Posts - Hughes Syndrome APS Forum | HealthUnlocked

Hughes Syndrome APS Forum

10,443 members•10,641 posts

All posts for November 2017

APS and BP

I have been placed on two medications for bp. However, when it is high and I rest, elevate feet, it can go up within the hour. If I walk my dog slowly, it...

I have been placed on two medications for bp. However, when it is high and I re...

Salstar

•7 years ago

10 Replies

Professor Graham Hughes' Blog October 2017

BLOG – October 2017 In October, I was a guest speaker in Porto, Portugal. It was at an international immunology meeting, and one of the 2 days...

BLOG – October 2017 In October, I was a guest speaker in Porto, Portugal. It wa...

MaryF

Administrator•7 years ago

14 Replies

Lupus /APS face rash.

This was my face yesterday after trying to have a wash post op. My IVC Filter was removed on Tuesday in what turned out to be a very traumatic procedure. My...

This was my face yesterday after trying to have a wash post op. My IVC Filter wa...

leakeadea

•7 years ago

45 Replies

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

IVC Filter/Clot Catcher Removal after 12 years, surgeon said its the worst case he'd ever seen! Sticky blood & filters are a bad combo.

So I managed to copy this onto a new post. I've still not seen the thrombosis /haematology doctors but apparently they are coming to see me today, where have I...

So I managed to copy this onto a new post. I've still not seen the thrombosis /h...

leakeadea

•7 years ago

22 Replies

Personality changes?

If the old pre-illness me met the current me then I dont think he would recognise him and might not want to spend too long over a pint with him. I dont know if...

If the old pre-illness me met the current me then I dont think he would recognis...

charlieab

•7 years ago

21 Replies

Venous or finger testing

Hi any help would be great I am 36 and been having venous bloods taken from me once or twice a week for the last 16 yrs for my INR , this is getting very...

Hi any help would be great I am 36 and been having venous bloods taken from me o...

Hidden

•7 years ago

11 Replies

Cranberry Sauce

A trivial question tonight friend's... so Christmas and turkey is coming! 🎄 My question is : while on warfarin are we allowed cranberry sauce? If not are we...

A trivial question tonight friend's... so Christmas and turkey is coming! 🎄 My ...

WendyWoo50

•7 years ago

16 Replies

Question about INR

Hello new friends, I am trying to understand my condition and have been reading so many of your posts. I have currently been told to take aspirin daily. I have...

Hello new friends, I am trying to understand my condition and have been reading ...

Esolt

•7 years ago

12 Replies

Happy Birthday Graham Hughes

Happy birthday to a very special man and dear friend of ours, Professor Graham Hughes, Consultant Rheumatologist & Head of the London Lupus Centre, London...

Happy birthday to a very special man and dear friend of ours, Professor Graham H...

SuzanneJ

•7 years ago

10 Replies

london bridge appointment outcome

Hi Just reporting back on trip to London Bridge hospital this week. The staff were friendly and the consultant seemed thorough and helped move things forward a...

Hi Just reporting back on trip to London Bridge hospital this week. The staff we...

charlieab

•7 years ago

33 Replies

DRVVT range

Hello, I believe the DRVVT (Dilute Russell's Viper Venom Time) is one of the tests used to screen for the Lupus Anticoagulant. A while back I posted a question...

Hello, I believe the DRVVT (Dilute Russell's Viper Venom Time) is one of the tes...

tathougies

•7 years ago

2 Replies

Would plasmapheresis be an option?

KellyInTexas there is an article “ plasmapheresis for the Antiphospholipid patient.” Google this I nformation. Maybe clear out the Antiphospholipids reeking...

KellyInTexas there is an article “ plasmapheresis for the Antiphospholipid pati...

Wittycjt

•7 years ago

27 Replies

Very informative article written by Prof Graham Hughes:

Google: “ APS: what rheumatologists should know about Hughes Syndrome” from -The Rheumatologist. Feel free to put in the link I don’t know how. Very good...

Google: “ APS: what rheumatologists should know about Hughes Syndrome” from -The...

Wittycjt

•7 years ago

7 Replies

November INR Chart:

My treating neurologist who prescribed the plavix ordered a 7 day “ double test “ vein value against my home checker coagucheck Xs . The finger prick value is...

My treating neurologist who prescribed the plavix ordered a 7 day “ double test ...

KellyInTexas

Administrator•7 years ago

28 Replies

Unusual Presentation of Livedo? This is also happening right now during my “ clotting rush” along with my classic livedo. ( INR is at 4.0)

I can get this at any time. Often a red pin prick dot will be in center of white balanced ring. Never itches. This was last night at our pharmacy. Walgreens (...

I can get this at any time. Often a red pin prick dot will be in center of white...

KellyInTexas

Administrator•7 years ago

15 Replies

Part II to Previos Post On Wide spread clotting/ Immuno Suppression Being Advised And Warfarin Abandoned. (?!?!)

I have mentioned many times the multiple large DVT’s I have experienced in my Right Brachial. They occupy the entire length of the Brachial - which on a tiny...

I have mentioned many times the multiple large DVT’s I have experienced in my Ri...

KellyInTexas

Administrator•7 years ago

17 Replies

Widespread Clotting despite High INR: Adandondment of Warfarin being advised: Begin instead begin IV Cytoxan, Antiplatet, and DOAC -

This is the back of my leg ( just above the bend of my knee ) yesterday. My arms are clotting also. When I clot, I tend to clot “ every where at once.” It’s...

This is the back of my leg ( just above the bend of my knee ) yesterday. My arms...

KellyInTexas

Administrator•7 years ago

21 Replies

New diagnosis - not sure if there is something else too.

I was just diagnosed a week ago. I have Raynaud's, always cold hands and feet but never thought anything of it. This summer I started experiencing pain in my...

I was just diagnosed a week ago. I have Raynaud's, always cold hands and feet bu...

CBooker

•7 years ago

14 Replies

Endometrial Ablation Experience?

Hi, I have been living with APS for just over five years and frequently read the posts here with great interest, I have learnt a lot from you all 😀 I am 49...

Hi, I have been living with APS for just over five years and frequently read the...

LoveSeaside

•7 years ago

9 Replies

Mirena Coil.......

Hi I really wanted and advice or suggestions as am very fed up now. I finally had my mirena coil fitted at the end of October for heavy bleeding (caused by the...

Hi I really wanted and advice or suggestions as am very fed up now. I finally ha...

chelb29

•7 years ago

9 Replies

Leg constant cramping

Hello to all, it has been awhile since my last post. I am on the fence today as to go into the clinic or not, I'm sure double checking is always the answer...

Hello to all, it has been awhile since my last post. I am on the fence today as...

beccafullcircle

•7 years ago

19 Replies

Cold feeling

Hi there and I hope everyone is feeling as well as possible :-) I support someone with APS and have a quick question: does anyone else experience very cold...

Hi there and I hope everyone is feeling as well as possible :-) I support someo...

JimmyandPaddy

•7 years ago

3 Replies

cold at night

Hi everyone, I am new to this and have many questions, many already answered by looking through here, so thank you for having this forum. One more - when...

Hi everyone, I am new to this and have many questions, many already answered by ...

Esolt

•7 years ago

22 Replies

Borderline Positive lupus anticoagulant, other aps antibodies negative

Had 2 twin pregnancy losses , of which one of the twins in my recent pregnancy which I conceived through ivf ,had turners syndrome, hence terminated. I have...

Had 2 twin pregnancy losses , of which one of the twins in my recent pregnancy w...

Sanjumax

•7 years ago

5 Replies

Aziophrine and prednisolone

Are these drugs use to treat sticky blood or lupus or both ???

Tim_Thorpe

•7 years ago

8 Replies

Clinical outcomes of prolonged anticoagulation with rivaroxaban after unprovoked venous thromboembolism

New research outcome on prolonged use of rivarovaban giving further protection from clots without an increase of bleeding. Encouraging for us with APS....

New research outcome on prolonged use of rivarovaban giving further protection f...

HollyHeski

Administrator•7 years ago

4 Replies

Warfarin and Plavix

Good morning everyone As a new member I would like to please ask a couple of questions. A few months ago after loosing two fingers I was diagnosed with thick...

Good morning everyone As a new member I would like to please ask a couple of que...

Benna1

•7 years ago

4 Replies

Another slant on pollution

http://www.telegraph.co.uk/science/2017/11/14/air-pollution-bigger-risk-people-witha-b-ab-blood-types-study/ MaryF

http://www.telegraph.co.uk/science/2017/11/14/air-pollution-bigger-risk-people-w...

MaryF

Administrator•7 years ago

1 Reply

Weird bruising on finger and toes update....

Well I finally got an app with the doc and explained to her about my chest pain and bruising on my finger and toes. She was more concerned with my chest pain...

Well I finally got an app with the doc and explained to her about my chest pain ...

tiredmum

•7 years ago

2 Replies

Clexiane

Need some information update! According to my Doctor their is a National shortage on Clexaine and their is a new supplier! I’m trying not to worry but can any...

Need some information update! According to my Doctor their is a National shorta...

Teacher71

•7 years ago

6 Replies

Posts - Hughes Syndrome APS Forum | HealthUnlocked

Hughes Syndrome APS Forum

All posts for November 2017

APS and BP

Professor Graham Hughes' Blog October 2017

Lupus /APS face rash.

IVC Filter/Clot Catcher Removal after 12 years, surgeon said its the worst case he'd ever seen! Sticky blood & filters are a bad combo.

Personality changes?

Venous or finger testing

Cranberry Sauce

Question about INR

Happy Birthday Graham Hughes

london bridge appointment outcome

DRVVT range

Would plasmapheresis be an option?

Very informative article written by Prof Graham Hughes:

November INR Chart:

Unusual Presentation of Livedo? This is also happening right now during my “ clotting rush” along with my classic livedo. ( INR is at 4.0)

Part II to Previos Post On Wide spread clotting/ Immuno Suppression Being Advised And Warfarin Abandoned. (?!?!)

Widespread Clotting despite High INR: Adandondment of Warfarin being advised: Begin instead begin IV Cytoxan, Antiplatet, and DOAC -

New diagnosis - not sure if there is something else too.

Endometrial Ablation Experience?

Mirena Coil.......

Leg constant cramping

Cold feeling

cold at night

Borderline Positive lupus anticoagulant, other aps antibodies negative

Aziophrine and prednisolone

Clinical outcomes of prolonged anticoagulation with rivaroxaban after unprovoked venous thromboembolism

Warfarin and Plavix

Another slant on pollution

Weird bruising on finger and toes update....

Clexiane

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