Posts - Hughes Syndrome APS Forum | HealthUnlocked

Hughes Syndrome APS Forum

10,356 members • 10,544 posts

All posts for July 2012

Just been diagnosed after 4 miscarriages not been told much should i be on anticoagulation

clumsy3

•12 years ago

3 Replies

can or carnt i fly as i have aps...what r the rules of flying meds etc ???

trying to plan my first holiday in 30 yrs ... we would llike to go abroad but dont know if i can take myh meds in and out of countries and if i can or carnt...

trying to plan my first holiday in 30 yrs ... we would llike to go abroad but do...

lollierai

•12 years ago

6 Replies

I think were getting there ............. Hughes syndrome mentioned in the Daily Mail again

Hi all a young woman suffered a stroke, and on the readers comments one lady suggests she be tested for hughes - seems us hughes' are everywhere!!!!

Hi all a young woman suffered a stroke, and on the readers comments one lady sug...

emmaj

•12 years ago

6 Replies

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

Hi folks, Have APS and OA been diagnosed 6 years. Going mad with knee pain at the moment, any ideas?

MaryH

•12 years ago

3 Replies

What is likely to happen to me? Please, any advice is needed.

I am really terrified, I am being tested for APS and other things, but only the APS test is going to show anything up, because I had to be given Heparin...

I am really terrified, I am being tested for APS and other things, but only the ...

anniesensi

•12 years ago

12 Replies

Confused!

Hi, I just fond out that im 9 weeks pregnant it was unplanned so i am now worried about the risks invoved to me and the baby. As my specialist has always...

Hi, I just fond out that im 9 weeks pregnant it was unplanned so i am now wo...

niknak

•12 years ago

4 Replies

LIVERPOOL WOMEN'S HOSPITAL 5 STAR TREATMENT

Hello Kim, I am so glad you have had good news at last after your misscarriages and things are looking up for you. I too would like to share my experience...

Hello Kim, I am so glad you have had good news at last after your misscarriages ...

Julieanne

•12 years ago

4 Replies

An invitation to participate in a research project

The Hughes Syndrome Foundation is supporting a research study being undertaken by Dr Karen Hambly from the School of Sport and Exercise Sciences at the...

The Hughes Syndrome Foundation is supporting a research study being undertaken b...

Hidden

•12 years ago

6 Replies

Just seen yet another heamo, oh lord!!!!

I have been diagnosed with aps after going round and round on the merry go round. I have now been told by her that she thinks I have vasculitus do you think...

I have been diagnosed with aps after going round and round on the merry go round...

traceylou

•12 years ago

9 Replies

Vitamins & Other Supplements

How many of you indulge intaking multiple vitamins & other supplements. I find that what I am taking really helps. I don't want to onstantly be asking my...

How many of you indulge intaking multiple vitamins & other supplements. I find ...

77tiger05

•12 years ago

10 Replies

3 Miscarriages, was feeling Lost, But had Fantastic Experience at the Liverpool Womens Hospital :)

Hi everyone, I am pretty new to this site, and got a diagnosis of APS a couple of months ago after years of wondering what was wrong with me. My symptoms...

Hi everyone, I am pretty new to this site, and got a diagnosis of APS a coupl...

Kimmichelle86

•12 years ago

23 Replies

Seen by haematologist - no further forward at moment

Hi everyone thanks for your help with preparing for appointment - I was well armed when I saw haematologist today. Not got much further really. Apparently when...

Hi everyone thanks for your help with preparing for appointment - I was well arm...

aliceblue

•12 years ago

7 Replies

AWOL - but back

Hi all, so sorry for not posting for some time - between personal issues, going on holiday (yes had health problems :( and) being admitted to hospital the day...

Hi all, so sorry for not posting for some time - between personal issues, going ...

Lesley_D

•12 years ago

4 Replies

Hair color?

Has anyone here given up hair color? I'm 49 and the doctors want me to stop coloring my hair. It's a tough, painful process to get it to my natural color. I...

Has anyone here given up hair color? I'm 49 and the doctors want me to stop col...

jean48

•12 years ago

24 Replies

For the ladies- makeup to cover skin imperfections?

IDK maybe some men too? Anyhow, I have discoloration on my face- sort of a hyper pigmentation mixed with hypo pigmentation- patches of dark and lightness....

IDK maybe some men too? Anyhow, I have discoloration on my face- sort of a h...

Hidden

•12 years ago

8 Replies

Trying to get a diagnosis

I have an appointment to see my consultant for follow-up tests and hopefully a diagnosis of Hughes / APS on 1st September. I have 6 weeks to lose some more...

I have an appointment to see my consultant for follow-up tests and hopefully a d...

SusieMac

•12 years ago

3 Replies

Pagets disease

Hi I am off to Hospital tomorrow for an infusion of Zoledronic acid for pagets disease just wondering if anyone else has Pagets I dont think it is associated...

Hi I am off to Hospital tomorrow for an infusion of Zoledronic acid for pagets ...

daisyd

•12 years ago

2 Replies

Back to the GP again

Back again today. I am so lucky with my doctor. He tested a urine sample and sent it off for analysis to see if I have a urinary infection. (never had one...

Back again today. I am so lucky with my doctor. He tested a urine sample and s...

panda60

•12 years ago

1 Reply

A + E & more tests .

Hi all, some of you may already know because of the post I put on facebook........I have been in hospital since Tuesday night. The pain has been getting...

Hi all, some of you may already know because of the post I put on facebook.........

Suzypawz

•12 years ago

21 Replies

Has anyone had treatment with BELIMUMAB for aps?

Ive had treatment of mabthera (rituximab) for 13 months, 2 doses per month....in my case, it helped a little but not as much as my doctor would have liked it....

Ive had treatment of mabthera (rituximab) for 13 months, 2 doses per month....in...

pamcelis

•12 years ago

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virus or lupus symptoms?

Feeling horrible today - tired, muddle headed and aching a bit like I've got a nasty virus coming on. But this happens from time to time and then goes away...

Feeling horrible today - tired, muddle headed and aching a bit like I've got a n...

panda60

•12 years ago

4 Replies

Heart Broken...Now what

Hi Folks, I had made contact with the London Bridge Hospital to see if I could get some help for me and my GP to manage my condition. First reply offered...

Hi Folks, I had made contact with the London Bridge Hospital to see if I coul...

Mystynzl

•12 years ago

11 Replies

Rituximab treatment? Just wondering if it is worth trying.

This is Skyllarks wife, I have APS. Just wondering what benifits people have had from the rituximab treatment? Just wondering if it is worth trying.

This is Skyllarks wife, I have APS. Just wondering what benifits people have had...

Skyllark

•12 years ago

3 Replies

Lets not forget about this very helpful petition started Re: Hughes Syndrome

Petitions like this one, can take off if people sign and and remember to pass them on via email and social networking sites for more signatures:...

Petitions like this one, can take off if people sign and and remember to pass t...

MaryF

Administrator•12 years ago

17 Replies

Epilepsy Medication

Hi just wondering if anyone else here as epilepsy. I think mine was caused by having Hughes syndrome. I only have small vacant spells. I am on a really high...

Hi just wondering if anyone else here as epilepsy. I think mine was caused by ha...

daisyd

•12 years ago

8 Replies

worried about a friend with TIA's

Hi everyone, i am worried about a friend of mine who has very extreme anaemia which they (doctors) do not seem able to resolve for her. On top of that she had...

Hi everyone, i am worried about a friend of mine who has very extreme anaemia wh...

Elisabeth

•12 years ago

2 Replies

Has anyone ever taken rituximab, Rituxan?

Skyllark

•12 years ago

9 Replies

Any one had a problem with bouts of double vision? I've been to my eye doctor, GP, and vascular doctor with no reason for it.

granmyty

•12 years ago

6 Replies

Migraines ... a pain in the 'you know what' or what !!! ?

I've been diagnosed with APS since 2006 and what a roller coaster ride THAT has been. It's been like a cascade; I'm just dealing with APS when I'm then told I...

I've been diagnosed with APS since 2006 and what a roller coaster ride THAT has ...

TreyBon64

•12 years ago

40 Replies

Does anyone experience a squeezing feeling in their brain, like someone is putting their hands around your brain and squeezing it?

iwantsimple

•12 years ago

43 Replies

Posts - Hughes Syndrome APS Forum | HealthUnlocked

Hughes Syndrome APS Forum

All posts for July 2012

Just been diagnosed after 4 miscarriages not been told much should i be on anticoagulation

can or carnt i fly as i have aps...what r the rules of flying meds etc ???

I think were getting there ............. Hughes syndrome mentioned in the Daily Mail again

Hi folks, Have APS and OA been diagnosed 6 years. Going mad with knee pain at the moment, any ideas?

What is likely to happen to me? Please, any advice is needed.

Confused!

LIVERPOOL WOMEN'S HOSPITAL 5 STAR TREATMENT

An invitation to participate in a research project

Just seen yet another heamo, oh lord!!!!

Vitamins & Other Supplements

3 Miscarriages, was feeling Lost, But had Fantastic Experience at the Liverpool Womens Hospital :)

Seen by haematologist - no further forward at moment

AWOL - but back

Hair color?

For the ladies- makeup to cover skin imperfections?

Trying to get a diagnosis

Pagets disease

Back to the GP again

A + E & more tests .

Has anyone had treatment with BELIMUMAB for aps?

virus or lupus symptoms?

Heart Broken...Now what

Rituximab treatment? Just wondering if it is worth trying.

Lets not forget about this very helpful petition started Re: Hughes Syndrome

Epilepsy Medication

worried about a friend with TIA's

Has anyone ever taken rituximab, Rituxan?

Any one had a problem with bouts of double vision? I've been to my eye doctor, GP, and vascular doctor with no reason for it.

Migraines ... a pain in the 'you know what' or what !!! ?

Does anyone experience a squeezing feeling in their brain, like someone is putting their hands around your brain and squeezing it?

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