Posts - LUPUS UK | HealthUnlocked

LUPUS UK

31,924 members • 28,250 posts

All posts for June 2018

Lupus Friends? Norwich?

Hey, everyone, I'm Amie, I'm 25 and I was diagnosed after having to drop out of university from symptoms of the disease in 2013. I've not met anyone with this...

Hey, everyone, I'm Amie, I'm 25 and I was diagnosed after having to drop out of ...

amelialavellan

•6 years ago

5 Replies

Worries,from family

My step dad came home and said he had another appointment with lupus doctor in three months ,but he might not make his appointment, but would probably see him...

My step dad came home and said he had another appointment with lupus doctor in t...

DinkDink

•6 years ago

1 Reply

The therapy of saying "Hello" and telling my story. Wolf as strength not enemy, art as therapy, time for positive change, healing :)

Hi everyone, I am a mental health use who was diagnosed with Lupus (SLE) last month (May 2018), after experiencing symptoms for 10 years + such as fatigue,...

Hi everyone, I am a mental health use who was diagnosed with Lupus (SLE) last mo...

Serser

•6 years ago

15 Replies

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HINTS

what seems to work for me 1.solotalol 2. steroids 3. cyclophosamide 4. plaquinel . But we are all different and we all have different versions of lupus. Mine...

what seems to work for me 1.solotalol 2. steroids 3. cyclophosamide 4. plaquinel...

JOWE

•6 years ago

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Update on ciclosporin eye drops

I had an appointment at the eye clinic yesterday, after taking ciclosporin for three months. My doctor reports that my corneas look much better than they did,...

I had an appointment at the eye clinic yesterday, after taking ciclosporin for t...

creaky

•6 years ago

3 Replies

Dd is 20

My daughter is 20.. she is diagnosed with ASD and is in the process of her diagnosis for Lupus. I am fearful for her..I know she has it... (her Paternal...

My daughter is 20.. she is diagnosed with ASD and is in the process of her diagn...

Gailjam

•6 years ago

2 Replies

Ciclosporne and rheumatology update *

Hi, So I saw my rheumy nurse who has prescribed me 25mg of ciclosporne day and night and then up to 50mg day and night after 4 weeks. Hopefully this works and...

Hi, So I saw my rheumy nurse who has prescribed me 25mg of ciclosporne day and ...

imzi

•6 years ago

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Zenvita hydroxychloroquine

Today I tried to get my prescription for zenvita hydroxychloroquine and was told they no longer can supply me.but I could have a generic quinoric instead. But...

Today I tried to get my prescription for zenvita hydroxychloroquine and was tol...

Lucymay

•6 years ago

8 Replies

Just general question

Hi my name is Kathleen and wanted to link with others with lupus. I was diagnosed 20 odd years ago after losing pregnancies and not being able to carry a baby...

Hi my name is Kathleen and wanted to link with others with lupus. I was diagnos...

tiactrpy

•6 years ago

2 Replies

Videos from the North Wales Lupus Information Day (12/05/2018)

On Saturday May 12th 2018, the North Wales Lupus Group hosted the LUPUS UK AGM and Information Day in Llandudno. The event was well attended with approximately...

On Saturday May 12th 2018, the North Wales Lupus Group hosted the LUPUS UK AGM a...

Paul_Howard

Partner•6 years ago

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Exercising during a flare, what do you recommend?

Hi All, I was very recently diagnosed with subacute cutaneous lupus. Still confirming if I also have SLE, symptoms suggest so. On a good day not long a go, I...

Hi All, I was very recently diagnosed with subacute cutaneous lupus. Still confi...

Carolinep37

•6 years ago

3 Replies

Weight gain and Lupus

Just wondering if anyone has had significant weight gain with Lupus. I really have no appetite most of the time, so eat very little but gained 25 lbs. Some...

Just wondering if anyone has had significant weight gain with Lupus. I really h...

Dreamva

•6 years ago

5 Replies

Help with diagnosis!

My psychological condition would be better if I could get a specific diagnosis.

My psychological condition would be better if I could get a specific diagnosis. ...

Burns9624

•6 years ago

3 Replies

Frustrated

I am new on here. Only diagnosis is autoimmune condition. By the time I get appts., my flare-ups go away. This has been going on for 4 years, now. In the last...

I am new on here. Only diagnosis is autoimmune condition. By the time I get appt...

Burns9624

•6 years ago

2 Replies

Do I have any options, single parent to 3, working part time and physically feel I can no longer cope with all this on top of illness

It’s very rare that I feel defeated, but today is one of those days. I feel unbearable, the day started stressful and it has not got any easier! I’m such a...

It’s very rare that I feel defeated, but today is one of those days. I feel unb...

Lisalou19

•6 years ago

1 Reply

Nurse call 🙄

So I missed my call from the rheumy nurse today , she had rang me why I was at work . I rang the desk and said unless she ring me in the next 45 minutes on my...

So I missed my call from the rheumy nurse today , she had rang me why I was at w...

LouLamb

•6 years ago

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Physio?

Has anyone here seen a physio for mobility issues? Did you need to find one with experience with AI/Lupus? Not having much luck finding one with that...

Has anyone here seen a physio for mobility issues? Did you need to find one with...

maye1

•6 years ago

21 Replies

If it rains, it pours.

Diagnosed with UCTD in January. Moved into our first proper home in March. Fiancé of 8 years left me in May. My health has declined massively. I currently...

Diagnosed with UCTD in January. Moved into our first proper home in March. Fianc...

eescvc

•6 years ago

5 Replies

June's Topic of the Month - Starting a New Treatment (We want to hear your tips and experiences)

Continuing on from our last topic of the month (which you can read at https://www.lupusuk.org.uk/coping-with-side-effects/), this month we will be discussing...

Continuing on from our last topic of the month (which you can read at https://ww...

Paul_Howard

Partner•6 years ago

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Health

So I've only been diagnosed almost a year now and throughout the entire year I've been in pain mostly everyday. I wanted to ask if most of you have remissions...

So I've only been diagnosed almost a year now and throughout the entire year I'v...

Stephanie0210

•6 years ago

3 Replies

Shaking hands

Tried doing a little sewing the ither day and got so frustrated gave up. Whenever I try to use my hands on defined work my hands shake like crazy, even using...

Tried doing a little sewing the ither day and got so frustrated gave up. Wheneve...

Bronn

•6 years ago

3 Replies

Want to volunteer but worried about being unreliable

I was a busy person, worked, raised a family, volunteered. Now I'm stuck at home wishing I could get out more. Recently a local organisation advertised for...

I was a busy person, worked, raised a family, volunteered. Now I'm stuck at home...

suemh2

•6 years ago

14 Replies

Avascular Necrosis

Hi. I'm being checked out for AVN (hip). I have a long history of being prescribed prednisone, have SLE and have had, still have pain and mobility problems,...

Hi. I'm being checked out for AVN (hip). I have a long history of being prescrib...

suemh2

•6 years ago

1 Reply

Rheumatoid Arthritis & Discoid Lupus ...

Hi everyone, hope you are all doing ok? I have had RA for 8 years and have recently been diagnosed with Discoid Lupus. I am currently on Leflunomide,...

Hi everyone, hope you are all doing ok? I have had RA for 8 years and have rece...

RachelD1972

•6 years ago

7 Replies

Ciclosporne, work, stress and tired 😭

Hi it’s me again, Sorry for ranting again I’m just going through a difficult few weeks. To begin with I have sle, raynauds, fibromyalgia, hypothyroidism,...

Hi it’s me again, Sorry for ranting again I’m just going through a difficult fe...

imzi

•6 years ago

5 Replies

ESA

PIP Home visit 02/05/2018 Went well. ESA Assessement 09/06/2018,lasted 15 minutes,only asked 3 questions on F50 form. Said I was breathless, &...

PIP Home visit 02/05/2018 Went well. ESA Assessement 09/06/2018,lasted 15 minute...

markfitz

•6 years ago

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Depression

I’ve been feeling really low couple of months now, saw my Gp yesterday did a test and it shows I’m suffering from server depression and anxiety, she’s given me...

I’ve been feeling really low couple of months now, saw my Gp yesterday did a tes...

Tash1987

•6 years ago

15 Replies

Am I crazy

It's so hard then people think your crazy I have both cases of flu this past yr at same time? Handled like a champ feeling blessed, outcome could of been...

It's so hard then people think your crazy I have both cases of flu this past yr ...

CAT717

•6 years ago

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Depression

I’ve been feeling low and sad for a very long time, went to my Gp and I’ve been told I have server depression and anxiety , I’ve been given sertraline 50 mg,,...

I’ve been feeling low and sad for a very long time, went to my Gp and I’ve been ...

Tash1987

•6 years ago

3 Replies

Watsu water massage.

Has anyone had a watsu water massage. I have SLE, EDS and chronic pain. I've heard its good but I am concerned about over stretching my joints and muscles......

Has anyone had a watsu water massage. I have SLE, EDS and chronic pain. I've hea...

happytulip

•6 years ago

1 Reply

Posts - LUPUS UK | HealthUnlocked

LUPUS UK

All posts for June 2018

Lupus Friends? Norwich?

Worries,from family

The therapy of saying "Hello" and telling my story. Wolf as strength not enemy, art as therapy, time for positive change, healing :)

HINTS

Update on ciclosporin eye drops

Dd is 20

Ciclosporne and rheumatology update *

Zenvita hydroxychloroquine

Just general question

Videos from the North Wales Lupus Information Day (12/05/2018)

Exercising during a flare, what do you recommend?

Weight gain and Lupus

Help with diagnosis!

Frustrated

Do I have any options, single parent to 3, working part time and physically feel I can no longer cope with all this on top of illness

Nurse call 🙄

Physio?

If it rains, it pours.

June's Topic of the Month - Starting a New Treatment (We want to hear your tips and experiences)

Health

Shaking hands

Want to volunteer but worried about being unreliable

Avascular Necrosis

Rheumatoid Arthritis & Discoid Lupus ...

Ciclosporne, work, stress and tired 😭

ESA

Depression

Am I crazy

Depression

Watsu water massage.

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