Posts - Hughes Syndrome APS Forum | HealthUnlocked

Hughes Syndrome APS Forum

10,356 members • 10,544 posts

All posts for June 2014

Test results are in. What do they mean?

Does anyone know what the below test results mean? Aptt34.0sec Drvvt Screen Seconds 31.0 sec Antiphosphatidylserine Igg 3 GPS Antiphosphatidylserine Igm 6...

Does anyone know what the below test results mean? Aptt34.0sec Drvvt Screen Se...

Tranquility1

•10 years ago

9 Replies

Hi everyone, just wondering how many of you were initially referred to a neurologist for your APS symptoms. My main one was loss of vision.

In 2003 & 2006 I had head MRI,s, neurologist diagnosed silent migraine. (I never got headaches). Of course it was wrong diagnosis and was TIA's. In 2012...

In 2003 & 2006 I had head MRI,s, neurologist diagnosed silent migraine. (I never...

Good4u

•10 years ago

23 Replies

I saw this on ITV early on this morning - Patients being failed regarding Migraines

http://www.itv.com/goodmorningbritain/health/are-doctors-failing-migraine-patients MaryF

http://www.itv.com/goodmorningbritain/health/are-doctors-failing-migraine-patien...

MaryF

Administrator•10 years ago

1 Reply

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Has anyone been prescribed Rivaroxaban.

I have been taken off fondaparinux as it is on the red list of medicines and have been given Rivaroxaban. has anyone been given this med and how have you...

I have been taken off fondaparinux as it is on the red list of medicines and hav...

BrownChocolate

•10 years ago

7 Replies

Antiphospholipid Syndrome & Lupus? anyone have any advice or information? would be greatly appreciated.

I thought that the cause of my pregnancy loss at 21 weeks gestation, was because of lupus, but I received a letter from my consultant stating that...

I thought that the cause of my pregnancy loss at 21 weeks gestation, was because...

kirstyleigh

•10 years ago

9 Replies

I have been taking Prednisolone for a few years for Temporal Arteritis. Now just off them & having side effects. Anyone else had problems?

Can't keep awake, dropping to sleep, had panic attack & felt quite ill last night. Dizzy plus other stuff

Can't keep awake, dropping to sleep, had panic attack & felt quite ill last nigh...

CSat48

•10 years ago

5 Replies

Has anyone tried Prednisone?

Has anyone been given Prednisone (corticosteroid) for joint and muscle pain? How much did you take? Did it work for you? How long did you take it before you...

Has anyone been given Prednisone (corticosteroid) for joint and muscle pain? Ho...

Bell990

•10 years ago

15 Replies

Question; Does being on Coumadin INR range 2.0-3.0 mean I cannot get any new tattoos ?

bexter0021

•10 years ago

23 Replies

A thoughtful petition

Hi, Many people with Hughes Syndrome/APS end up with some sort of Thyroid problem. There is a narrow choice of treatment around, which does not work or...

Hi, Many people with Hughes Syndrome/APS end up with some sort of Thyroid proble...

MaryF

Administrator•10 years ago

11 Replies

Hi all.. I'm Jo (female) 37 I was Diognoised with (APS)Hughes syndrome three days ago! I've had two heart attacks and docs confirmed....

That APS was the cause! Can you all help me with what type of life/future I'm going to have now I have this condition?

That APS was the cause! Can you all help me with what type of life/future I'm go...

Jomack

•10 years ago

18 Replies

Hello all, I have. APS and take Warfarin and Hydroxychloroquine. I have just recently been diagnosed with sciatica. My rheumatologist thinks

Rufusandfrankie

•10 years ago

9 Replies

warfarin & kidneys continued

Hi all, thanks for your replies the other day. I have seen my consultant and my ureter is too large and inflamed, I have to have an urgent biopsy and maybe a...

Hi all, thanks for your replies the other day. I have seen my consultant and my ...

emmaj

•10 years ago

5 Replies

A few test results in. Still waiting on important ones.

Still waiting, waiting, waiting on the antibody tests. :-) The few results that have come back show high cholesterol (even though I am a vegetarian). I need...

Still waiting, waiting, waiting on the antibody tests. :-) The few results tha...

Tranquility1

•10 years ago

7 Replies

A round up of articles from UK

1. http://www.dailymail.co.uk/health/article-2655184/Unfit-Youre-likely-memory-problems.html 2....

1. http://www.dailymail.co.uk/health/article-2655184/Unfit-Youre-likely-memory...

MaryF

Administrator•10 years ago

2 Replies

A brave media volunteer - a great write up for The Hughes Syndrome Foundation which appeared in Parent Dish

http://www.parentdish.co.uk/pregnancy-and-birth/recurrent-miscarriage-hughes-syndrome-treatment-aspirin/ MaryF

http://www.parentdish.co.uk/pregnancy-and-birth/recurrent-miscarriage-hughes-syn...

MaryF

Administrator•10 years ago

2 Replies

Does stress contribute toward flareups

I don't know why this is happening, but I work in a very stressful job. Having been off for a week I started feeling more relaxed no symptoms. 1st day back...

I don't know why this is happening, but I work in a very stressful job. Having b...

Dee121

•10 years ago

13 Replies

Inr testing when a patient-- is not stable - never has been and having flares even with out inr's being off -

past episodes going from 2.4 to 9's in 3 or 4 day's now they want to push my testing out 2 weeks to a month--- this is just wrong and i need info in...

past episodes going from 2.4 to 9's in 3 or 4 day's now they want to push my...

jetjetjet

•10 years ago

3 Replies

Advice on non blanching rash with isolated prolonged APTT ^61

I am looking to find out some info if anyone can help. My god daughter who is a toddler was not too well yesterday and A&E first said could be hand, foot and...

I am looking to find out some info if anyone can help. My god daughter who is a ...

annie330

•10 years ago

3 Replies

Have you tested your children for APS and/or Factor V Leiden?

One of our three children has my Factor V Leiden (FVL) gene (she is 5 years old), yet it's our older teen daughter who has been hospitalized many times with...

One of our three children has my Factor V Leiden (FVL) gene (she is 5 years old)...

Tranquility1

•10 years ago

7 Replies

Kidneys and warfarin levels

Hi all, I was wondering if anyone else knows if kidney problems can affect the way your body regulates warfarin? I went to hospital with excruciating pains in...

Hi all, I was wondering if anyone else knows if kidney problems can affect the w...

emmaj

•10 years ago

9 Replies

Does anyone have information or experience with modafinil (provigil)?

The one symptom that has impacted my life more than any other symptom is fatigue. I have been reading about modafinil. It's main use is for people with...

The one symptom that has impacted my life more than any other symptom is fatigue...

Tranquility1

•10 years ago

6 Replies

Warfarin INR - too high but infrequent monitoring

Hi Folk, I'm just getting a little concerned that my local Anticoagulation Clinic is understaffed, under enormous pressure and is perhaps operating a policy...

Hi Folk, I'm just getting a little concerned that my local Anticoagulation Clin...

marco_mustard

•10 years ago

33 Replies

Does anyone have the link to the article by Professor Hughes about Plaquenil being better than generic versions of the medication?

I need to show my GP to ensure that he puts it on the prescription otherwise my pharmacist has to give me the generic one as it is cheaper. I discussed it...

I need to show my GP to ensure that he puts it on the prescription otherwise my ...

Elaine77c

•10 years ago

6 Replies

An interesting post, pinched from the HSF Facebook Site. (An interesting piece of history)

http://www.fasebj.org/content/28/4/1527.full MaryF

MaryF

Administrator•10 years ago

4 Replies

Great article - written for Thyroid UK for their quarterly 'Harmony Magazine' by Professor Graham Hughes

Thyroid’s “fellow travellers” In a recent issue of your magazine “Harmony”, a correspondent in the Q & A section wrote, “I have been diagnosed with...

Thyroid’s “fellow travellers” In a recent issue of your magazine “Harmony”, a c...

MaryF

Administrator•10 years ago

16 Replies

Hughes Syndrome Foundation charity annual Patients' Day YouTube recording available now

Our annual Patients' Day was a roaring success this year, with 83% of the attendees rating it as 'excellent' (and we didn't pay them to say that, honest!)....

Our annual Patients' Day was a roaring success this year, with 83% of the attend...

Hidden

•10 years ago

7 Replies

Requesting experience and updates from those who have been on Xarelto for APS for 6 months or longer.

Hello! I'm new to the group and like many of you found this group during my countless hours of internet research on APS/Hughes Syndrome. To give you a little...

Hello! I'm new to the group and like many of you found this group during my coun...

dancer4life

•10 years ago

14 Replies

CAN APS AFFECT EYES?

I have had a vision problem with right eye for just about 8 years. Several Ophthalmologists did periodic cat scans of retina, optic nerve, macula, cornea--all...

I have had a vision problem with right eye for just about 8 years. Several Opht...

mozelle

•10 years ago

40 Replies

Back to square one.

I apologise but this is likely to be a long post!. I finally got a diagnosis of aps earlier this year, at my last rheumatologist appt in Dec (before 2nd test...

I apologise but this is likely to be a long post!. I finally got a diagnosis of ...

PepperT

•10 years ago

21 Replies

Im to start warfarin in mid july ,Rhuematolosist suspect clotting of optic nerve ivw gca pmr vasculituis ,he thinks sticky blood ,hughes .

Im also type 1 diabetic ,and have addisons .Does the hughes make you tired I am knackered ,may be pred and methotrexate im on as well as insulin also.Does the...

Im also type 1 diabetic ,and have addisons .Does the hughes make you tired I am ...

mickt

•10 years ago

3 Replies

Posts - Hughes Syndrome APS Forum | HealthUnlocked

Hughes Syndrome APS Forum

All posts for June 2014

Test results are in. What do they mean?

Hi everyone, just wondering how many of you were initially referred to a neurologist for your APS symptoms. My main one was loss of vision.

I saw this on ITV early on this morning - Patients being failed regarding Migraines

Has anyone been prescribed Rivaroxaban.

Antiphospholipid Syndrome & Lupus? anyone have any advice or information? would be greatly appreciated.

I have been taking Prednisolone for a few years for Temporal Arteritis. Now just off them & having side effects. Anyone else had problems?

Has anyone tried Prednisone?

Question; Does being on Coumadin INR range 2.0-3.0 mean I cannot get any new tattoos ?

A thoughtful petition

Hi all.. I'm Jo (female) 37 I was Diognoised with (APS)Hughes syndrome three days ago! I've had two heart attacks and docs confirmed....

Hello all, I have. APS and take Warfarin and Hydroxychloroquine. I have just recently been diagnosed with sciatica. My rheumatologist thinks

warfarin & kidneys continued

A few test results in. Still waiting on important ones.

A round up of articles from UK

A brave media volunteer - a great write up for The Hughes Syndrome Foundation which appeared in Parent Dish

Does stress contribute toward flareups

Inr testing when a patient-- is not stable - never has been and having flares even with out inr's being off -

Advice on non blanching rash with isolated prolonged APTT ^61

Have you tested your children for APS and/or Factor V Leiden?

Kidneys and warfarin levels

Does anyone have information or experience with modafinil (provigil)?

Warfarin INR - too high but infrequent monitoring

Does anyone have the link to the article by Professor Hughes about Plaquenil being better than generic versions of the medication?

An interesting post, pinched from the HSF Facebook Site. (An interesting piece of history)

Great article - written for Thyroid UK for their quarterly 'Harmony Magazine' by Professor Graham Hughes

Hughes Syndrome Foundation charity annual Patients' Day YouTube recording available now

Requesting experience and updates from those who have been on Xarelto for APS for 6 months or longer.

CAN APS AFFECT EYES?

Back to square one.

Im to start warfarin in mid july ,Rhuematolosist suspect clotting of optic nerve ivw gca pmr vasculituis ,he thinks sticky blood ,hughes .

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