Posts - LUPUS UK | HealthUnlocked

LUPUS UK

31,744 members • 28,102 posts

All posts for June 2019

Frustrating

Hi all I’m getting very frustrated I had a positive lupus detected blood result and lots of Simptoms but I’m still told I don’t have active lupus because my...

Hi all I’m getting very frustrated I had a positive lupus detected blood result ...

Babyida

•5 years ago

5 Replies

UCTD AND MOUTH ULCERS

Hi i just wanted to know if any one suffers with reoccurring mouth abscess and decaying teeth

Hi i just wanted to know if any one suffers with reoccurring mouth abscess a...

Sade96

•5 years ago

1 Reply

apixaban for APS

I was put on apixaban by my respiratory doc nearly 2 years ago for sticky blood. according to my rheumy recent studies have shown that it is not working for...

I was put on apixaban by my respiratory doc nearly 2 years ago for sticky blood....

suzannah16

•5 years ago

22 Replies

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Interesting research: lupus and a new probiotic

Hello everyone, I found this abstract very interesting: https://www.fasebj.org/doi/abs/10.1096/fj.201900545RR The experiment involved mice, not humans, but it...

Hello everyone, I found this abstract very interesting: https://www.fasebj.org/d...

Paloma25

•5 years ago

6 Replies

Sharing My Recent News

When severe lupus attacked my liver and destroyed my spleen, it also created something called hepatic varices. For those who are not familiar, these are...

When severe lupus attacked my liver and destroyed my spleen, it also created som...

Lily77

•5 years ago

9 Replies

Inflamed neck muscles/weakness

Hi guys hope hope your all well x My neck has been a massive factor since this all started. My neck feels so weak and muscles are right neurologist said...

Hi guys hope hope your all well x My neck has been a massive factor since this ...

Buckley123

•5 years ago

16 Replies

Blue Badge

Thanks so much ....ill try CAB xxx Take care of yourselves.

Kriss53

•5 years ago

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Cancer and lupus

What do you do about squamous cell cancer on your lip

nanno

•5 years ago

1 Reply

Another London Hospital Appointment

Hey everyone, I went back to Guys hospital on Tuesday for the 2nd time. When I had gone in December the Dr there had planned to see me in 6 months and then...

Hey everyone, I went back to Guys hospital on Tuesday for the 2nd time. When I h...

LouLamb

•5 years ago

14 Replies

Kenalog cortisone Injection

I was diagnosed with Fibromyalgia in 2018 by my Rheumatologist after two visits. In November I asked for an appointment with the NHS physio team to help with...

I was diagnosed with Fibromyalgia in 2018 by my Rheumatologist after two visits...

Yellow-Petal

•5 years ago

7 Replies

Blue Badge

Trying to apply for blue badge....finding it so very hard to answer questions about mobility, chronic fatigue does not help! Feeling frustrated....Apart from...

Trying to apply for blue badge....finding it so very hard to answer questions ab...

Kriss53

•5 years ago

6 Replies

Not lupus now but dermatomyositis and overlap syndrome!

Morning, Does anyone on this group suffer with the above. My initial diagnosis was cutaneous lupus as it was my skin swollen and red and Patches on my body....

Morning, Does anyone on this group suffer with the above. My initial diagnosis ...

Woods01

•5 years ago

9 Replies

Strange finger?

Hi im hoping someone can help. I have woken this morning with my left middle finger swollen in the middle section. It looks bruised but I haven't done...

Hi im hoping someone can help. I have woken this morning with my left middle fi...

Nikkipool

•5 years ago

23 Replies

Diet?

Hi. Has anyone followed a specific diet that helps with SCLE? I'm really struggling to control it, any help/advice would be very much appreciated.

Hi. Has anyone followed a specific diet that helps with SCLE? I'm really struggl...

jinty56

•5 years ago

9 Replies

Lupus insurance

Hi. Recently diagnosed and need help. Has anyone been diagnosed a year after I bought a house so took critical illness insurance.

Hi. Recently diagnosed and need help. Has anyone been diagnosed a year after I ...

Nickysmith666

•5 years ago

4 Replies

Hair loss in August or September. Is this linked to the sun ?

I loose my hair around this time of year normally about every 2 years though sometimes more often sometimes every few years. I was out of the country for 7...

I loose my hair around this time of year normally about every 2 years though som...

Mozart12

•5 years ago

5 Replies

Update on procedures, info and MCAS questions

Hi all, Firstly, as some of you know, I was to have my bowel MRI on Monday. Well, I arrived, and was promptly asked to drink 2 litres of clear fluid over 45...

Hi all, Firstly, as some of you know, I was to have my bowel MRI on Monday. Well...

Georgie-girl

•5 years ago

41 Replies

Any advice would be really appreciated

Hello, I was diagnosed with lupus around 2 years ago. I usually manage my symptoms with my lifestyle and support from family and friends. Recently I have been...

Hello, I was diagnosed with lupus around 2 years ago. I usually manage my sympto...

EveryDayHappiness

•5 years ago

5 Replies

Weakness

I’ve got in touch with the rheumatologist ( about the weakness getting worst ) he just told me to up the dose of cortisone until he sees me on the 11 July , I...

I’ve got in touch with the rheumatologist ( about the weakness getting worst ) h...

Melaxx

•5 years ago

11 Replies

UCTD and progression

Hi everyone, I was just wondering if any others with UCTD could share their journey and whether any progression to another autoimmune disease has developed and...

Hi everyone, I was just wondering if any others with UCTD could share their jour...

Happy43

•5 years ago

44 Replies

One Day At A Time

Hello Everyone, it’s been a strange few weeks since I last wrote. I took all of your advice on board and called the hospital. My Rheumatologist increased my...

Hello Everyone, it’s been a strange few weeks since I last wrote. I took all of...

Crazy_Cat_Woman

•5 years ago

2 Replies

Posting this one again:):):):)

SMILE EVERYONE. needed a lift. Enjoy the Joy again. Peace, thestorm

thestorm

•5 years ago

4 Replies

Phased return to work. Limited capability. Tax credit advice anyone?

In a nutshell I’m currently in the process of a phased return to work for the remainder of my SSP entitlement. I’ve had to be honest due to fatigue and brain...

In a nutshell I’m currently in the process of a phased return to work for the r...

Lisalou19

•5 years ago

6 Replies

CBD for the pain of Erythromelalgia?

I am 68 and live in UK. I have lupus, Raynaud's, Erythromelalgia and peripheral neuropathy. The EM is getting steadily worse, with pain in my feet waking me...

I am 68 and live in UK. I have lupus, Raynaud's, Erythromelalgia and peripheral...

skylark15

•5 years ago

4 Replies

Bruises

Afternoon Everyone, Just popped on to see if anyone else bruises easily and they take a really long time to go? I was on holiday recently and noticed more the...

Afternoon Everyone, Just popped on to see if anyone else bruises easily and the...

Leenie0811

•5 years ago

20 Replies

Foot swelling, leg issues

Hey everyone, hope life is treating you all most kindly & gently, Still ongoing investigations... Some progress since my last post. Recently my ankle on...

Hey everyone, hope life is treating you all most kindly & gently, Still ongoin...

LauraMk30

•5 years ago

4 Replies

Sores back of throat

Hi guys I was Diagnosed with SLE exactly a year ago I’m on plaquenil ans methrotrexate and steroids but I keep getting recurring sores/ulcers on the back my of...

Hi guys I was Diagnosed with SLE exactly a year ago I’m on plaquenil ans methrot...

Sammymoat1986

•5 years ago

15 Replies

Have you ever refused treatment for lupus?

What would be a reason why someone would decide not to be treated for lupus? Is it ever realistic to manage lupus without treatment? What has been your...

What would be a reason why someone would decide not to be treated for lupus? Is ...

GhostfaceMcGee

•5 years ago

16 Replies

Connective Tissue Blood Test

Had a full spinal MRI on the 1st June, results are in, Dr now requested usual load of blood tests plus connective tissue blood test. Get results of MRI plus...

Had a full spinal MRI on the 1st June, results are in, Dr now requested usual lo...

Jhpc

•5 years ago

9 Replies

Reduction in Plaquinil

I am really struggling to get the correct answer I have taken Plaquenil for 30 years with no problems my consultant in the last 18 months has decided to reduce...

I am really struggling to get the correct answer I have taken Plaquenil for 30 y...

Gillyg

•5 years ago

10 Replies

Posts - LUPUS UK | HealthUnlocked

LUPUS UK

All posts for June 2019

Frustrating

UCTD AND MOUTH ULCERS

apixaban for APS

Interesting research: lupus and a new probiotic

Sharing My Recent News

Inflamed neck muscles/weakness

Blue Badge

Cancer and lupus

Another London Hospital Appointment

Kenalog cortisone Injection

Blue Badge

Not lupus now but dermatomyositis and overlap syndrome!

Strange finger?

Diet?

Lupus insurance

Hair loss in August or September. Is this linked to the sun ?

Update on procedures, info and MCAS questions

Any advice would be really appreciated

Weakness

UCTD and progression

One Day At A Time

Posting this one again:):):):)

Phased return to work. Limited capability. Tax credit advice anyone?

CBD for the pain of Erythromelalgia?

Bruises

Foot swelling, leg issues

Sores back of throat

Have you ever refused treatment for lupus?

Connective Tissue Blood Test

Reduction in Plaquinil

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