Posts - Hughes Syndrome APS Forum | HealthUnlocked

Hughes Syndrome APS Forum

10,363 members • 10,557 posts

All posts for August 2016

Statins

Hi everyone, roughly 3 years ago after having a dreaded CAPS episode (hospitalised for 6 months in all) I was started on a then trial of hydroxychloroquine as...

Hi everyone, roughly 3 years ago after having a dreaded CAPS episode (hospitalis...

lloydyuk

•8 years ago

12 Replies

Finally got the Hughes diagnosis!

I'm looking for any hints or tips from any young people diagnosed with Hughes. 12 months ago, when i was 20, I had a completely random DVT (knee to belly...

I'm looking for any hints or tips from any young people diagnosed with Hughes. ...

Zoebarber22

•8 years ago

17 Replies

Update on cardiac catherization and saw new Rheumatologist today!

Hi thank you all for ur well wishes! My heart is fine! Doc aid cud be something else and to follow up! So happy my heart good now! I went to new Rheumy for...

Hi thank you all for ur well wishes! My heart is fine! Doc aid cud be something ...

Debbweb01

•8 years ago

6 Replies

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

come off comadain (blood thinner)

Hello everybody, My wife had blood clot in her left leg 2 years ago, since then shes been on warfareen, 2 weeks ago she had sonogram test , her doctor decided...

Hello everybody, My wife had blood clot in her left leg 2 years ago, since then ...

ogas1000

•8 years ago

16 Replies

is this 'normal'

to feel very weak, clumsy, tired, drained most of the time, warm sunny days zap my energy levels too. I am taking levothyroxine warfarin, statin, and...

to feel very weak, clumsy, tired, drained most of the time, warm sunny days zap...

rolfe

•8 years ago

9 Replies

Symptoms raising their ugly head!!

I need to vent as its not something I find people IRL understand. I was diagnosed 3 years ago with APS and a lupus like syndrome. I'm on a watch and wait for...

I need to vent as its not something I find people IRL understand. I was diagnose...

Tinythepanda

•8 years ago

6 Replies

Hi had chest pains am in hospital

Hi I went to the doc on Tuesday specifically to tell him of these weak and sweating spells I've been getting! He asked me some things and I was about to tell...

Hi I went to the doc on Tuesday specifically to tell him of these weak and sweat...

Debbweb01

•8 years ago

9 Replies

Severe Pain caused by the damage and clots I had because of APS

I was just wondering if others deal with severe pain from DVTS and blood clots that damaged your body. I have chronic venus insufficiency and peripheral artery...

I was just wondering if others deal with severe pain from DVTS and blood clots t...

Kalykrill

•8 years ago

14 Replies

Sneddons Syndrome

Hi, I'm seronegative APS and I saw my Neurologist yesterday who has confirmed that I have Sneddons Syndrome. Although I'm anxious, frightened and lots of other...

Hi, I'm seronegative APS and I saw my Neurologist yesterday who has confirmed th...

strawberry69

•8 years ago

5 Replies

Diagnosed with fibromyalgia

Hi everyone I was diagnosed yesterday with fibromyalgia and possible coeliac? I know a lot of us have this diagnosis alongside Hughes. Can someone please tell...

Hi everyone I was diagnosed yesterday with fibromyalgia and possible coeliac? I...

Kittybaker

•8 years ago

4 Replies

Back on The Warfarin after Chemo

Hi all, just a little update as to my situation which is 'So far so good' just in case anyone is interested/bothered/bored/happens to them.. haha So had some...

Hi all, just a little update as to my situation which is 'So far so good' just i...

CheddarAddict

•8 years ago

5 Replies

What dose of warfarin do you take and what is your INR range, also include estimation of amount of vit k you eat. Appreciated💙

I'm still trying to get this right.... I take 12.5mg of warfarin daily. My doctor wants my INR range to be between 2-3. I eat approximately 20-30 mcg of vit k...

I'm still trying to get this right.... I take 12.5mg of warfarin daily. My docto...

Wittycjt

•8 years ago

49 Replies

Finding Drs who know about APS in the US

America college of rheumatology, Atlanta Georgia: www.rheumatology.org phone (404)633-3777. Email: acr@rheumatology.org The Antiphospholipid Syndrome...

America college of rheumatology, Atlanta Georgia: www.rheumatology.org phone (40...

Wittycjt

•8 years ago

8 Replies

Hello--I'm a newbie

Hello, It's nice to find a site for APS! I've had APS since my late 20's and I'm now 54. I really had a lot of problems finding a diagnosis in the late 80's....

Hello, It's nice to find a site for APS! I've had APS since my late 20's and I'...

Saltydogs

•8 years ago

5 Replies

Need advice on hurt back some blood pooling and tremendous pain!!!

Hello Friends & Countrymen & Countrywomen too!!! Lol... CONGRATS TO UK ON GOLD MEDALS IN OLYMPICS! Congrats Kirsten for Sweden with Swimming Medals!!! Yay!!!...

Hello Friends & Countrymen & Countrywomen too!!! Lol... CONGRATS TO UK ON GOLD M...

Debbweb01

•8 years ago

2 Replies

Gastroscopy and Warfarin

I am getting a Gastroscopy done on 5 September to check for Coeliac Disease. I am taking Warfarin and Aspirin daily. I self test and dose with good control, my...

I am getting a Gastroscopy done on 5 September to check for Coeliac Disease. I a...

AvsG

•8 years ago

11 Replies

Two months down the line

hi everyone, thanks to your advice I'm now being referred to an aps specialist. Every thing was going well until two weeks ago, I had a hyperglcemic episode...

hi everyone, thanks to your advice I'm now being referred to an aps specialist. ...

dawnzy

•8 years ago

3 Replies

Hello all

Hi im so glad i found this forum because i no no-one not even my GP who knows anything about this syndrome ive had it since about the age of 21 when i had my...

Hi im so glad i found this forum because i no no-one not even my GP who knows an...

amos1

•8 years ago

4 Replies

SOS bracelet

Well I'm back from my holiday l been to the jewellers to see if they would reimburse or Change the SOS bracelet but they declined because I lost my receipt ....

Well I'm back from my holiday l been to the jewellers to see if they would reimb...

Elfie1

•8 years ago

6 Replies

APS specialists in the US

If you see (or have seen) an APS specialist in the US, would you mind sharing who you see and your experience? I am in the southeast. the closest I have found...

If you see (or have seen) an APS specialist in the US, would you mind sharing wh...

JuliesaidFutz

•8 years ago

23 Replies

APS

Hi there, I have recently been diagnosed with APS, but now being tested for Polmyoparthy (hope correct spelling) I have a target range of 3.5 - 4.5 but am...

Hi there, I have recently been diagnosed with APS, but now being tested for Polm...

Squiz66

•8 years ago

4 Replies

In hospital

Long story but I collapsed in waiting room with mass headache n feeling queasy so didn't get colonoscopy. Was told to stop warfarin Friday and self inject...

Long story but I collapsed in waiting room with mass headache n feeling queasy s...

Fra22-57

•8 years ago

18 Replies

INTERESTING article- Viral Mediated Immune Dysfunction causing hypercoaguable state

I am constantly researching, trying to find out as much as I can about the body and this crazy illness. I came across this very interesting article and...

I am constantly researching, trying to find out as much as I can about the body ...

ehc918

•8 years ago

13 Replies

mitral valve regurgitation

Hi can anyone on here ,tell me what symptoms they get with mild mitral valve regurge . I have just turned 64 i aso have mpn Et I have ectopic beats which i...

Hi can anyone on here ,tell me what symptoms they get with mild mitral valve reg...

Hidden

•8 years ago

15 Replies

Feeling frustrated

I'm 22 and APS is consuming my life. When I was first diagnosed I really tried to just go on with my life and be young, like nothing was wrong. But it seems...

I'm 22 and APS is consuming my life. When I was first diagnosed I really tried t...

Dcaraveo

•8 years ago

30 Replies

Is this as good as it gets?

Hello all, thank you for allowing me to join your little group. I've been reading past posts and I'm wondering if you all can give me some insight. Although I...

Hello all, thank you for allowing me to join your little group. I've been readin...

JuliesaidFutz

•8 years ago

24 Replies

APS and the management of anticoagulation during surgery.

Having caused a stroke twelve years ago my APS was diagnosed.Subsequently I have suffered from fibroids and gallstones which along with the warfarin, have been...

Having caused a stroke twelve years ago my APS was diagnosed.Subsequently I have...

jagessar

•8 years ago

15 Replies

Brittle APS?

Hi all, I'm new here. I was diagnosed with Hughes syndrome and pulmonary hypertension 2 years ago after almost a year in hospital and numerous operations to...

Hi all, I'm new here. I was diagnosed with Hughes syndrome and pulmonary hyperte...

Amylou86

•8 years ago

34 Replies

New to this site

I wasn't aware APS could be hereditary, I was diagnosed in October after many tests after having a stroke in July 2015 which I find can happen when not picked...

I wasn't aware APS could be hereditary, I was diagnosed in October after many te...

Dot69

•8 years ago

14 Replies

Professor Graham Hughes' Monthly Blog July 2016

BLOG : July 2016 A month of highs and lows. After the awful, grey June, at least the weather brightened up. Lows included the terrorist outrages in France....

BLOG : July 2016 A month of highs and lows. After the awful, grey June, at leas...

MaryF

Administrator•8 years ago

28 Replies

Posts - Hughes Syndrome APS Forum | HealthUnlocked

Hughes Syndrome APS Forum

All posts for August 2016

Statins

Finally got the Hughes diagnosis!

Update on cardiac catherization and saw new Rheumatologist today!

come off comadain (blood thinner)

is this 'normal'

Symptoms raising their ugly head!!

Hi had chest pains am in hospital

Severe Pain caused by the damage and clots I had because of APS

Sneddons Syndrome

Diagnosed with fibromyalgia

Back on The Warfarin after Chemo

What dose of warfarin do you take and what is your INR range, also include estimation of amount of vit k you eat. Appreciated💙

Finding Drs who know about APS in the US

Hello--I'm a newbie

Need advice on hurt back some blood pooling and tremendous pain!!!

Gastroscopy and Warfarin

Two months down the line

Hello all

SOS bracelet

APS specialists in the US

APS

In hospital

INTERESTING article- Viral Mediated Immune Dysfunction causing hypercoaguable state

mitral valve regurgitation

Feeling frustrated

Is this as good as it gets?

APS and the management of anticoagulation during surgery.

Brittle APS?

New to this site

Professor Graham Hughes' Monthly Blog July 2016

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