Posts - Hughes Syndrome APS Forum | HealthUnlocked

Hughes Syndrome APS Forum

10,378 members • 10,571 posts

Sort posts by:

Having a bad day

This is my third post in this group and I’m hoping to get some positive testimonials from long term APS patients. I’m 38, my partial diagnosis started a month...

This is my third post in this group and I’m hoping to get some positive testimon...

Vmarti

•3 days ago

21 Replies

Eliquis

This may be a little long. On June 9, I went to the ER with shortness of breath, a CT scan showed multiple bilateral pulmonary embolisms. The doctor started me...

This may be a little long. On June 9, I went to the ER with shortness of breath,...

Vmarti

•4 days ago

11 Replies

Recently diagnosed

I was diagnosed about a month ago. I was hospitalized with bilateral PEs. I have been on eliquis since but my pulmonologist is putting me on warfarin which I...

I was diagnosed about a month ago. I was hospitalized with bilateral PEs. I have...

Vmarti

•12 days ago

14 Replies

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

Pneumococcal vaccine

Hi everyone , can anyone tell me if the pneumococcal vaccine is safe ? I have uctd and triple positive APS thanks Elfie

Hi everyone , can anyone tell me if the pneumococcal vaccine is safe ? I have uc...

Elfie1

•12 days ago

8 Replies

APS and leaky gut

Hello all, I am writing regarding my daughter who has APS. She has been taking rather large doses of Coumadin for about 20 years now. She eats a very healthy...

Hello all, I am writing regarding my daughter who has APS. She has been taking ...

monticello

•21 days ago

13 Replies

new INR tester

I have been diagnosed with APS for 25 years after having a stroke at 37 years. My treatment medication treatment regime is warfarin plus baby aspirin. I have...

I have been diagnosed with APS for 25 years after having a stroke at 37 years. M...

Beckysuec

•25 days ago

33 Replies

What a month!

Don't worry about reading if too long and boring.............. After a year that was pretty much boring (felt well, no changes to meds etc.) along came...

Don't worry about reading if too long and boring.............. After a year tha...

Ozchick

•1 month ago

11 Replies

"What Rheumatologists Need to Know About Antiphospholipid Syndrome Yu (Ray) Zuo, MD, MS, & Jason S. Knight, MD, PhD | June 8, 2024"

https://www.the-rheumatologist.org/article/what-rheumatologists-need-to-know-about-antiphospholipid-syndrome/

https://www.the-rheumatologist.org/article/what-rheumatologists-need-to-know-abo...

Piscesdreamer

•1 month ago

6 Replies

Memory

Hi folks, I read that a side effect of APS can be impact on memory. It’s hard to put a date on it, I was finally diagnosed Triple P a year ago after strokes in...

Hi folks, I read that a side effect of APS can be impact on memory. It’s hard to...

sailorbaejon

•1 month ago

9 Replies

Triple positives?

Hello there, Just looking to connect with all the very few triple positives/ High titres APS fellows out there. I have managed my condition with Warfarin so...

Hello there, Just looking to connect with all the very few triple positives/ Hig...

Ignacio182

•2 months ago

24 Replies

Advice about experts at London Bridge Hospital

I have an unusual history. In 2007, I recovered from several months in hospital with hypoxia and very severe chest pain only when I was put on heparin. I...

I have an unusual history. In 2007, I recovered from several months in hospital ...

Annslack

•2 months ago

18 Replies

APS and Panic Attacks

Hi, I have been living with the diagnosis of APS since 2017 after a mini-stroke in my left eye, which fortunately left no damage. Recently, I switched from...

Hi, I have been living with the diagnosis of APS since 2017 after a mini-stroke...

Alessandra001

•2 months ago

14 Replies

Leflunomide

My rheumatologist might start me on this next week. Have been reading up on it, and it's a bit scary Anyone here taking it?

My rheumatologist might start me on this next week. Have been reading up on it, ...

donnabrain

•2 months ago

7 Replies

right side face droop

Hi im new here and wondered if anyone suffered facial droop one side. mine was right side face and mouth along with muscle weakness, worst on right side but...

Hi im new here and wondered if anyone suffered facial droop one side. mine was r...

stiff19

•2 months ago

20 Replies

New Post, community only please

HiI found out I had APS during my 8th pregnancy in 2006. I had PEs. Fast forward to 2024. One of my adult daughters had PEs in pregnancy, horrific treatment...

HiI found out I had APS during my 8th pregnancy in 2006. I had PEs. Fast forward...

Dawnm10

•2 months ago

4 Replies

Warfarin

Has anyone experienced Warfarin failing you more than once? I have had three different instances where I had large clots in my lungs while on it. I am still on...

Has anyone experienced Warfarin failing you more than once? I have had three dif...

Willow7733

•2 months ago

6 Replies

Blood thinning jab that won’t cause internal bleeding

In the Health section of the Mail last November I read about a new injection Abelacimab which in a head to head trial caused 81% fewer major bleeding...

In the Health section of the Mail last November I read about a new injection Abe...

Zamalek

•2 months ago

2 Replies

Ryeqo medication

Is anyone on Ryeqo? I have fibroids and endo and someone suggested this, but reading the product info I'm not too sure. I have APS and have previously...

Is anyone on Ryeqo? I have fibroids and endo and someone suggested this, but rea...

alicat_au

•2 months ago

4 Replies

IV Therapy safe with APS?

I am having trouble getting help with the next phase of my disease. I have been in a 5 month funk with micro clots which has caused fatigue and all the...

I am having trouble getting help with the next phase of my disease. I have been...

prj789

•2 months ago

23 Replies

confusion about diagnosis

my blood work indicated aps. i had a stroke and tia. i'm on warfarin. neither the hemotologist nor the neurologist seem to want to say for certain that i have...

my blood work indicated aps. i had a stroke and tia. i'm on warfarin. neither t...

47ginger

•2 months ago

23 Replies

Does anyone know anything about the Harpal Clinic?

Has anyone heard of the Harpal Clinic. Allegedly multidisciplinary, concentrating on autoimmune and related conditions. Not cheap of course. I'm just fed up...

Has anyone heard of the Harpal Clinic. Allegedly multidisciplinary, concentratin...

Coppernob

•3 months ago

2 Replies

Hives

Hi Everyone! Disgusting outbreak of hives. I have been lucky - been awhile. Usually later on in the summer. any rec’s? I am on the east coast not too...

Hi Everyone! Disgusting outbreak of hives. I have been lucky - been awhile. U...

Tennisbum

•3 months ago

11 Replies

Eliquis for Antiphospholipid syndrome?

I had a pulmonary embolism and was prescribed Eliquis 5 mg 2xday. Does anyone else take Eliquis for pulmonary embolism? Are you experiencing any side...

I had a pulmonary embolism and was prescribed Eliquis 5 mg 2xday. Does anyone e...

LavenderLemonade

•3 months ago

17 Replies

extremely high inrs for aps

I've had my inr past 10.8 and had to receive plasma 2 days ago it was 9.9 they did not make me go in I get really lethargic and just want to sleep and I...

I've had my inr past 10.8 and had to receive plasma 2 days ago it was 9.9 they...

shinyeyes

•3 months ago

8 Replies

Phosphatidylserine

I thought I posted here about phosphatidylserine but can't find it now.... Does anyone know anything about taking this with APS? It is a phospholipid so as I...

I thought I posted here about phosphatidylserine but can't find it now.... Does ...

Coppernob

•3 months ago

2 Replies

Low O2

CAPS survivor here. Lately my O2 has been consistently between 87% -93% resting and walking. A trip to the ER the other day showed no PE and clear lungs. They...

CAPS survivor here. Lately my O2 has been consistently between 87% -93% resting ...

grandmagigitovivi

•3 months ago

7 Replies

Parathyroid

I am booked in for a Parathyroidectomy and I just wondered whether my APS, as an autoimmune disease, could have had something to do with parathyroid condition?...

I am booked in for a Parathyroidectomy and I just wondered whether my APS, as an...

Raschen

•3 months ago

5 Replies

Persistently low INR

For the past 12 weeks or so, I've had a persistenly low INR, ranging from 1.2 to 1.6. (My ideal range, here in the U.S., is 3.0-3.5) . My INR consultant...

For the past 12 weeks or so, I've had a persistenly low INR, ranging from 1.2 to...

henyrjonze

•3 months ago

9 Replies

Might be diagnosed with Antiphospholipid Syndrome (APS)

Hi I previously in January 2023 was diagnosed with PE, the past year has been difficult and long and knowing I was on blood thinners adoxaban forever as the...

Hi I previously in January 2023 was diagnosed with PE, the past year has been d...

Summer133

•4 months ago

17 Replies

Warfarin & Tattoos

Hi everyone, since I started on warfarin I’ve not had any more tattoos, (NHS recommend not to) but wondered if anyone has experience or thoughts around having...

Hi everyone, since I started on warfarin I’ve not had any more tattoos, (NHS rec...

sailorbaejon

•4 months ago

4 Replies

Write a post or ask a question

Posts - Hughes Syndrome APS Forum | HealthUnlocked

Hughes Syndrome APS Forum

Having a bad day

Eliquis

Recently diagnosed

Pneumococcal vaccine

APS and leaky gut

new INR tester

What a month!

"What Rheumatologists Need to Know About Antiphospholipid Syndrome Yu (Ray) Zuo, MD, MS, & Jason S. Knight, MD, PhD | June 8, 2024"

Memory

Triple positives?

Advice about experts at London Bridge Hospital

APS and Panic Attacks

Leflunomide

right side face droop

New Post, community only please

Warfarin

Blood thinning jab that won’t cause internal bleeding

Ryeqo medication

IV Therapy safe with APS?

confusion about diagnosis

Does anyone know anything about the Harpal Clinic?

Hives

Eliquis for Antiphospholipid syndrome?

extremely high inrs for aps

Phosphatidylserine

Low O2

Parathyroid

Persistently low INR

Might be diagnosed with Antiphospholipid Syndrome (APS)

Warfarin & Tattoos

Search posts

Pinned Posts

Latest poll

Out of Hours GP provision - how has your's served you in an emergency?

Topics

Archive