Posts - Hughes Syndrome APS Forum | HealthUnlocked

Hughes Syndrome APS Forum

10,484 members•10,661 posts

Sort posts by:

Long time with APS. Getting worse??

I was diagnosed 30 years ago with APS (repeated miscarriages). At the time, I was told it would only be an issue while pregnant. Never really any issues...

I was diagnosed 30 years ago with APS (repeated miscarriages). At the time, I wa...

Adn28

•4 days ago

7 Replies

INR Results

I Suffer From APS , Normally Feel Good When My INR Is Between 4 - 4.5 , My INR Keeps Fairly Stable With The Odd Blips, I Feel At My Best When Its Above 4 ,...

I Suffer From APS , Normally Feel Good When My INR Is Between 4 - 4.5 , My INR K...

Markgammon06

•4 days ago

17 Replies

APS Blood flowing backwards?

Hi, does anyone suffer with a feeling that your blood flows backwards at night or when lying down? I wake nightly in pools of sweat, with my organs throbbing...

Hi, does anyone suffer with a feeling that your blood flows backwards at night o...

Lookingforadviceuk

•11 days ago

5 Replies

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

Experience with LDN?

I was wondering if anyone has had experience with Low Dose Naltrexone? Some background, I have APS diagnosed last summer. I also have Fibromyalgia, Hashimotos,...

I was wondering if anyone has had experience with Low Dose Naltrexone? Some back...

Zombiegrl5599

•14 days ago

5 Replies

bruising

My wife was told she had Hughes syndrome back in 2006 but it seemed have, not caused any issues for a long time, but she has just started coming out with...

My wife was told she had Hughes syndrome back in 2006 but it seemed have, not ca...

Phojespa

•18 days ago

4 Replies

list of vitamin k values in food

Here is a resource I found to help track my food intake of vitamin k. keep well....

Here is a resource I found to help track my food intake of vitamin k. keep wel...

Beckysuec

•18 days ago

1 Reply

triple positive APS and Ozempic

I’m going to start Ozempic this week. Are there others on this form taking Ozempic and have you had any side effects that you think are related to and your...

I’m going to start Ozempic this week. Are there others on this form taking Oz...

Thick_Blood

•27 days ago

6 Replies

tracking vitamin K

I have been on warfarin for over 25 years. Recently, my INR has fluctuated significantly. I have never tracked my intake of vitamin k but made sure I had some...

I have been on warfarin for over 25 years. Recently, my INR has fluctuated signi...

Beckysuec

•28 days ago

8 Replies

insurance

I have APS just recently moved to get life insurance for to cover my mortgage but unfortunately been told I can’t have life insurance because of this...

I have APS just recently moved to get life insurance for to cover my mortgag...

johncarver

•1 month ago

6 Replies

getting paid to build our solutions

hi all! I thought I'd share this as someone might find it useful - it's a platform that pays patients like us to co create solutions that healthcare...

hi all! I thought I'd share this as someone might find it useful - it's a platfo...

rokis

•1 month ago

4 Replies

Citalopram

Hi folks, hope we’re all doing well! I just started on Citalopram, testing more regularly in case of any INR impact, wondered if anyone had experience or...

Hi folks, hope we’re all doing well! I just started on Citalopram, testing more...

sailorbaejon

•1 month ago

6 Replies

Shingles and other vaccines

Hi. I've just had my shingles vax and the after effects were horrible. I've now read that the second dose could be worse. I'm in two minds as to whether I...

Hi. I've just had my shingles vax and the after effects were horrible. I've now...

lucaldo

•1 month ago

11 Replies

My daily dose

This is my every Sunday chore, probably like many of you to fill your pill sorter. I’m quite anxious about supply chain and pending tariff’s . They could...

This is my every Sunday chore, probably like many of you to fill your pill sor...

Thick_Blood

•1 month ago

19 Replies

Different treatments (meds) for APS

Not all doctors put patients on warfarin. There are newer, safer meds out now. THANK GOD!!! Is anyone on something more current?

Not all doctors put patients on warfarin. There are newer, safer meds out now. T...

catlove123

•2 months ago

15 Replies

Anti-depressants for APS with cognitive dysfunction

I have recently lost my Partner and my life has become very traumatic. I have APS , I had 6 months ago a cardioversion which got my Arrhythmia sorted.I am on...

I have recently lost my Partner and my life has become very traumatic. I have A...

justlymostly

•2 months ago

13 Replies

UCL Prof Cohen

has anyone else been left a bit stranded since Prof Cohen left UCL?

Gembob75

•2 months ago

7 Replies

Lucy Letby Expert review and APS

Just been watching a presentation on TV reporting back in the work of a panel if international experts who have studied the deaths of the babies in this case....

Just been watching a presentation on TV reporting back in the work of a panel if...

Annslack

•3 months ago

9 Replies

Intermittent weakness in left leg & Arm

Hi I had a stroke 10 years ago and was diagnosed with APS 4 years later since then I have been on warfarin and aspirin. I have also suffered with migraines for...

Hi I had a stroke 10 years ago and was diagnosed with APS 4 years later since th...

SteveRN

•3 months ago

4 Replies

High Steroid Dose

My maintenance dose of Prednisone EC is 10mg. I know they like you at a maximum of 7.5mg but whenever I have tried to reduce below 10mg I struggle to get out...

My maintenance dose of Prednisone EC is 10mg. I know they like you at a maximum...

WendyWoo50

•3 months ago

3 Replies

sciatica

I do have APS and I know this is nothing to do with it but I need some help. I hurt my toe and was limping for a few days. Quickly I developed pain in my hip...

I do have APS and I know this is nothing to do with it but I need some help. I h...

WendyWoo50

•3 months ago

7 Replies

Does my son have APS

I guess I am reaching out to the men on here who have APS. I have it and my mother had it. I have a 36 year old son, his wife has spoken to me about certain...

I guess I am reaching out to the men on here who have APS. I have it and my mot...

Molly100

•3 months ago

13 Replies

Abdominal pain

Current medication is clopidogrel , atorvastatin and lansoprazole For past few years I’ve been getting abdominal pain mostly right side and back but I’ve had...

Current medication is clopidogrel , atorvastatin and lansoprazole For past few...

SimonHunter

•4 months ago

12 Replies

Azithromycin and APS?

I think I’ve taken it before but I am not sure. Has anyone else been prescribed it when you’ve had diag of Hughes? I am taking it for a very bad case of the...

I think I’ve taken it before but I am not sure. Has anyone else been prescribed ...

Wittycjt

•4 months ago

9 Replies

Flu & high INR

Hi all, so sorry it’s a long one but I want to give a warning to anyone on warfarin who contracts Influenza A, as I did 2 weeks ago, to make sure your INR is...

Hi all, so sorry it’s a long one but I want to give a warning to anyone on warfa...

Janeh1960

•4 months ago

11 Replies

Muscle Spasms or Cramps

Greetings from Arizona . Long time since I've been in here. Just curious if anyone else gets really bad cramps.. legs, calves, hips? Yesterday I yawned and...

Greetings from Arizona . Long time since I've been in here. Just curious if an...

Hughes-Comrade

•4 months ago

17 Replies

Oh Well

I’ve come to the conclusion that the ideal Christmas doesn’t include admission to hospital with a bleed on Boxing Day when I’m staying away from home.😢

I’ve come to the conclusion that the ideal Christmas doesn’t include admission t...

GillyA

•4 months ago

8 Replies

Lung collapse

Good evening - I was diagnosed with Hughes Disease after the birth of my daughter in 1995. It hasn’t, to my knowledge caused much of a problem over the years....

Good evening - I was diagnosed with Hughes Disease after the birth of my daughte...

Wild-Bird

•4 months ago

7 Replies

High APLs but no history of blood clots? Does that mean I still have APS?

Hi. I am a 22-year-old woman whose endocrinologist had two blood tests done 8 weeks apart and both tests showed I have high APLs levels. Strangely enough, I...

Hi. I am a 22-year-old woman whose endocrinologist had two blood tests done 8 we...

Strawberry_999

•4 months ago

10 Replies

CAD ?

I had an incident this week . All of a sudden I just could not get warm. Freezing. Like skiing in New Hampshire with frostbite. I found a source called...

I had an incident this week . All of a sudden I just could not get warm. Free...

BeachHaven123

•4 months ago

11 Replies

Seeking Support: APS Suspicions, Lymphocytic Vasculitis, and Persistent Skin Lesions (No Ulcerations)

Hello, everyone! I’m Alex, 41 years old, from Romania, and I’m looking for support and insights from others who may have faced similar challenges. Here’s a...

Hello, everyone! I’m Alex, 41 years old, from Romania, and I’m looking for supp...

Alex_ro

•4 months ago

5 Replies

Write a post or ask a question

Posts - Hughes Syndrome APS Forum | HealthUnlocked

Hughes Syndrome APS Forum

Long time with APS. Getting worse??

INR Results

APS Blood flowing backwards?

Experience with LDN?

bruising

list of vitamin k values in food

triple positive APS and Ozempic

tracking vitamin K

insurance

getting paid to build our solutions

Citalopram

Shingles and other vaccines

My daily dose

Different treatments (meds) for APS

Anti-depressants for APS with cognitive dysfunction

UCL Prof Cohen

Lucy Letby Expert review and APS

Intermittent weakness in left leg & Arm

High Steroid Dose

sciatica

Does my son have APS

Abdominal pain

Azithromycin and APS?

Flu & high INR

Muscle Spasms or Cramps

Oh Well

Lung collapse

High APLs but no history of blood clots? Does that mean I still have APS?

CAD ?

Seeking Support: APS Suspicions, Lymphocytic Vasculitis, and Persistent Skin Lesions (No Ulcerations)

Search posts

Pinned Posts

Latest poll

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

Topics

Archive