Posts - Hughes Syndrome APS Forum | HealthUnlocked

Hughes Syndrome APS Forum

10,350 members • 10,538 posts

All posts for May 2019

INR RANT

Hi Folks I just need to have a moan! My INR has always been up and down and have got used to that, but recently it’s behaving like a bad boy. Had to stop for...

Hi Folks I just need to have a moan! My INR has always been up and down and hav...

judes

•5 years ago

8 Replies

inr change with exercise

I started exercising, walking on a treadmill, and taking warfarin, 6 mg and in one week my inr went from 2.3 to 1.6. They increased my dose to 7 mg and retest...

I started exercising, walking on a treadmill, and taking warfarin, 6 mg and in o...

chiefs2020

•5 years ago

5 Replies

Just wondering

I was diagnosed with APS/LAS in February, trying to keep my INR at 2.8 or more, was having trouble with it for about 6 months. I reading a lot of different...

I was diagnosed with APS/LAS in February, trying to keep my INR at 2.8 or more, ...

MrStickyblood

•5 years ago

15 Replies

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Thrombophilia clinic

Please has anyone been to a thrombophilia clinic and can explain what the clinic is all about, what they do there or what questions they ask you and what the...

Please has anyone been to a thrombophilia clinic and can explain what the clinic...

Nanny-shark

•5 years ago

10 Replies

Need an APS specialist in or near FortWorth Texas

Just got a letter stating my hematologist is leaving his office. His replacement deals more with cancer not blood disorders. 😑 I went without treatment...

Just got a letter stating my hematologist is leaving his office. His replacemen...

Raw57

•5 years ago

8 Replies

Aps

Hi I am joining this forum to help my wife who has aps and has been struggling with high inr levels. She has joined this group (nanny-shark)

Hi I am joining this forum to help my wife who has aps and has been struggling w...

Grandad-shark

•5 years ago

8 Replies

Be wary of dehydration

Weather is hot and if you have bloods drawn, many vials, it can make you very ill in what seems like a split second. Be sure to drink plenty of water rehydrate...

Weather is hot and if you have bloods drawn, many vials, it can make you very il...

Wittycjt

•5 years ago

13 Replies

Riddled with livedo but blood says no. I flare weekly with what ever this is. Hardly any respite

I am under guys hospital so I know I'm in good hands. My current diagnosis is UCTD. I started showing livedo on my legs last summer. Since then I have...

I am under guys hospital so I know I'm in good hands. My current diagnosis is U...

Lisalou19

•5 years ago

32 Replies

Antiphospholipid Syndrome Nephropathy: From Pathogenesis to Treatment

https://www.frontiersin.org/articles/10.3389/fimmu.2018.01181/full MaryF

MaryF

Administrator•5 years ago

4 Replies

Botox injection

Have Any APS Patients Had Botox Injections to Stop spasms into the Hand & Arm , Going this Tuesday to have this procedure carried out at my Local Hospital,...

Have Any APS Patients Had Botox Injections to Stop spasms into the Hand & Arm , ...

Markgammon06

•5 years ago

15 Replies

Interaction with Warfarin

Would anyone know of any interaction between Warfarin and aloe Vera tablets? Also, is it safe to take oral vitamin C? Many thanks

Would anyone know of any interaction between Warfarin and aloe Vera tablets? Als...

Suejane

•5 years ago

7 Replies

Feel like I'm getting nowhere.

Hi everyone, I wrote a post a few weeks back regarding my first heamotology appointment. I had the appointment and was told that my neurological symptoms are...

Hi everyone, I wrote a post a few weeks back regarding my first heamotology appo...

frenchiemum

•5 years ago

7 Replies

APS

Hi everyone, I just joined this forum after being informed about it by someone who is a member.Me and my sister were were diagnosed with APS 5years ago.I am...

Hi everyone, I just joined this forum after being informed about it by someone w...

Mosotho15

•5 years ago

3 Replies

St Thomas hospital

When I was first diagnosed I was lucky to see Beverley Hunt on referral from my local GP. Ive now moved to Northumberland and haven’t been to see Ms Hunt for...

When I was first diagnosed I was lucky to see Beverley Hunt on referral from my ...

Suejane

•5 years ago

3 Replies

Occluded tummy arteries

Good morning I was wondering if any of you had Coeliac artery and messentric arteries occlusion ? As a consequence I had a perforated bowel, have any of you...

Good morning I was wondering if any of you had Coeliac artery and messentric art...

TJSTICKYBLOOD

•5 years ago

9 Replies

Bruise

So is bruising an illness? If it is what do u call it. #Bruise #FirstTime #InEyes

So is bruising an illness? If it is what do u call it. #Bruise #FirstTime #InEye...

Black-Forest

•5 years ago

3 Replies

The Differences Between Childhood and Adult Onset Antiphospholipid Syndrome

https://www.frontiersin.org/articles/10.3389/fped.2018.00362/full MaryF

MaryF

Administrator•5 years ago

2 Replies

Confusion, Fog

Hi, I have Hughes and like many also suffer from confusion and a foggy brain. I sometimes get my words mixed up and tend to make no sense. My question is, do...

Hi, I have Hughes and like many also suffer from confusion and a foggy brain. I ...

LesJames

•5 years ago

15 Replies

Omega supplements

Does anyone on Warfarin take Omega supplements? I do not eat fish and I know it is important. If it ok to take?

Does anyone on Warfarin take Omega supplements? I do not eat fish and I know it ...

Ylmom

•5 years ago

11 Replies

Tuesday INR 13.9 Thursday INR 2.5 target 4

Has anyone had this sort of drastic drop if so how did you feel? I was shivering like a rigour my temp spiked at 104 (40) I couldn’t keep awake. I had a...

Has anyone had this sort of drastic drop if so how did you feel? I was shivering...

WendyWoo50

•5 years ago

25 Replies

New, have Hughes’, and am seeking insights on HRT versus bioidentical hormones

Hi everyone I am new here and was diagnosed with Hughes’ syndrome and Sjogren’s a decade ago. I am now being advised by a gynaecologist to start HRT...

Hi everyone I am new here and was diagnosed with Hughes’ syndrome and Sjogren’s...

Loubee22

•5 years ago

4 Replies

SUGAR LEVELS

How do I lower my A1C

Lori1127

•5 years ago

1 Reply

Do I need to take blood Thinners

I am lupus Anticoagulant positive ...viper venom Time ..I am due to fly to USA which is a 9 hr NIGHT flight.. do I need to take blood thinners injections as...

I am lupus Anticoagulant positive ...viper venom Time ..I am due to fly to USA ...

Stockham

•5 years ago

6 Replies

INR 13.9 today

I’ve just come home from the Warfarin clinic. A finger prick test showed 8+ then a Venus test showed 13.9. I was given oral vit K then sent home and told to be...

I’ve just come home from the Warfarin clinic. A finger prick test showed 8+ then...

WendyWoo50

•5 years ago

32 Replies

Advice on Anticoagulants

Hi everyone, it’s always humbling to see everyone’s journey and the positive and not so positive journey. I’m just curious. I was diagnosed in 2016 with APS...

Hi everyone, it’s always humbling to see everyone’s journey and the positive and...

Birky

•5 years ago

4 Replies

Tremors in hand and lip

I have APS and MCTD and have developed tremors in mostly my left hand and lip. Has anyone had this happen? I see my socialist on Monday and hope he has an...

I have APS and MCTD and have developed tremors in mostly my left hand and lip. ...

loretta1106

•5 years ago

12 Replies

Fragmin

Has anyone had trouble getting Fragmin? I’m having a minor surgical procedure on Tuesday so will be bridging with Fragmin The protocol where I live says...

Has anyone had trouble getting Fragmin? I’m having a minor surgical procedure ...

judes

•5 years ago

3 Replies

If Im already taking blood thInners will blood tests for Hughes be affected ?

Started on blood thinners a year ago due to blood clots, but really want to be tested for Hughes since I have factor iv, and multitude of all these things...

Started on blood thinners a year ago due to blood clots, but really want to be t...

Britchic

•5 years ago

13 Replies

Lupus Anticoagulant query- part 4

Hi All- just to update you following my previous posts (if you can be bothered to look back through them ) My specialist at London Bridge had requested a brain...

Hi All- just to update you following my previous posts (if you can be bothered t...

Chris1802p

•5 years ago

2 Replies

Lupus anticoagulant And Oral Biopsy

Hi could anyone help me please? I've been told I have a lupus anticoagulant in my blood. DVVRT last week was 1.31 DVVRT three months ago 1.33 Eight months ago...

Hi could anyone help me please? I've been told I have a lupus anticoagulant in m...

Sangu1

•5 years ago

4 Replies

Posts - Hughes Syndrome APS Forum | HealthUnlocked

Hughes Syndrome APS Forum

All posts for May 2019

INR RANT

inr change with exercise

Just wondering

Thrombophilia clinic

Need an APS specialist in or near FortWorth Texas

Aps

Be wary of dehydration

Riddled with livedo but blood says no. I flare weekly with what ever this is. Hardly any respite

Antiphospholipid Syndrome Nephropathy: From Pathogenesis to Treatment

Botox injection

Interaction with Warfarin

Feel like I'm getting nowhere.

APS

St Thomas hospital

Occluded tummy arteries

Bruise

The Differences Between Childhood and Adult Onset Antiphospholipid Syndrome

Confusion, Fog

Omega supplements

Tuesday INR 13.9 Thursday INR 2.5 target 4

New, have Hughes’, and am seeking insights on HRT versus bioidentical hormones

SUGAR LEVELS

Do I need to take blood Thinners

INR 13.9 today

Advice on Anticoagulants

Tremors in hand and lip

Fragmin

If Im already taking blood thInners will blood tests for Hughes be affected ?

Lupus Anticoagulant query- part 4

Lupus anticoagulant And Oral Biopsy

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