine

Hi all Apologies for not answering your questions on Zentiva last week, I was on leave and just got back today. I've updated our article on the availability...

Hi all Apologies for not answering your questions on Zentiva last week, I was o...

Debbie_kinsey

Administrator•1 year ago

18 Replies

NO Hydroxychloroquine

Hello. I had trouble getting all my hydroxy prescription last month and now I’ve been told there is NONE available. This pharmacy has been very good in...

Hello. I had trouble getting all my hydroxy prescription last month and now I’ve...

Barbara17

•1 year ago

41 Replies

snow on the roof but fire has not gone out

i say just because their is snow on the roof doesn't mean fire has gone out. its raining here and i so much wanted to do a 2 mile walk even though im climbing...

i say just because their is snow on the roof doesn't mean fire has gone out. it...

minka

•1 year ago

4 Replies

Health insurance for travel abroad

Hi everyone, Could you tell what travel health insurance provider you used which covers contracting covid too please? I’m traveling for the first time in 3...

Hi everyone, Could you tell what travel health insurance provider you used whic...

LilyMistri2

•1 year ago

10 Replies

LUPUS, activity and exercise

Hi everyone, I am 31 and was diagnosed with Lupus in September 2022 and started treatment which I've responded well and am currently feeling much better. Up...

Hi everyone, I am 31 and was diagnosed with Lupus in September 2022 and started ...

Blossom751

•1 year ago

14 Replies

Posts - LUPUS UK | HealthUnlocked

LUPUS UK

All posts for May 2023

To much I did yesterday and boy am I paying

Private Specialist recommendations for the North West (UK)

no diagnosis, help

Me again

Addenbrooke's Hospital

struggling with UCTD -advice needed re PIP

Study testing a lupus management app recruiting now

APS misdiagnosis???

Another quick Zentiva update

Ramipril and Lupus

Vulnerable or not?

Oral Thrush that does not go away

Surgical Mesh !

Student looking for patient perspective on light sensitivity to artificial light for dissertation

itchy eyelashes

Covid

Diagnosis - What to expect?

Hi barbara17

Sjogrens biopsy

Itchy skin

Lupus awareness day

health insurance for going on holiday

Sjogrens syndrome hoarse voice

Hylo Forte or Carbomer Gel?

Diagnosis

Further update on Zentiva hydroxychloroquine

NO Hydroxychloroquine

snow on the roof but fire has not gone out

Health insurance for travel abroad

LUPUS, activity and exercise

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