Posts - Hughes Syndrome APS Forum | HealthUnlocked

Hughes Syndrome APS Forum

10,362 members • 10,549 posts

All posts for August 2011

Hughes Syndrome/APS Support Groups: I have very little support at home and shortly starting warfarin treatment.

Are there any support groups or meetings with people in similar situations in Northwest London?

Are there any support groups or meetings with people in similar situations in No...

StuartD

•13 years ago

14 Replies

Hughes Syndrome: Do clinics/hospitals encourage self monitoring and is it accurate?

StuartD

•13 years ago

10 Replies

Hughes Syndrome: Can long-term warfarin treatment be successful?

I have Hughes Syndrome and am shortly going to start taking Warfarin indefinitely. There are so many negative stories and worrying side effects; has anyone...

I have Hughes Syndrome and am shortly going to start taking Warfarin indefinitel...

StuartD

•13 years ago

12 Replies

Want to take advantage of all our features? Just log in!

Hi Is there anyone in the bristol area with APS on here? kathy x

kathyD64

•13 years ago

4 Replies

Driving application (DVLA)!!!!! Do you know if i have to tell the DVLA about my APS/Hughes syndrome?

I am reapplying for my lienace as it has been well over a year and half after my stroke and related seziures, i ve filled out all the related form for the...

I am reapplying for my lienace as it has been well over a year and half after my...

ClareSteggles

•13 years ago

10 Replies

meeting up!

I am really looking forward to meeting any one that can make it to The Stanhope in Burton On Trent tomorrow (Tuesday) it will be nice to chat with others that...

I am really looking forward to meeting any one that can make it to The Stanhope ...

Suzypawz

•13 years ago

9 Replies

What is the cause of swollen legs?

This started with swelling of knees, and pain in groin, combined with swelling of fingers, hair loss, mouth ulcers, and nasal sores. I was prescribed...

This started with swelling of knees, and pain in groin, combined with swelling o...

Rhian

•13 years ago

4 Replies

My warfarin has level dropped from the set 4-4.5 to below 1.5, I am now on tinziparin only, anyone else had a similar reaction?

I have had Hughes for 12 years. and self manage on warfarin, usually between 10 and 12 mg, my INR is set at 4-4.5 as I have clotted on warfarin when my levels...

I have had Hughes for 12 years. and self manage on warfarin, usually between 10 ...

Sallysc

•13 years ago

9 Replies

Shattered but happy

Hi all, Have been for my appointment, definate diagnosis APS, Fibromyalgia, and Lupus symptoms (bloods not caught up yet, maybe they never will), but going to...

Hi all, Have been for my appointment, definate diagnosis APS, Fibromyalgia, and...

jessielou

•13 years ago

16 Replies

does anyone know if research is looking into the association of fibromyalgia and primary APS? its related to lupus in the literature.

I was just wandering about a link and if FM is indeed an autoimmune condition. It seems from being a member of the hughes foundation several people have been...

I was just wandering about a link and if FM is indeed an autoimmune condition. I...

kathyD64

•13 years ago

6 Replies

HI, Just arrriving from Connecticut USA

Hi, I am from Connecticut USA. I have been DX with Hughes since 1990..I am so glad to be here.

Hi, I am from Connecticut USA. I have been DX with Hughes since 1990..I am so gl...

happee1

•13 years ago

4 Replies

Never give up!!

Hi there I am new to this site but I thought Id share my story. I ve been living with this nasty disease since being diagnosed with APS in 1999 after I got a...

Hi there I am new to this site but I thought Id share my story. I ve been livi...

Linda72

•13 years ago

3 Replies

Hope and Dreams

Two plus two, two plus two, I get a rythm in my head a holding pattern that feels me with fear My hand settles into a rythm. I'm sad and disappointed I'm...

Two plus two, two plus two, I get a rythm in my head a holding pattern that fee...

ClareSteggles

•13 years ago

3 Replies

Is anyone using a coaguchek machine to monitor their INR's ? Since i have purchased one. I feel i can control of my INR's.

bernieembleton

•13 years ago

13 Replies

Zumba!!

Oh dear...been to the gym, had a fitness programme organised for me...then I went to a Zumba class! I did what I could but my feet wouldnt go where I wanted...

Oh dear...been to the gym, had a fitness programme organised for me...then I wen...

Suzypawz

•13 years ago

5 Replies

Just arrived

Hi everyone, just joined the group. Diagnosed in Scotland 2002, and living with the condition, so far, successfully. Good to have found here, all thanks to...

Hi everyone, just joined the group. Diagnosed in Scotland 2002, and living with ...

Andrewl

•13 years ago

4 Replies

Are patent foramen ovale (PFO) common place in Hughes suffers?

This is a question i have been busting to ask people on here as there is a link between PFO's and migrines.

This is a question i have been busting to ask people on here as there is a link ...

ClareSteggles

•13 years ago

2 Replies

Do I have Hughes Syndrome? Details below.

In 2002 I had a femoral DVT (I had not been on a long haul flight). Warfarin was prescribed for 6 months. After this period test were carried out to determine...

In 2002 I had a femoral DVT (I had not been on a long haul flight). Warfarin was...

JoyceyMee33

•13 years ago

1 Reply

Does a rituximab therapy help to lower anticardiolipin antibodies levels??

I´ve been diagnosed with Hughe´s Syndrome and Lupus twelve years ago. I´ve had a miscarriage early this year. Mis doctors tell me that I shouldn´t try another...

I´ve been diagnosed with Hughe´s Syndrome and Lupus twelve years ago. I´ve had a...

yazel50

•13 years ago

8 Replies

Request for pulse magazine

If anyone is going to their GP in the next week or so, please could you ask them for an old copy of Pulse Magazine (this is the main journal for GPs)? The...

If anyone is going to their GP in the next week or so, please could you ask them...

Hidden

•13 years ago

3 Replies

anyone with APLS inor around Windsor Ont Canda

RosemaryGeorgette

•13 years ago

1 Reply

Will this ever go away?

1964Moonstone

•13 years ago

6 Replies

Does anyone know of an APS/Hughes specialist in Norfolk/Suffolk or Cambridgeshire?

ECarter

•13 years ago

4 Replies

Prof Hughes' July 2011 blog

The first of July saw the final day of our annual ‘Ten Topics’ meeting – the 25th (and in my view, the very best) Ten Topics ever. Our speakers in the...

The first of July saw the final day of our annual ‘Ten Topics’ meeting – the 25t...

Hidden

•13 years ago

5 Replies

INR testing experiences?

Anyone on warfarin who is prepared to share their experience of INR testing? I usually am tested once evey 2-3 weeks and get the results by post on the...

Anyone on warfarin who is prepared to share their experience of INR testing? I ...

Eliza_E

•13 years ago

6 Replies

Hearing about others' experiences is just the tonic (weird, I know; sory!)

Gosh, I so hope this isn't a piece of major tactlesness - I do mean it in the best posible way as a thank you to everyone for sharing their experiences!...

Gosh, I so hope this isn't a piece of major tactlesness - I do mean it in the be...

Eliza_E

•13 years ago

5 Replies

My story

I am 47 year old Mum of 3 and 1 fantastic stepson. My blessings, are a wonderful partner, My beautiful children. 3 crazy dogs, one a puppy. so very busy...

I am 47 year old Mum of 3 and 1 fantastic stepson. My blessings, are a wonderfu...

jessielou

•13 years ago

3 Replies

Do my symptoms sound like it could be APLS? Just sent bloodwork in. Trying to figure out what has been wrong with me for over 3 years!

My arms turn purple and get tight, cold and weak when I do physical activities or stand. I'm always lightheaded and have trouble with thinking and memory. I...

My arms turn purple and get tight, cold and weak when I do physical activities o...

Tighidden

•13 years ago

3 Replies

Does anyone know a APS specialist in the North West?

I currently dont have a specialist montioring my condition or giving advice to my GP. My old consultant as just signed my off and said look it life long all...

I currently dont have a specialist montioring my condition or giving advice to m...

ClareSteggles

•13 years ago

4 Replies

Introduction

Let keep it short and sweet...... I am 29 live in cumbria and teach ICT and Maths in a Secondary School. I meet APS in the summer of 2010. The story...

Let keep it short and sweet...... I am 29 live in cumbria and teach ICT and Mat...

ClareSteggles

•13 years ago

4 Replies

Posts - Hughes Syndrome APS Forum | HealthUnlocked

Hughes Syndrome APS Forum

All posts for August 2011

Hughes Syndrome/APS Support Groups: I have very little support at home and shortly starting warfarin treatment.

Hughes Syndrome: Do clinics/hospitals encourage self monitoring and is it accurate?

Hughes Syndrome: Can long-term warfarin treatment be successful?

Hi Is there anyone in the bristol area with APS on here? kathy x

Driving application (DVLA)!!!!! Do you know if i have to tell the DVLA about my APS/Hughes syndrome?

meeting up!

What is the cause of swollen legs?

My warfarin has level dropped from the set 4-4.5 to below 1.5, I am now on tinziparin only, anyone else had a similar reaction?

Shattered but happy

does anyone know if research is looking into the association of fibromyalgia and primary APS? its related to lupus in the literature.

HI, Just arrriving from Connecticut USA

Never give up!!

Hope and Dreams

Is anyone using a coaguchek machine to monitor their INR's ? Since i have purchased one. I feel i can control of my INR's.

Zumba!!

Just arrived

Are patent foramen ovale (PFO) common place in Hughes suffers?

Do I have Hughes Syndrome? Details below.

Does a rituximab therapy help to lower anticardiolipin antibodies levels??

Request for pulse magazine

anyone with APLS inor around Windsor Ont Canda

Will this ever go away?

Does anyone know of an APS/Hughes specialist in Norfolk/Suffolk or Cambridgeshire?

Prof Hughes' July 2011 blog

INR testing experiences?

Hearing about others' experiences is just the tonic (weird, I know; sory!)

My story

Do my symptoms sound like it could be APLS? Just sent bloodwork in. Trying to figure out what has been wrong with me for over 3 years!

Does anyone know a APS specialist in the North West?

Introduction

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