Posts - Hughes Syndrome APS Forum | HealthUnlocked

Hughes Syndrome APS Forum

10,443 members•10,641 posts

All posts for September 2019

Balance issues

Just wondering if any kind of link as whem I shower I struggle keep my balance and sometimes whie out and about feel as I going to fall for no apparent...

Just wondering if any kind of link as whem I shower I struggle keep my balance a...

rach1081985

•5 years ago

27 Replies

Can we think of another word instead of using disability

Aka difficulties.. any suggestions?

Wittycjt

•5 years ago

11 Replies

Lost Memory

What if my mother said "I lost my memory" How can I deal with her saying that? She is 86 years old being very dependent on my sister who is a "power of...

What if my mother said "I lost my memory" How can I deal with her saying that? ...

avilio54

•5 years ago

3 Replies

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update on my quest.

Hi, sorry it has been a while, I have now had my second appointment at Derriford and a lovely letter from Guys and ST Thomas'. The letter stated that as I have...

Hi, sorry it has been a while, I have now had my second appointment at Derriford...

pinkyandperky

•5 years ago

8 Replies

Folate test

I asked my hematologist if he would please order a folate test and he replied back that he orders the following which is better than the test I asked for:...

I asked my hematologist if he would please order a folate test and he replied ba...

Hughes-Comrade

•5 years ago

2 Replies

GHIC Patient Day

A bit belated but a couple of weeks ago I went to the GHIC patient day #The Big 3 . I’d urge anyone that can make them to go . Guest speakers were informative...

A bit belated but a couple of weeks ago I went to the GHIC patient day #The Big ...

TJSTICKYBLOOD

•5 years ago

1 Reply

Study Confirms Urgent, Unmet Needs in Childhood-Onset Lupus

Study Confirms Urgent, Unmet Needs in Childhood-Onset Lupus Experts identify lupus nephritis and neuropsychiatric disease among highest research priority...

Study Confirms Urgent, Unmet Needs in Childhood-Onset Lupus Experts identify lup...

lupus-support1

Administrator•5 years ago

1 Reply

Alendronate Shows Promise as Maintenance Therapy for Osteoporosis

Rheumatology Network Editorial Staff September 24, 2019 The bisphosphonate alendronate (Binosto and Fosamax) can effectively maintain the gains in bone...

Rheumatology Network Editorial Staff September 24, 2019 The bisphosphonate al...

lupus-support1

Administrator•5 years ago

5 Replies

Warfarin May Heighten Risk of Osteoporosis in Afib Patients

Rheumatology Network Editorial Staff September 24, 2019 Patients with atrial fibrillation are commonly prescribed oral anticoagulants for stroke prevention,...

Rheumatology Network Editorial Staff September 24, 2019 Patients with atrial ...

lupus-support1

Administrator•5 years ago

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Madness

Does anyone else feel like they are going mad with no end to problems and little or no help.

Does anyone else feel like they are going mad with no end to problems and little...

Greenmil3

•5 years ago

28 Replies

Pregnant after recurrent miscarriage and feeling scared/anxious

Hi everyone, it's been a while since I posted after my last miscarriage ( the third one) in January. I found out today that I'm pregnant. I've spent the last...

Hi everyone, it's been a while since I posted after my last miscarriage ( the th...

Hollyhughes

•5 years ago

8 Replies

Epstein-Barr Virus Reactivation May Trigger SLE in People at Risk, Study Suggests

SEPTEMBER 18, 2019 BY JOSE MARQUES LOPES, PHD Reactivation of the Epstein-Barr virus (EBV) may result in systemic lupus erythematosus (SLE) in at-risk...

SEPTEMBER 18, 2019 BY JOSE MARQUES LOPES, PHD Reactivation of the Epstein-Barr...

lupus-support1

Administrator•5 years ago

4 Replies

Progress

Went to see Gp about fast track my appointment at Gynaecology and symptoms worsening and he's booked me 4 urgent scan... So should get letter this week.......

Went to see Gp about fast track my appointment at Gynaecology and symptoms worse...

rach1081985

•5 years ago

6 Replies

Finally got to see a Rheumatologist.

After 2 positive Lupus anticoagulant tests 12 weeks apart my GP agreed to refer me. This was about 8 months ago. I finally found out why I was waiting so...

After 2 positive Lupus anticoagulant tests 12 weeks apart my GP agreed to refer ...

Newcastlelad

•5 years ago

13 Replies

How can i

Is there anyway I can raise awareness of Hughes and tell my story

rach1081985

•5 years ago

11 Replies

Rheumatology, the journal of the British Society for Rheumatology, is offering free access (through December 31) to its ten most highly cite

Rheumatology, the journal of the British Society for Rheumatology, is offering free access (through December 31) to its ten most highly cited papers of...

Rheumatology, the journal of the British Society for Rheumatology, is offering f...

lupus-support1

Administrator•5 years ago

1 Reply

The British Society for Rheumatology guideline for the management of systemic lupus erythematosus in adults

The British Society for Rheumatology guideline for the management of systemic lupus erythematosus in adults Caroline Gordon, Maame-Boatemaa Amissah-Arthur,...

The British Society for Rheumatology guideline for the management of systemic lu...

lupus-support1

Administrator•5 years ago

4 Replies

Good news at last

I saw a lovely rheumatologist in my local hospital yesterday. He confirmed that I don’t have Lupus. He’s knowledgable with APS and is going to write to Prof De...

I saw a lovely rheumatologist in my local hospital yesterday. He confirmed that ...

Stereolover

•5 years ago

10 Replies

IRN MACHINE

Does anyone here have there own IRN machine to test at home? If so , did you pay out of pocket for it or did your insurance cover the cost? If insurance did...

Does anyone here have there own IRN machine to test at home? If so , did you pay...

Bubbalover

•5 years ago

5 Replies

Finger-prick machine inaccurate readings

When I was first diagnosed with antiphospholipid syndrome several years ago, I was put on warfarin and had to go weekly for finger-prick test. My readings were...

When I was first diagnosed with antiphospholipid syndrome several years ago, I w...

CallMeGinger

•5 years ago

4 Replies

APS Conference this Friday in Manchester uk. Anyone else going?

Are any other patients going to the APLS International Conference patients day in Manchester UK this Friday. It would be good to meet you.

Are any other patients going to the APLS International Conference patients day ...

purple

•5 years ago

11 Replies

Stomach and Liver Pain

Hello, I have APS which was fiquired out in 2015. I had several case of a a vascular necrosis and a lot of the same issues of everybody else. I am having a...

Hello, I have APS which was fiquired out in 2015. I had several case of a a vas...

Scottc

•5 years ago

2 Replies

Vertigo

Hi guys and gals Has anyone experienced vertigo with APS . Had it on and off recently, really weird , dizzy when sitting up , looking up and getting dizzy but...

Hi guys and gals Has anyone experienced vertigo with APS . Had it on and off re...

amy1808

•5 years ago

24 Replies

HRT ??

Just wondering if anyone on here has been prescribed HRT since diagnosis.... My GP has suggested it to help with my osteoporosis but the rheumatologist is...

Just wondering if anyone on here has been prescribed HRT since diagnosis.... My ...

Tmal1987

•5 years ago

15 Replies

Mechanical heart valve

Hi there Does anyone on this site have a mechanical heart valve, and if so has it calcified? Mine has and I can’t find an answer as to wether or not I can...

Hi there Does anyone on this site have a mechanical heart valve, and if so has...

hihannula

•5 years ago

30 Replies

D-dimmer test

I am triple positive APS. As far as know I have never had a d-dimmer test. Is it something I should be having done since I still have TIA’s. I was just...

I am triple positive APS. As far as know I have never had a d-dimmer test. Is it...

SoulRebel-APS

•5 years ago

6 Replies

,😢not happy

My gynaecology appointment has been cancelled now til November only option I think I have is to go a and e again

My gynaecology appointment has been cancelled now til November only option I thi...

rach1081985

•5 years ago

6 Replies

Update from last post

Hey everybody, just a little update from my post the other day about giving up work....the stress I had before about whether or not it was the right thing to...

Hey everybody, just a little update from my post the other day about giving up w...

JAZZYMIN92

•5 years ago

6 Replies

Gabapentin for neuropathy

Hello out there...I have APS and have been on this wonderful forum for a few years now. I've always found it so helpful and full of support through this life...

Hello out there...I have APS and have been on this wonderful forum for a few yea...

beccafullcircle

•5 years ago

27 Replies

Stuck neck

Well Friday the 6 Th i evening - I had my head and neck get stuck because of my Kissing Osteophyte's - they stuck hard and fast with a horrible snap to get...

Well Friday the 6 Th i evening - I had my head and neck get stuck because of my ...

jetjetjet

•5 years ago

28 Replies

Posts - Hughes Syndrome APS Forum | HealthUnlocked

Hughes Syndrome APS Forum

All posts for September 2019

Balance issues

Can we think of another word instead of using disability

Lost Memory

update on my quest.

Folate test

GHIC Patient Day

Study Confirms Urgent, Unmet Needs in Childhood-Onset Lupus

Alendronate Shows Promise as Maintenance Therapy for Osteoporosis

Warfarin May Heighten Risk of Osteoporosis in Afib Patients

Madness

Pregnant after recurrent miscarriage and feeling scared/anxious

Epstein-Barr Virus Reactivation May Trigger SLE in People at Risk, Study Suggests

Progress

Finally got to see a Rheumatologist.

How can i

Rheumatology, the journal of the British Society for Rheumatology, is offering free access (through December 31) to its ten most highly cite

The British Society for Rheumatology guideline for the management of systemic lupus erythematosus in adults

Good news at last

IRN MACHINE

Finger-prick machine inaccurate readings

APS Conference this Friday in Manchester uk. Anyone else going?

Stomach and Liver Pain

Vertigo

HRT ??

Mechanical heart valve

D-dimmer test

,😢not happy

Update from last post

Gabapentin for neuropathy

Stuck neck

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