Posts - Hughes Syndrome APS Forum | HealthUnlocked

Hughes Syndrome APS Forum

10,356 members • 10,544 posts

All posts for March 2019

Lecithin phospholipids and APS

Hello everyone I hope all are well. I was just wondering if anyone knows about taking lecithin phospholipids and if it’s beneficial with those with APS. I have...

Hello everyone I hope all are well. I was just wondering if anyone knows about t...

Ayooshi

•5 years ago

8 Replies

How old is the oldest with this syndrome on one thread?

I would like to run a thread on how old you are and when were you diagnosed with Hughes, how old were you when you developed symptoms. I am 54 years old. I...

I would like to run a thread on how old you are and when were you diagnosed with...

ButterflyGy

•5 years ago

3 Replies

Epilepsy & APS advice please

I have been on carbamazapine & warfarin for 30 years but neurologist feels carbamazapine is making my iNR impossible to stabilise & has also caused Vit D...

I have been on carbamazapine & warfarin for 30 years but neurologist feels carba...

Lind8

•5 years ago

36 Replies

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Just putting it out there again

Hi all I wonder if you can help me at all I seem to keep drawing a blank. This all started in September last year 2 months after my mother passed (47) from...

Hi all I wonder if you can help me at all I seem to keep drawing a blank. This...

Buckley123

•5 years ago

5 Replies

Deltaparin and anti-XA

Was wondering if anybody knew about anti-xa and deltaparin. Got wife's results from Tuesday and her anti-xa was 1.18. Haematologist dropped dose of deltaparin,...

Was wondering if anybody knew about anti-xa and deltaparin. Got wife's results f...

geoff0702

•5 years ago

4 Replies

Is the Lovenox Anti Xa test the same as the Heparin Xa test?

Went to the lab yesterday 4 hours after I did my injection. They pulled up a bunch of Xa assays on the computer and showed me the screen. I selected the...

Went to the lab yesterday 4 hours after I did my injection. They pulled up a bun...

Holley

•5 years ago

6 Replies

Right or wrong??

I have been having some very bad infections the start of this year. Monday i was at my specialist... my blod tests are all fine. I told them i get pain in my...

I have been having some very bad infections the start of this year. Monday i wa...

murphylotte

•5 years ago

31 Replies

Blood test

Hello, like everyone i am having a hard time getting diagnosed and I'm waiting for appointments, just wondering what a positive beta 2 glycoprotein test means...

Hello, like everyone i am having a hard time getting diagnosed and I'm waiting f...

Scandal

•5 years ago

19 Replies

Advice for Haematology appointment please.

My Gp referred me to Haematology in December, My appoint is in a fortnight, Please can I have some advice on how to get the best out of this appointment?...

My Gp referred me to Haematology in December, My appoint is in a fortnight, Ple...

pinkyandperky

•5 years ago

5 Replies

So happy

Just an update for everyone that has taken time to reply to my messages. As of this morning I got my first positive pregnancy test in such a long time I went...

Just an update for everyone that has taken time to reply to my messages. As of t...

Clairemom

•5 years ago

26 Replies

Hughes Syndrome?

Hi all, I’ve had this weird skin pattern since I was a teenager and have spoken to my GP about it before who said I have ‘skin like a dead person’ -Nice!...

Hi all, I’ve had this weird skin pattern since I was a teenager and have spoke...

Dannii666

•5 years ago

17 Replies

More information. More confusion.

Hello everyone, I saw a rhuematologist (in South Africa) towards the end of February. I went because I was feeling bad since the beginning of February. His...

Hello everyone, I saw a rhuematologist (in South Africa) towards the end of Febr...

RubyAndBlue

•5 years ago

12 Replies

Hair Loss after surgery

I have had extreme hair loss after my dental implant (full top & bottom) surgery October 2018.

I have had extreme hair loss after my dental implant (full top & bottom) surgery...

DentalImplant18

•5 years ago

2 Replies

Self administrating my Warfarin almost!

I know lots will tell me this is irresponsible but it is checked by my GP. They are happy for me to suggest and take any dose changes I need based upon my INR...

I know lots will tell me this is irresponsible but it is checked by my GP. They ...

Greenmil3

•5 years ago

5 Replies

Hydroxychloroquine

In light of the recent article regarding Hydroxychloroquine and APS posted to the APS fB page, has anyone else been advised by St Thomas's Rheumatology...

In light of the recent article regarding Hydroxychloroquine and APS posted to th...

MLNC

•5 years ago

15 Replies

The new edition of my book

The new edition of my book 'Sticky Blood Explained' will soon be available to purchase through the charity website, the new shop for the website is currently...

The new edition of my book 'Sticky Blood Explained' will soon be available to pu...

KayPryszlak

•5 years ago

1 Reply

Probiotics and long term prednisone.

Good Morning to Everyone I have 3 questions....... Firstly, how many of you take probiotics daily purely for gut health, despite taking prednisone or any...

Good Morning to Everyone I have 3 questions....... Firstly, how many of you tak...

hihannula

•5 years ago

22 Replies

inexplicable inr

I live in Norway and every winter i have to incrase my warfarin dose. I travel a lot to Spain (flight time 4 h 45 min) and every time I Get there my Inr goes...

I live in Norway and every winter i have to incrase my warfarin dose. I travel a...

Kirsti67

•5 years ago

9 Replies

Menopause

Ok you lovely ladies please can you tell me what you took to ease it whilst on warfarin x

Ok you lovely ladies please can you tell me what you took to ease it whilst on w...

amy1808

•5 years ago

21 Replies

Aps and a suppressed thyroid.

Is it harmful to have a suppressed TSH ? I am hypothyroid and also have hypoparathyroidism. My endocrinologist keeps me over medicated but I am concerned about...

Is it harmful to have a suppressed TSH ? I am hypothyroid and also have hypopara...

Jillymo

•5 years ago

4 Replies

Diet Replacement

I have a history of 2 blood clots, with an INR of 3 - 4, target 3.5. I am triple positive for the antibodies. Food with vit.K in cause eratic INR, so I am at...

I have a history of 2 blood clots, with an INR of 3 - 4, target 3.5. I am triple...

Zamalek

•5 years ago

6 Replies

Hughes Syndrome/APS and testing for Epilepsy

https://journals.sagepub.com/doi/abs/10.1177/0961203316651747?journalCode=lupa&fbclid=IwAR1GviHWzYvZVyQHBkVm_bnKeBOzl49zLDB520_2BXVGQPg5Jlcdi5U7dMQ MaryF

https://journals.sagepub.com/doi/abs/10.1177/0961203316651747?journalCode=lupa&f...

MaryF

Administrator•5 years ago

1 Reply

Looking for some help please - not diagnosed

Hello I'm new here and you all seem to try your best to help with questions so I thought I'd go ahead and post to see if anyone can help me. I don't want to...

Hello I'm new here and you all seem to try your best to help with questions so I...

Mand25

•5 years ago

18 Replies

Constant Pain in right thigh/hip.

Hi. Was wondering if anyone had problems getting doctors & specialists to listen to your condition? I had 5 miscarriages before I had tests for APS. Then I...

Hi. Was wondering if anyone had problems getting doctors & specialists to listen...

froggy10

•5 years ago

26 Replies

Anyone know id NAC Sustain is Ok to take if you have APS

I was diagnosed with APS Syndrome over a year ago. I am Asymptomatic and never had a blood clot so the doctor does not want to put me on a blood thinner....

I was diagnosed with APS Syndrome over a year ago. I am Asymptomatic and never h...

leamercedes22

•5 years ago

8 Replies

INR Machine

Hello All!! I’m kinda excited... My Dr approved me for a Protine/INR Machine! I test once a week. This is what I feel good about. But..... does anyone have...

Hello All!! I’m kinda excited... My Dr approved me for a Protine/INR Machine! I...

GirlfromTennessee

•5 years ago

38 Replies

Swallowing

Any body in here lost the ability to swollen properly, it’s happened twice now , my GP in a flap as to what to do so doing test to rule out heart problem as it...

Any body in here lost the ability to swollen properly, it’s happened twice now ,...

amy1808

•5 years ago

20 Replies

Been feeling really bad for a long time.

I have been having a very hard time with my APS. I feel so bad most mornings I don’t even want to get dreased all I want is lay down and if possible sleep. My...

I have been having a very hard time with my APS. I feel so bad most mornings I d...

SoulRebel-APS

•5 years ago

23 Replies

APS Treatment in Oxford

I am female, in my early 70's and diagnosed with SLE, APS and Evans Syndrome. I am planning to move, probably to the Oxford area. Can anybody help me with...

I am female, in my early 70's and diagnosed with SLE, APS and Evans Syndrome. I ...

Hidden

•5 years ago

3 Replies

Posts - Hughes Syndrome APS Forum | HealthUnlocked

Hughes Syndrome APS Forum

All posts for March 2019

Lecithin phospholipids and APS

How old is the oldest with this syndrome on one thread?

Epilepsy & APS advice please

Just putting it out there again

Deltaparin and anti-XA

Is the Lovenox Anti Xa test the same as the Heparin Xa test?

Right or wrong??

Blood test

Advice for Haematology appointment please.

So happy

Hughes Syndrome?

More information. More confusion.

Hair Loss after surgery

More questions!

Self administrating my Warfarin almost!

Hydroxychloroquine

The new edition of my book

Probiotics and long term prednisone.

inexplicable inr

Menopause

Aps and a suppressed thyroid.

Diet Replacement

Hughes Syndrome/APS and testing for Epilepsy

Looking for some help please - not diagnosed

Constant Pain in right thigh/hip.

Anyone know id NAC Sustain is Ok to take if you have APS

INR Machine

Swallowing

Been feeling really bad for a long time.

APS Treatment in Oxford

Search posts

Pinned Posts

Latest poll

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

Topics

Archive

Posts - Hughes Syndrome APS Forum | HealthUnlocked

Hughes Syndrome APS Forum

All posts for March 2019

Lecithin phospholipids and APS

How old is the oldest with this syndrome on one thread?

Epilepsy & APS advice please

Just putting it out there again

Deltaparin and anti-XA

Is the Lovenox Anti Xa test the same as the Heparin Xa test?

Right or wrong??

Blood test

Advice for Haematology appointment please.​

So happy

Hughes Syndrome?

More information. More confusion.

Hair Loss after surgery

More questions!

Self administrating my Warfarin almost!

Hydroxychloroquine

The new edition of my book

Probiotics and long term prednisone.

inexplicable inr

Menopause

Aps and a suppressed thyroid.

Diet Replacement

Hughes Syndrome/APS and testing for Epilepsy

Looking for some help please - not diagnosed

Constant Pain in right thigh/hip.

Anyone know id NAC Sustain is Ok to take if you have APS

INR Machine

Swallowing

Been feeling really bad for a long time.

APS Treatment in Oxford

Search posts

Pinned Posts

Latest poll

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

Topics

Archive

Advice for Haematology appointment please.