Posts - LUPUS UK | HealthUnlocked

LUPUS UK

31,928 members • 28,257 posts

All posts for March 2018

Just diagnosed with Sjogren's and the Hydroxychloroquine doesn't' like me

Hi everyone, I'm Steffie, 28 from London. After years of no one particularly caring that I'm allergic to the sun and just telling me i have "some form of...

Hi everyone, I'm Steffie, 28 from London. After years of no one particularly car...

Steffiedelrey

•6 years ago

25 Replies

So exhausted 😣

Been hit hard from the beast from the east. As an agency nurse went up to Dundee (68 miles away) last Wednesday for a 1:1 observation. Was supposed to go home...

Been hit hard from the beast from the east. As an agency nurse went up to Dundee...

CarolMcl

•6 years ago

20 Replies

Pain in the buttocks when sitting down

So the list of random things happening to me keeps increasing slowly but steadily. The newest thing is when i sit for long periods of time i fet this pain...

So the list of random things happening to me keeps increasing slowly but steadil...

Thereisalight

•6 years ago

4 Replies

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Azathioprine

Hi does anyone have problems with azathioprine? I've had lupus 8 years and take a number of medications then was put on azathioprine last year, 50mg to start...

Hi does anyone have problems with azathioprine? I've had lupus 8 years and take ...

Polly312

•6 years ago

26 Replies

Blood test results

Hi just wondering if you have any advice for me regarding negative ANA blood test - could I still have lupus ? I have many of the symptoms including the...

Hi just wondering if you have any advice for me regarding negative ANA blood te...

Angelamarston1963

•6 years ago

9 Replies

Frustrated and annoyed

Anyone else feel as though living with lupus gives them depression and loneliness? My family just don’t understand my condition and how much it effects my...

Anyone else feel as though living with lupus gives them depression and lonelines...

imzi

•6 years ago

7 Replies

A few wee facts from Alder Hey

I often visit Alder Hey to support the excellent work that they undertake for young Lupus patients. It’s World Kidney day on the 8th March so here are a few...

I often visit Alder Hey to support the excellent work that they undertake for yo...

Kevin53

•6 years ago

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Another venting post....

Went to GP. Asked for copy of report from recent endocrinology assessment. "Sorry, printer's not working". Asked for recent blood results, "Sorry, that's on...

Went to GP. Asked for copy of report from recent endocrinology assessment. "Sorr...

whisperit

•6 years ago

16 Replies

March's Topic of the Month - Pregnancy & Lupus (We want to hear your tips and experiences)

Our Topic of the Month discussion for March is 'Pregnancy & Lupus'. Lupus is a disease which predominantly affects women and often first presents during the...

Our Topic of the Month discussion for March is 'Pregnancy & Lupus'. Lupus is a d...

Paul_Howard

Partner•6 years ago

7 Replies

Hello Doctors kindly advise why my legs are too weak at sometimes i feel like am falling down and am not breathing normally thanks

Hello Doctors kindly advise why my legs are too weak at sometimes i feel like...

kivumbs

•6 years ago

3 Replies

Neuro, GP visits and so the saga continues...SLE/MS/EBV?!$

Hello Friends! Many of you know that I was waiting for skin biopsy results last week from my brilliant Neuro, Dr. P., followed by a visit with my GP, Dr. N who...

Hello Friends! Many of you know that I was waiting for skin biopsy results last ...

DRunnerchick

•6 years ago

8 Replies

Proof is in the pudding

I've seen two if not three Rheumatologist, two Orthopedist, and my Nurse Practitioner. No one will give me anything or do anything for me as long as my test...

I've seen two if not three Rheumatologist, two Orthopedist, and my Nurse Practit...

Tessie62

•6 years ago

9 Replies

Has anyone tried Cod Liver Oil for Lupus joint and muscle pain?

Has anyone found that Cod liver oil helps (or didn't help!) with Lupus joint and muscle pain and if so how long did it take to kick in?

Has anyone found that Cod liver oil helps (or didn't help!) with Lupus joint and...

Joanna098

•6 years ago

19 Replies

Prednisone

Hi everyone I have had a terrible few weeks with chest infection, followed by a lupus flare which was treated with a short sharp dose of prednisone Flare...

Hi everyone I have had a terrible few weeks with chest infection, followed by a ...

Hidden

•6 years ago

4 Replies

Im new here and my mom has lupus.

My mom was diagnosed with lupus a few months ago right before she turned 39. She has a full time job, 5 kids, 7 people in the house, she owns a farm with 22...

My mom was diagnosed with lupus a few months ago right before she turned 39. She...

Adee1

•6 years ago

2 Replies

Positive ANA, dsDNA and Scl70 IgG

Stumbled onto this site doing research. I am in the US. Been ill for years. Just had labs done and ANA came back positive, dsDNA positive at 14 (normal<5) and...

Stumbled onto this site doing research. I am in the US. Been ill for years. Just...

AngelaKay

•6 years ago

2 Replies

The benefits of gelatine for leaky gut repair.

Hi everyone, I haven't posted for while, although I do read the posts daily. Currently I am post operative, recovering from a mediastinal mass removal and I...

Hi everyone, I haven't posted for while, although I do read the posts daily. Cu...

field

•6 years ago

3 Replies

ANA keeps changing

New to this but here goes. Short version - 2009 I had a positive ANA and high dsdna. Was seen by rheumatologist who retested and said they were normal. I...

New to this but here goes. Short version - 2009 I had a positive ANA and high d...

wendyhoney

•6 years ago

3 Replies

Pip

I'm shaking, this is the moment I've been dreading for a long time. My pip letter has come, I feel I have no chance of getting it, I work 9 hours a week so I...

I'm shaking, this is the moment I've been dreading for a long time. My pip lette...

kt11

•6 years ago

7 Replies

Don't think my thermostat is working!!!

Hi all hope your all keeping well I cannot warm up today at all, I'm colder than when the temperature was in minus!! I'm never just comfortable, either...

Hi all hope your all keeping well I cannot warm up today at all, I'm colder tha...

Daisy78

•6 years ago

10 Replies

Sweating during day and at night.

Hi, I’m from Scotland so here it’s freezing at moment with a lot of snow! I was wondering does anyone experience sweating nearer bed time and during the night...

Hi, I’m from Scotland so here it’s freezing at moment with a lot of snow! I was ...

JaneI_1

•6 years ago

5 Replies

Bad flare up

Hi I am having a very bad flare up which is lasting over a week. What can I do to feel better? I am feeling so ill. 😭

Hi I am having a very bad flare up which is lasting over a week. What can I do ...

Tulipano

•6 years ago

4 Replies

What do rheumatologist look for to diagnose lupus?

I received my blood work results but I'm yet to see my rheumatologist for a follow up. I just need answers as to what all the numbers mean and what they are...

I received my blood work results but I'm yet to see my rheumatologist for a fol...

Newtohere

•6 years ago

11 Replies

Info please

Hi my daughter has been offered bio therapy/bio medicine this is a totally different med to what I’m on and I would like to know more about it all I now is it...

Hi my daughter has been offered bio therapy/bio medicine this is a totally diffe...

Ianrussell69

•6 years ago

9 Replies

Post operative depression

Hey. First of all I really want to write something POSITIVE!! My surgery experience was amazing.. my PTSD was taken seriously & I was looked after extremely...

Hey. First of all I really want to write something POSITIVE!! My surgery exper...

LauraMk30

•6 years ago

23 Replies

Sildenafil

Has anyone been prescribed sidlenafil for treatment of Raynards, if so what's the side effects and most importantly does it make a difference?

Has anyone been prescribed sidlenafil for treatment of Raynards, if so what's th...

luupysue

•6 years ago

6 Replies

Does such fatigue make you feel like u can’t breathe???

When u feel so exhausted and fatigued does anyone else get where they feel like they cant get enough air in or breathe as effectively and feel like they have...

When u feel so exhausted and fatigued does anyone else get where they feel like ...

Sara_A

•6 years ago

10 Replies

Dizziness and fainting

Hi, this afternoon I feel so dizzy with nausea and if I don't sit down I honestly could just faint. I did sleep so I don't know why I am feeling like this....

Hi, this afternoon I feel so dizzy with nausea and if I don't sit down I honestl...

Tulipano

•6 years ago

3 Replies

Getting diagnosed with Systemic LUPUS Erythematosus

Hello everyone my name is Sukie. I have been diagnosed with Systemic LUPUS Erythematosus since August 2016.

Hello everyone my name is Sukie. I have been diagnosed with Systemic LUPUS Eryth...

PasSukiClarke

•6 years ago

6 Replies

3 stages of sjogrens

Hi, thanks to everyone for all the helpful information on this site I have primary sjogrens and now have polyneuropathy I came across this site about the 3...

Hi, thanks to everyone for all the helpful information on this site I have prima...

1573

•6 years ago

2 Replies

Posts - LUPUS UK | HealthUnlocked

LUPUS UK

All posts for March 2018

Just diagnosed with Sjogren's and the Hydroxychloroquine doesn't' like me

So exhausted 😣

Pain in the buttocks when sitting down

Azathioprine

Blood test results

Frustrated and annoyed

A few wee facts from Alder Hey

Another venting post....

March's Topic of the Month - Pregnancy & Lupus (We want to hear your tips and experiences)

Hello Doctors kindly advise why my legs are too weak at sometimes i feel like am falling down and am not breathing normally thanks

Neuro, GP visits and so the saga continues...SLE/MS/EBV?!$

Proof is in the pudding

Has anyone tried Cod Liver Oil for Lupus joint and muscle pain?

Prednisone

Im new here and my mom has lupus.

Positive ANA, dsDNA and Scl70 IgG

The benefits of gelatine for leaky gut repair.

ANA keeps changing

Pip

Don't think my thermostat is working!!!

Sweating during day and at night.

Bad flare up

What do rheumatologist look for to diagnose lupus?

Info please

Post operative depression

Sildenafil

Does such fatigue make you feel like u can’t breathe???

Dizziness and fainting

Getting diagnosed with Systemic LUPUS Erythematosus

3 stages of sjogrens

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