Posts - Hughes Syndrome APS Forum | HealthUnlocked

Hughes Syndrome APS Forum

10,354 members • 10,542 posts

All posts for April 2019

GAPPS SCORE chart

I read one of the papers that was posted here and came across the GAPPS Score. Very interesting! Do y’all think they will incorporate this into diagnosing?...

I read one of the papers that was posted here and came across the GAPPS Score. ...

Ylmom

•5 years ago

7 Replies

Amaurosis Fugex

Hi I just wondered Is it possible or has anybody still had symptoms such as loss of vision when INR is in range ?

Hi I just wondered Is it possible or has anybody still had symptoms such as los...

Lind8

•5 years ago

12 Replies

An interesting read

https://www.nature.com/articles/s41467-019-09801-x Mary F

MaryF

Administrator•5 years ago

8 Replies

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SLE after APS?

Hello there. I was diagnosed by being primary APS like five years ago. Could ivdevelop SLE now ?

Hello there. I was diagnosed by being primary APS like five years ago. Could i...

azahran

•5 years ago

9 Replies

Acrocyanosis

Does anyone know if acrocyanosis is associated with APS? If so how?

phirestar

•5 years ago

2 Replies

Coumadin (and Xarleto) and Memory Loss

Hi All, I was wondering if anyone else has experienced memory loss while being on blood thinners. I started taking Coumadin when I started graduate school in...

Hi All, I was wondering if anyone else has experienced memory loss while being ...

MW_with_APS

•5 years ago

31 Replies

Hi all

I am due a endoscopy but on apicaban etc and cardiologist said must keep taking them but the nurses in endoscopy need me to be off meds a day or two before

I am due a endoscopy but on apicaban etc and cardiologist said must keep taking ...

West56

•5 years ago

5 Replies

Why women have more auto- immune diseases

https://m.medicalxpress.com/news/2019-04-discovery-women-autoimmune-diseases-men.html Interesting article on why women have more autoimmune diseases than men -...

https://m.medicalxpress.com/news/2019-04-discovery-women-autoimmune-diseases-men...

dogtail

•5 years ago

2 Replies

Admitted to hospital

Had quite a difficult few months, bradycardia being investigated, had cardiac mri etc and diagnosed hypothyroid. Had 4w off work with extreme fatigue and...

Had quite a difficult few months, bradycardia being investigated, had cardiac mr...

Fusch

•5 years ago

11 Replies

The Change 🤦🏻‍♀️🤦🏻‍♀️

Hi all Been a while since I posted as had to have a Partial Nephrectomy in August as I had a tumour on my kidney. I only have this one kidney which already has...

Hi all Been a while since I posted as had to have a Partial Nephrectomy in Augus...

BridgetGoldie

•5 years ago

7 Replies

Weird results from a diabetes monitor machine.

Hi a friend of my has diabetes and I was just wondering what kind of reading I would get so I had a quick test. The result kept coming back lo meaning so low...

Hi a friend of my has diabetes and I was just wondering what kind of reading I w...

Newcastlelad

•5 years ago

13 Replies

Heartbroken

That's the only word I could think to put to start writing everything was going so well with the pregnancy the injections seemed to be working I was eating...

That's the only word I could think to put to start writing everything was going ...

Clairemom

•5 years ago

17 Replies

What are your symptoms when your INR is high?

Yesterday I had an INR of 9.8 and was experiencing crippling chest pain as well as random pains in my head (like having a knitting needle poking into my...

Yesterday I had an INR of 9.8 and was experiencing crippling chest pain as well ...

WendyWoo50

•5 years ago

17 Replies

OK, anyone have any experience with Cellcept or Ibrutinib?

Saw my hematologist this morning. We discussed my rheumatologist's suggestions as to medication to suppress my APS. He added two to consider to the mix.

Saw my hematologist this morning. We discussed my rheumatologist's suggestions a...

Holley

•5 years ago

6 Replies

Unexplained Weight loss

Hi all I have Primary APS which has led to bilaterally renal vein thrombosis and renal failure. I was fortunate to have a kidney transplant from my husband in...

Hi all I have Primary APS which has led to bilaterally renal vein thrombosis and...

Womanfriday

•5 years ago

21 Replies

Anyone used Belimumab to suppress their APS?

My new rheumatologist mentioned Rituximab (which I had a bad experience w/ in 2006), Plaquenil, and Belimumab as possible drugs to suppress my Lupus...

My new rheumatologist mentioned Rituximab (which I had a bad experience w/ in 20...

Holley

•5 years ago

3 Replies

GHIC Patient's Day, 13th September 2019

https://www.eventbrite.com/e/patient-event-the-big-3-lupus-hughes-sjogrens-tickets-59697285187 Looking forward to seeing our regular attendees and some new...

https://www.eventbrite.com/e/patient-event-the-big-3-lupus-hughes-sjogrens-ticke...

MaryF

Administrator•5 years ago

2 Replies

FACTOR V LEIDEN/COMPOUNDED HRT

hi thanks for a place to speak out. i am 66 yrs old. had my emergency hysterectomy at 34 years old and lost both ovaries at same time, within 1/2 hour of...

hi thanks for a place to speak out. i am 66 yrs old. had my emergency hysterecto...

ILLUSION1

•5 years ago

2 Replies

catastrophic APS

history.... numerous TIA'S followed by stroke then diagnosed with pulmonary fibrosis due to APS. got good treatment, sometimes. got better after getting care...

history.... numerous TIA'S followed by stroke then diagnosed with pulmonary fi...

stevenr

•5 years ago

12 Replies

Positive IgG anticardiolipin antibodies

Hello After 5 years of symptoms (initially thought to be MS) I have finally had two positive IgG anticardiolipin antibodies (22 and 26 units-normal is less...

Hello After 5 years of symptoms (initially thought to be MS) I have finally had...

bathouse

•5 years ago

11 Replies

Tumor in psncreas

Can APS cause a mass in pancreas.

msins

•5 years ago

7 Replies

Third degree burn to foot

As those who are familiar with me know i have had strokes in the past and my reflexes arent always quick. Accidently had hot / boiling water land on my sock...

As those who are familiar with me know i have had strokes in the past and my ref...

Wittycjt

•5 years ago

24 Replies

STOPPING WARFARIN IN APS PATIENT

hello all, i suffered a stroke 2 years ago and was diagnosed with catastrophic APS. I have been taking warfarin along with ecosprin since last 2 years. Now my...

hello all, i suffered a stroke 2 years ago and was diagnosed with catastrophic ...

Rajatnijh12

•5 years ago

10 Replies

A Big thank you to Wittij from this site

I had my aorta valve replaced and thanks to Wiitij's suggestion, I gave my surgeons in writing, the bridging plan from my hematologist. The operation was...

I had my aorta valve replaced and thanks to Wiitij's suggestion, I gave my surge...

msins

•5 years ago

11 Replies

limb weakness, fatigue and brain fog.

Hi, i'm a 37 year old woman and newly diagnosed with APS after many years of being told by my GP that my chronic headaches were cased by depression and...

Hi, i'm a 37 year old woman and newly diagnosed with APS after many years of bei...

frenchiemum

•5 years ago

18 Replies

APS and tumours are related?

Hi all...As my Mom had severe vomits everyday, Gynaec suggested Abdominal and Pelvis scans..In Report attached below, the size of the cyst is large and Doc...

Hi all...As my Mom had severe vomits everyday, Gynaec suggested Abdominal and Pe...

Abc91

•5 years ago

28 Replies

Anyone else have a hemorrhagic AND ischemic strokes?

So, in the past year, I've had 2 strokes. My first was caused by a clot as I was subtherapeutic for some time. The second in February was caused by a bleed....

So, in the past year, I've had 2 strokes. My first was caused by a clot as I was...

Holley

•5 years ago

8 Replies

Continuing the legacy

Quick question for our admins: Are there any doctors that have/are being mentored by Dr. Hughes? Just reading the current blog by Dr. Hughes and the thought...

Quick question for our admins: Are there any doctors that have/are being mentore...

Mermaidatheart

•5 years ago

3 Replies

Inability to work

Hi, I'm new to this site, I have APS, I started with my first clots when I was 23 I am now almost 51. I was symptom free for 8 years until I started mental...

Hi, I'm new to this site, I have APS, I started with my first clots when I was 2...

Spoodles

•5 years ago

4 Replies

GHIC Patient's Day - (Annual Patient Event - The Big Three) 13th September 2019

There will be regular updates regarding this event, People have started booking already:...

There will be regular updates regarding this event, People have started booking...

MaryF

Administrator•5 years ago

1 Reply

Posts - Hughes Syndrome APS Forum | HealthUnlocked

Hughes Syndrome APS Forum

All posts for April 2019

GAPPS SCORE chart

Amaurosis Fugex

An interesting read

SLE after APS?

Acrocyanosis

Coumadin (and Xarleto) and Memory Loss

Hi all

Why women have more auto- immune diseases

Admitted to hospital

The Change 🤦🏻‍♀️🤦🏻‍♀️

Weird results from a diabetes monitor machine.

Heartbroken

What are your symptoms when your INR is high?

OK, anyone have any experience with Cellcept or Ibrutinib?

Unexplained Weight loss

Anyone used Belimumab to suppress their APS?

GHIC Patient's Day, 13th September 2019

FACTOR V LEIDEN/COMPOUNDED HRT

catastrophic APS

Positive IgG anticardiolipin antibodies

Tumor in psncreas

Third degree burn to foot

STOPPING WARFARIN IN APS PATIENT

A Big thank you to Wittij from this site

limb weakness, fatigue and brain fog.

APS and tumours are related?

Anyone else have a hemorrhagic AND ischemic strokes?

Continuing the legacy

Inability to work

GHIC Patient's Day - (Annual Patient Event - The Big Three) 13th September 2019

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