Posts - LUPUS UK | HealthUnlocked

LUPUS UK

31,707 members • 28,077 posts

All posts for March 2014

Just joined

I. Have lupus 17 years discoid but its advanced to sle, i also have vasculitis and small fibre neuropathy, is there anyone here from northern ireland

I. Have lupus 17 years discoid but its advanced to sle, i also have vasculitis a...

biddy75

•10 years ago

16 Replies

lupus with an ileostomy and supra pubic catheter

hi just wondered if any of you have lupus and have an ileostomy or supra pubic catheter. i have lupus and both of these and i am eager to speak to anyone the...

hi just wondered if any of you have lupus and have an ileostomy or supra pubic c...

raelene

•10 years ago

3 Replies

I have my first lung function test on Thursday. Can anyone shed any light on what it involves? I am asthmatic, so will that effect it too?

I have subacute cutaneous lupus, which I believe is a sub group of Discoid Lupus?! Diagnosed Nov 2013. Just a little anxious, so any info would be helpful.

I have subacute cutaneous lupus, which I believe is a sub group of Discoid Lupus...

Wendy39

•10 years ago

5 Replies

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Facial/Jaw Pain

Hello everyone, Does anyone suffer from jaw/facial pains? It feels like what I am assuming that lock jaw would feel like. It doesn't feel like spasms but it is...

Hello everyone, Does anyone suffer from jaw/facial pains? It feels like what I a...

Blackbutterfly74

•10 years ago

11 Replies

Cambridge ‘Coffee & Chat’ Meeting

Saturday - 5th April - from 11.00am at the Sunflower Restaurant, Scotsdale's Garden Centre, Great Shelford, Cambridge. A chance to meet other people who have...

Saturday - 5th April - from 11.00am at the Sunflower Restaurant, Scotsdale's Gar...

Paul_Howard

Partner•10 years ago

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My son skydaive for lupus uk..

Hi guys my son steven mc carroll is doing a 10,000 feet tandem skydive to help raise funds and awarness for lupus uk,, any donation no matter how small wld be...

Hi guys my son steven mc carroll is doing a 10,000 feet tandem skydive to help r...

mojo

•10 years ago

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March's Blog (Part 2) - Jade's experience of studying with lupus

Hi everyone. The second part of this month's blog has been written by Jade. She has shared her experiences of studying whilst living with lupus. Thank you...

Hi everyone. The second part of this month's blog has been written by Jade. She ...

Paul_Howard

Partner•10 years ago

1 Reply

Pregnancy and SLE, Nephritis

Hi all, hope everyone is doing and feeling well today. I was wondering if anyone here has SLE, Lupus Nephritis and has had children? I've been reading up on...

Hi all, hope everyone is doing and feeling well today. I was wondering if anyone...

Anne2012

•10 years ago

3 Replies

Does anyone else have lupus and hypermobility syndrome?

Hi all :) I have had a variety of autoimmune diseases over the last ten years (I was diagnosed with MCTD originally but after four years I was told this had...

Hi all :) I have had a variety of autoimmune diseases over the last ten years ...

stephaniemae

•10 years ago

7 Replies

Eye

Wheñ I'm very tied my right eye goes really red like I have conjunctivitis & wonder if anyone has had this happen to them. I'm going to an apt today at St...

Wheñ I'm very tied my right eye goes really red like I have conjunctivitis & won...

tenn

•10 years ago

4 Replies

Peticial rash on shins - significant? APS or SLE related?

I have been flaring this last week and had my first malar rash on my face and antidepressants not controlling TMJ pain as they were. More blood in urine too....

I have been flaring this last week and had my first malar rash on my face and an...

Bonnie39

•10 years ago

5 Replies

APS, "on the job" training!

Anything that I may share, is coming from a person (and loving wife) that has lived through-a ruptured cerebral aneurysm, two strokes (one of each side of my...

Anything that I may share, is coming from a person (and loving wife) that has li...

Lhrlovesmar

•10 years ago

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Active B12 private testing results

Hi all, I really appreciate your comments and feedback. I will post on the lupus site too as I have a number of AI conditions the symptoms of which I cannot...

Hi all, I really appreciate your comments and feedback. I will post on the lupu...

bestbuddy

•10 years ago

2 Replies

Has anyone ever suffered from chronic abdominal and internal pain after sex?

I am newly diagnosed with Lupus and am still waiting for my hospital apt to decide what management I need. I was intimate for the first time in a year last...

I am newly diagnosed with Lupus and am still waiting for my hospital apt to deci...

Yoshi1606

•10 years ago

4 Replies

RBH-104

Has anyone heard of this drug? I believe it has shown promising results for Lupus and is going be tried on other autoimmune diseases. From what I can gather,...

Has anyone heard of this drug? I believe it has shown promising results for Lupu...

Melinda

•10 years ago

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Hi, doctor says I would benefit from a g.f diet, blood test positive but not enough he said. I have ulcers/dry mouth and terrible wind!!!!

Wind, ulcers, dry mouth and rashes.

lizzygale

•10 years ago

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Hi paul is this all you need re skydive...

LUPUS UK Charity Registration No 1051610 Page Owner: steven mc carroll | Event: Tandem Skydive | Event Date: 10/05/2014

LUPUS UK Charity Registration No 1051610 Page Owner: steven mc carroll | Event...

mojo

•10 years ago

5 Replies

Hi all I have not been diagnosed with lupus but I have had fibro for 18yrs my face keeps going sore on one side and I feel like imhave ear a

Ache my face is very tender to the touch cud this be a symptom of lupus xx

steph18toto

•10 years ago

2 Replies

raynauds possible Vasculitis or blocked arteries

I have all two of the above and recently had an ultrasound as I and can hardly walk and driving is becoming more difficult to bend my feet My first class...

I have all two of the above and recently had an ultrasound as I and can hardly ...

notoverthehill

•10 years ago

9 Replies

March's Blog (Part 1) - Katie's experience of studying with lupus

Hi everyone. The first part of this month's blog has been written by Katie. She has shared her experiences of studying whilst living with lupus. Thank you...

Hi everyone. The first part of this month's blog has been written by Katie. She ...

Paul_Howard

Partner•10 years ago

8 Replies

Re skydive for charity

Hi paul my son steven is doing a sponcered skydive on the 10th may, for lupus uk, dont know how to post the link, he is doing it through doitforcharity.... any...

Hi paul my son steven is doing a sponcered skydive on the 10th may, for lupus uk...

mojo

•10 years ago

3 Replies

B12 injection in the bone? can some give advice

I have been having B12 for years due to pernicious anemia usually they are in the muscle the new health worker is insistent it must be injected into the bone...

I have been having B12 for years due to pernicious anemia usually they are in th...

yvetteh

•10 years ago

4 Replies

Routine blood testing abroad (Italy) for Mycophenolate Mofetil drug?

I shall shortly be moving to Italy to work on a campsite for the summer, as I have SLE and have recently been prescribed Myfenax my rheumatologist has...

I shall shortly be moving to Italy to work on a campsite for the summer, as I ha...

zoerae25

•10 years ago

3 Replies

Anyone had problems with mycophenolate?

I have read posts from people who have found this very useful and not had issues with it, but has anyone had problems because I feel I'm not tolerating it...

I have read posts from people who have found this very useful and not had issues...

alice_sportyauthor

•10 years ago

5 Replies

I am male, aged 53. I've had varying symptoms over the past 2 years, starting with flu like, Renauds, fatigue, heart flutters, joint pain

Also side & back pain, kidney pain, headaches, sweats, eventually diagnosed AF from the heart flutter. But still getting back and chest pain (not severe),...

Also side & back pain, kidney pain, headaches, sweats, eventually diagnosed AF f...

pliddell

•10 years ago

9 Replies

HOME AND LOVE :)

Home and Love : Just Home and Love! the words are small Four little letters unto each; And yet you will not find in all The wide and gracious range of...

Home and Love : Just Home and Love! the words are small Four little letters u...

punnoose619

•10 years ago

2 Replies

I have this hand pain for over 12 years but just came to realize it is related to a condition -call MCTD Any advise?

Roza

•10 years ago

1 Reply

Metoject and muscle aches

Hi all I wanted to ask if anyone has had any problems with severe aching muscles (especially leg muscles) post metoject injection. I am in agony with my...

Hi all I wanted to ask if anyone has had any problems with severe aching muscle...

esky

•10 years ago

2 Replies

Is a high ANA meaningful on it's own, or is it only useful if you have other high markers on other autoimmune tests?

I have an ANA of 1:2560, does that just mean I have a high level of autoimmune inflammation? This was done by my doctor and she is referring me to a...

I have an ANA of 1:2560, does that just mean I have a high level of autoimmune i...

TeganSara

•10 years ago

9 Replies

Does Lupus define your life?

Hi! I'm Katie and I haven't been on this blog very much at all since being diagnosed with Lupus as I was angry and 16 and didn't want to associate myself with...

Hi! I'm Katie and I haven't been on this blog very much at all since being diagn...

lemoncheese

•10 years ago

13 Replies

Posts - LUPUS UK | HealthUnlocked

LUPUS UK

All posts for March 2014

Just joined

lupus with an ileostomy and supra pubic catheter

I have my first lung function test on Thursday. Can anyone shed any light on what it involves? I am asthmatic, so will that effect it too?

Facial/Jaw Pain

Cambridge ‘Coffee & Chat’ Meeting

My son skydaive for lupus uk..

March's Blog (Part 2) - Jade's experience of studying with lupus

Pregnancy and SLE, Nephritis

Does anyone else have lupus and hypermobility syndrome?

Eye

Peticial rash on shins - significant? APS or SLE related?

APS, "on the job" training!

Active B12 private testing results

Has anyone ever suffered from chronic abdominal and internal pain after sex?

RBH-104

Hi, doctor says I would benefit from a g.f diet, blood test positive but not enough he said. I have ulcers/dry mouth and terrible wind!!!!

Hi paul is this all you need re skydive...

Hi all I have not been diagnosed with lupus but I have had fibro for 18yrs my face keeps going sore on one side and I feel like imhave ear a

raynauds possible Vasculitis or blocked arteries

March's Blog (Part 1) - Katie's experience of studying with lupus

Re skydive for charity

B12 injection in the bone? can some give advice

Routine blood testing abroad (Italy) for Mycophenolate Mofetil drug?

Anyone had problems with mycophenolate?

I am male, aged 53. I've had varying symptoms over the past 2 years, starting with flu like, Renauds, fatigue, heart flutters, joint pain

HOME AND LOVE :)

I have this hand pain for over 12 years but just came to realize it is related to a condition -call MCTD Any advise?

Metoject and muscle aches

Is a high ANA meaningful on it's own, or is it only useful if you have other high markers on other autoimmune tests?

Does Lupus define your life?

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