Posts - LUPUS UK | HealthUnlocked

LUPUS UK

32,210 members•28,555 posts

All posts for February 2019

RANT ALERT!! Fobbed off and furious

So I had my 1st rheumatologist app on Thurs which I have been waiting for 3 months for. I have been keeping a daily log of all my symptoms and went prepared...

So I had my 1st rheumatologist app on Thurs which I have been waiting for 3 mont...

whiteyswifey

•6 years ago

34 Replies

Quick Sanity Check...Am I Missing Something...

Hi All During a recent rheumatology consultation, I was told (not in a nice way) that Azathioprine is not an immunosuppressant drug. Says it is on the Patient...

Hi All During a recent rheumatology consultation, I was told (not in a nice way)...

Foggyme

•6 years ago

65 Replies

Living well with SLE

Hi. I’m a 46 year old Physician diagnosed with SLE about 8 months ago. I’m doing really well on hydroxychloroquine. I’m passionate about living well despite a...

Hi. I’m a 46 year old Physician diagnosed with SLE about 8 months ago. I’m doing...

ForPsych73

•6 years ago

17 Replies

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Critical illness cover

My insurance only started covering lupus after I took it out and I was diagnosed. So I'm not covered but they said I have a disability cover Can anyone...

My insurance only started covering lupus after I took it out and I was diagnose...

Tre123

•6 years ago

19 Replies

Have just had a 2nd brain scan showing micro bleeds could this be linked to lupus and what happens next.

Hi just had a brain scan and the dr at my referral to the memory clinic mentioned there was a few micro bleeds and it was nothing to worry about. My previous...

Hi just had a brain scan and the dr at my referral to the memory clinic mentione...

Hidden

•6 years ago

11 Replies

Lupus like symptoms but not lupus according to rheumatologist

Hi I was back again seeing my rheumatologist. He has ruled out lupus and any kind of autoimmune disease. He now suspects joint hypermobilty and is referring me...

Hi I was back again seeing my rheumatologist. He has ruled out lupus and any kin...

Hidden

•6 years ago

10 Replies

Compromised immunity

My consultant has just increased my hydroxychloroquine to 400mg, within 2 weeks I have a stinking cold & now a sinus infection. Could this be because my immune...

My consultant has just increased my hydroxychloroquine to 400mg, within 2 weeks ...

Aurali

•6 years ago

11 Replies

Should have kept my 🤐

Hi all I said some weeks ago my meds are sorted and I’m having a good run started 2weeks ago with horrible night swets then my shoulders started to stiffen now...

Hi all I said some weeks ago my meds are sorted and I’m having a good run starte...

Ianrussell69

•6 years ago

12 Replies

Can we talk Proton Pump Inhibitors

I have taken Lansoprazole for a good 4 years for GERD Esophagitis, Grade A Gastritis and more recently Peptic Ulcers due to Aspirin. Aspirin was removed, and...

I have taken Lansoprazole for a good 4 years for GERD Esophagitis, Grade A Gastr...

LupusKaren

•6 years ago

25 Replies

What amount of protein in urine is normal?

Just putting my paperwork in order which covers most of my exhausting journey! Some bits are missing as I used to get so annoyed that yet another doctor wasn’t...

Just putting my paperwork in order which covers most of my exhausting journey! S...

Lisalou19

•6 years ago

5 Replies

No Consultant back up now

Hi Everyone Just briefly: Guys Hospital Rheumy has discharged me back to GP as nothing for a year under them has helped my symptoms. Diagnosis from them also...

Hi Everyone Just briefly: Guys Hospital Rheumy has discharged me back to GP as ...

Lin007

•6 years ago

11 Replies

Advice

Hi all. I thought here might be the best place to get some advice, really appreciate any help. I suspect I may have lupus mildly. The reason being is that over...

Hi all. I thought here might be the best place to get some advice, really apprec...

MrsNapoli

•6 years ago

6 Replies

Infusion

Has anyone tried Rituximab infusions has it helped any Problems ? What r the side effects like M worried After I read the side-effects more prone to...

Has anyone tried Rituximab infusions has it helped any Problems ? What r the s...

Mystik

•6 years ago

2 Replies

Advice for rheumatology appointment.

Hi everyone. I originally had a follow up appointment with my rheumatologist in may. After seeing my gp yesterday she wrote to him and got me an appointment...

Hi everyone. I originally had a follow up appointment with my rheumatologist in ...

Hidden

•6 years ago

2 Replies

Hi

I have just discovered some interesting symptoms that I have had over the decades. I wonder if lupus symptoms can change over the years. What has caught my...

I have just discovered some interesting symptoms that I have had over the decade...

Jazymay

•6 years ago

10 Replies

Pembrokeshire Lupus Support Group

Just a reminder that we have our first meeting of 2019 on Saturday morning, 10am-12 midday at Crundale Hall, Crundale near Haverfordwest. The hall can be...

Just a reminder that we have our first meeting of 2019 on Saturday morning, 10am...

Wendy39

•6 years ago

5 Replies

Scalp rash with lupus

Hi all, just a random question....does anyone else an itchy scalp rash with lupus? Thanks guys. 💕

Hi all, just a random question....does anyone else an itchy scalp rash with lupu...

Aurali

•6 years ago

11 Replies

another disorders add to my list

this Christmas was my second one in hospital Although I have to admit the nurses and staff did their best to make it as enjoyable as possible with lovely gifts...

this Christmas was my second one in hospital Although I have to admit the nurses...

notoverthehill

•6 years ago

1 Reply

Raynaurds on the news!

A small step but Raynaurds was on the news today, it's estimated 3 million people in the UK suffer from it. The lady from the Raynaurds chairty did breifly...

A small step but Raynaurds was on the news today, it's estimated 3 million peopl...

Penguintaz

•6 years ago

1 Reply

Esa

Hi Thank you all for your very helpful advice. I went into the lupus link on regarding applying for benefits. I followed all your advise Ihave contacted my...

Hi Thank you all for your very helpful advice. I went into the lupus link on reg...

Cal66

•6 years ago

2 Replies

Heart failure and kidney failure

Hi, A close friend of my be was diagnosed with lupus sle back in 2013, I think it had something to do with her pregnancy. Her health has been up and down...

Hi, A close friend of my be was diagnosed with lupus sle back in 2013, I think i...

Rayella

•6 years ago

7 Replies

Determined to get back to the sport I love!

Posting for Coco! This is me, 18 months ago, coming 3rd at the Archery GB UK Masters. I'm currently unable to compete to the level I did due to joint pain and...

Posting for Coco! This is me, 18 months ago, coming 3rd at the Archery GB UK Mas...

Justinealexx

•6 years ago

13 Replies

Nocturnal chills (aka rigors)

Probably a strange one, but does anyone get chills at night in bed, sort of like the old saying, someone walking over your grave? This has been quite...

Probably a strange one, but does anyone get chills at night in bed, sort of like...

LupusKaren

•6 years ago

15 Replies

Looking for help finding a private Lupus specialist

Hi can anyone recommend a good lupus specialist in or around the Edinburgh area? Looking for help and a second opinion. Private message me. Any help or...

Hi can anyone recommend a good lupus specialist in or around the Edinburgh area?...

Hidden

•6 years ago

4 Replies

Sjogrens confirmation.

Following my post here over a year ago, and to which Paul also emailed me, I was confirmed last December as being positive for Sjogrens and given a leaflet to...

Following my post here over a year ago, and to which Paul also emailed me, I wa...

EveWarwick

•6 years ago

20 Replies

cyclophosphamide infusion - side effects / experiences ?

Hi, I'm getting my first cyclophosphamide infusion tomorrow. What are side effects that you had experienced, just / a day / a week / a month after the...

Hi, I'm getting my first cyclophosphamide infusion tomorrow. What are side effe...

Hika

•6 years ago

6 Replies

Rapid progression cataract and Sjogren's

Hi. Looking for experiences of cataract with Sjogrens syndrome. I have a rapidly progressing cataract in my right eye, 3 prescription changes in my specs in 12...

Hi. Looking for experiences of cataract with Sjogrens syndrome. I have a rapidly...

Justinealexx

•6 years ago

23 Replies

Is this raynaud's?

I have been on nefedipine for a month now which helps a bit. But my right hand is still affected quite badly. The fingers swell and get painful and the skin...

I have been on nefedipine for a month now which helps a bit. But my right hand i...

Hidden

•6 years ago

32 Replies

Lupus treatment options advice please?

Does anyone know what treatment options are for lupus if Azathioprine plus prednisolone are not controlling disease activity? (V low c3 and c4, dsdna above...

Does anyone know what treatment options are for lupus if Azathioprine plus predn...

Andfiona

•6 years ago

7 Replies

Posts - LUPUS UK | HealthUnlocked

LUPUS UK

All posts for February 2019

RANT ALERT!! Fobbed off and furious

Quick Sanity Check...Am I Missing Something...

Living well with SLE

Critical illness cover

Have just had a 2nd brain scan showing micro bleeds could this be linked to lupus and what happens next.

Lupus like symptoms but not lupus according to rheumatologist

Compromised immunity

Should have kept my 🤐

More questions than answers.

Can we talk Proton Pump Inhibitors

What amount of protein in urine is normal?

No Consultant back up now

Advice

Infusion

Advice for rheumatology appointment.

Hi

Pembrokeshire Lupus Support Group

Scalp rash with lupus

another disorders add to my list

Raynaurds on the news!

Esa

Heart failure and kidney failure

Determined to get back to the sport I love!

Nocturnal chills (aka rigors)

Looking for help finding a private Lupus specialist

Sjogrens confirmation.

cyclophosphamide infusion - side effects / experiences ?

Rapid progression cataract and Sjogren's

Is this raynaud's?

Lupus treatment options advice please?

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