Posts - Hughes Syndrome APS Forum | HealthUnlocked

Hughes Syndrome APS Forum

10,356 members • 10,544 posts

All posts for October 2013

Can I ask who self tests and gets the strips on prescription?

My local GP practice is refusing to provide my test strips on prescription and even Roche, where I buy them from say they should be. I would like some...

My local GP practice is refusing to provide my test strips on prescription and e...

JanBad

•11 years ago

21 Replies

A Big welcome to TJSTICKBLOOD who has joined us as an ADMINISTRATOR

Thank you for joining us Tracy! Tracy brings to the table a full wealth of knowledge and experience of Hughes Syndrome and beyond, and also a great sense of...

Thank you for joining us Tracy! Tracy brings to the table a full wealth of know...

MaryF

Administrator•11 years ago

4 Replies

Differences in care - an experience shared

Over the last couple of days my eyes have been opened to differences of opinion within the medical profession when it comes to an aps diagnosis. I'm...

Over the last couple of days my eyes have been opened to differences of opinion ...

Maybells

•11 years ago

4 Replies

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

shortness of breath

Hi all, I have had shortness of breath for the last 4 years. Originally investigated for clots,all negative, then foubd to have right ventricular outflow...

Hi all, I have had shortness of breath for the last 4 years. Originally investig...

bevers1

•11 years ago

5 Replies

Has anyone else felt like they have been leftin limbo?

I saw Rheumy on Friday, unfortunately not the one I usually see, I walked into consultation room to find 5 junior docs also in the small room (not good for...

I saw Rheumy on Friday, unfortunately not the one I usually see, I walked into c...

jackjack2

•11 years ago

6 Replies

Who operates the HSF Twitter Account? and does anyone know who @tjBooster is?

Hidden

•11 years ago

7 Replies

How do you get proper treatment when the dr you see at Lupus Unit St T says he will see me in one year!

I apologise in advance for the rant.... I had my first appt at the Louise Coote Lupus Unit in July of this year after writing to Prof Hughes and having no...

I apologise in advance for the rant.... I had my first appt at the Louise Coote...

bluebutterfly101

•11 years ago

21 Replies

Prednisone for Hughes

Has anyone used Prednisone for Hughes? From H. Foundation pages I found that it helps "extreme fatigue". Have you experiences of that?

Has anyone used Prednisone for Hughes? From H. Foundation pages I found that it ...

Leenalina

•11 years ago

9 Replies

A very sad article from The Telegraph

I wonder if this family have Hughes Syndrome!...

MaryF

Administrator•11 years ago

8 Replies

On clopidogrel, going on a 4.5 hour flight - do I need more?

Hello all. We have just booked a last minute holiday in the half term - very excited! I've never travelled before since being diagnosed with APS. my diagnosis...

Hello all. We have just booked a last minute holiday in the half term - very exc...

Paleosooze

•11 years ago

4 Replies

I thought I had primary antisphospholipid syndrome but now Lupus joined the team

I have been in hospital two weeks and I was diagnosed with SLE at the National Hospital of Rhemautic Diseases in Bath. The SLE affected my lungs and my...

I have been in hospital two weeks and I was diagnosed with SLE at the National H...

Danimgw

•11 years ago

4 Replies

Splinter Haemorrhages in fingers?

Last year when Derek had his CAPS event, he suffered multiple splinter heamorrhages under all finger nails. I suspect it was part of what lead to his...

Last year when Derek had his CAPS event, he suffered multiple splinter heamorrha...

Tiggercat

•11 years ago

1 Reply

Detached

Am I on my own or do others get so frustrated they want to shout and maybe cry. Today, I'm feeling really detached from everything, the worlds passing by as...

Am I on my own or do others get so frustrated they want to shout and maybe cry. ...

Simon_james

•11 years ago

6 Replies

High inr

I have apls,lupus,I'm in remission of Hodgkin lymphoma my latest inr level was 9.8 I felt really tired, my head felt like it was in a vice

I have apls,lupus,I'm in remission of Hodgkin lymphoma my latest inr level was ...

Roxiechic

•11 years ago

15 Replies

Can factorV patients have symptoms of HS? I have severe headaches, fogginess, aches, tingling in face,pain around eyes. What type of dr?

CarolB22

•11 years ago

3 Replies

Radio Program which may be of interest

Lupus UK have posted the following. Tomorrow from 12-2pm BBC Three Counties Radio will be doing a feature on #lupus. It will include interviews with people...

Lupus UK have posted the following. Tomorrow from 12-2pm BBC Three Counties Radi...

tim47

•11 years ago

2 Replies

flight,

I should be packing really, just waiting to find a bit of energy, not up yet. We are off to the Maldives tomorrow, which I am sure will be wonderful but I am a...

I should be packing really, just waiting to find a bit of energy, not up yet. We...

daisyd

•11 years ago

4 Replies

Blue badge parking charges confusing

Before I had my blue badge car parks were straightforward. You paid and displayed or took your ticket on the way out. Multi stories remain the same but pay...

Before I had my blue badge car parks were straightforward. You paid and display...

panda60

•11 years ago

1 Reply

Very confused!

I'm so glad to have found this forum! Right, 5 years ago I had 2 miscarriages and during these pregnancies I also had heart palpitations. I was referred to a...

I'm so glad to have found this forum! Right, 5 years ago I had 2 miscarriages an...

jennifer350

•11 years ago

5 Replies

Christmas cards now available from the HSF charity

We wouldn't normally post so early about Christmas cards (it's only October!), but there has been an unprecedented demand and one card design has already sold...

We wouldn't normally post so early about Christmas cards (it's only October!), b...

Hidden

•11 years ago

4 Replies

Anyone have a list of APS specialist in the U.S.?

Nubianprof

•11 years ago

9 Replies

Is Professor Hughes out to make money ?

I mean we have to pay to see him and pay for information about APS. He clearly isn't like by other APS specialists and does not give out much information to...

I mean we have to pay to see him and pay for information about APS. He clearly i...

staceylou

•11 years ago

25 Replies

My appointment at St Thomas'

Yesterday I went to St T's. They have taken a load of blood tests. I asked if the antibeta2glycoprotein was negative this time would I lose my APS diagnosis -...

Yesterday I went to St T's. They have taken a load of blood tests. I asked if th...

stillwaiting

•11 years ago

14 Replies

Does Dr. Hughes ever come to the U.S. and hold conferences for Hematologists and Rheumatologists?

mudusa2774

•11 years ago

1 Reply

The flu vaccine for APS patients in the UK

The flu vaccine is available now at most GP practices in the UK. As APS is a long-term condition, the majority of GPs advise that we have the vaccine. If you...

The flu vaccine is available now at most GP practices in the UK. As APS is a lon...

Hidden

•11 years ago

26 Replies

I have APS IS IT RECOMMENDED TO WEAR A MEDICAL ALERT BRACELET. My Husband is concerned if something were to happen APS will not be detected

windsorGirl

•11 years ago

36 Replies

Hi all.I started taking Hydroxychloroquine 5 days ago.

Now I am very dizzy and have diarrhoea and for the last 2 nights I found I couldn't get to sleep even though I was so tired. My pains all over seemed worse...

Now I am very dizzy and have diarrhoea and for the last 2 nights I found I could...

Everdean

•11 years ago

6 Replies

A useful article from The Daily Mail, regarding 'gluten intolerance'

Many people with autoimmune seems to have this problem, especially with atuoimmune disease,and it is now being more recognized alongside simply a yes or no...

Many people with autoimmune seems to have this problem, especially with atuoimm...

MaryF

Administrator•11 years ago

2 Replies

Fatigue

What kind of fatigue do you suffer? Is it all this syndrome or something else also? It is a really difficult problem for me. I work from 9 am to 14 pm and...

What kind of fatigue do you suffer? Is it all this syndrome or something else al...

Leenalina

•11 years ago

12 Replies

Posts - Hughes Syndrome APS Forum | HealthUnlocked

Hughes Syndrome APS Forum

All posts for October 2013

Can I ask who self tests and gets the strips on prescription?

A Big welcome to TJSTICKBLOOD who has joined us as an ADMINISTRATOR

Differences in care - an experience shared

shortness of breath

Has anyone else felt like they have been leftin limbo?

Who operates the HSF Twitter Account? and does anyone know who @tjBooster is?

How do you get proper treatment when the dr you see at Lupus Unit St T says he will see me in one year!

Prednisone for Hughes

A very sad article from The Telegraph

On clopidogrel, going on a 4.5 hour flight - do I need more?

I thought I had primary antisphospholipid syndrome but now Lupus joined the team

Splinter Haemorrhages in fingers?

Detached

High inr

Can factorV patients have symptoms of HS? I have severe headaches, fogginess, aches, tingling in face,pain around eyes. What type of dr?

Radio Program which may be of interest

flight,

Blue badge parking charges confusing

Very confused!

Christmas cards now available from the HSF charity

Anyone have a list of APS specialist in the U.S.?

Is Professor Hughes out to make money ?

My appointment at St Thomas'

Does Dr. Hughes ever come to the U.S. and hold conferences for Hematologists and Rheumatologists?

The flu vaccine for APS patients in the UK

I have APS IS IT RECOMMENDED TO WEAR A MEDICAL ALERT BRACELET. My Husband is concerned if something were to happen APS will not be detected

Hi all.I started taking Hydroxychloroquine 5 days ago.

A useful article from The Daily Mail, regarding 'gluten intolerance'

Fatigue

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