Posts - Hughes Syndrome APS Forum | HealthUnlocked

Hughes Syndrome APS Forum

10,443 members•10,641 posts

All posts for August 2014

Gamma GT question?

I've been back to the doctor to discuss my recent bloods (not my usual doctor of course, can never get to see her lately). It appears the Gamma GT enzyme in...

I've been back to the doctor to discuss my recent bloods (not my usual doctor of...

Nat1969

•10 years ago

7 Replies

Got PIP award!

Hi everyone. Just wanted to share my good news. After a long wait, I had my ATOS consultation on 8th August and have just received notification that I've...

Hi everyone. Just wanted to share my good news. After a long wait, I had my AT...

Nat1969

•10 years ago

12 Replies

APS/Kidney/Bladder involvement

Hi. Could I ask how many people with APS/Lupus have kidney/bladder involvement? I have just had a ultra sound on these areas. Blood and occasional protein in...

Hi. Could I ask how many people with APS/Lupus have kidney/bladder involvement? ...

crista1

•10 years ago

7 Replies

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On Coumadin-forgot my Vitamin K food yesterday--Can I eat more today??

Yikes, for the first time I totally did not eat anything with Vitamin K yesterday except for grapes. Should eat more than usual today or just go back on track...

Yikes, for the first time I totally did not eat anything with Vitamin K yesterda...

loretta1106

•10 years ago

11 Replies

OHSU Update

Hello again to everyone, The specialist from the Portland OHSU called me with the new results of the blood draws that they did a week ago Tuesday. I'm beside...

Hello again to everyone, The specialist from the Portland OHSU called me with th...

beccafullcircle

•10 years ago

12 Replies

Hi

INGLÉS someone suffered from interstitial cystitis? mee say is common in autoimmune diseases

INGLÉS someone suffered from interstitial cystitis? mee say is common in autoimm...

Claudia65

•10 years ago

9 Replies

Hello I shall be on here some of the time but with a few gaps!

Hi everybody, I shall be on here over the next two weeks probably here and there, probably when resting. I am in the middle of moving house and at the same...

Hi everybody, I shall be on here over the next two weeks probably here and there...

MaryF

Administrator•10 years ago

20 Replies

Timelines

Just wondering what everyone else's experiences have been with treatment and symptoms response. Mostly I'm interesting in cognitive symptoms (dizziness, brain...

Just wondering what everyone else's experiences have been with treatment and sym...

ehc918

•10 years ago

4 Replies

need help

looking for answers my fiancee has lyme which we believe is caused lupus anti coagulant in blood he has had a stroke and heart attack is on blood thinner 2...

looking for answers my fiancee has lyme which we believe is caused lupus anti co...

dar7

•10 years ago

13 Replies

chest infection

I have had a chest infection, coughing up phlegm, for 8 months. I have had two chest X-rays, numerous phelgm samples taken, all showing nothing. I have been...

I have had a chest infection, coughing up phlegm, for 8 months. I have had two ...

medmurph

•10 years ago

11 Replies

Severe fatigue and loss of appetite

Hi I have recently been experiencing severe fatigue accompanied by lack of appetite and nausea. I have no energy or motivation whats so ever the smallest of...

Hi I have recently been experiencing severe fatigue accompanied by lack of appet...

sarahlou1801

•10 years ago

5 Replies

So often THYROID tests do not show up the full clinical picture

Hi, I know I bang on about Thyroid issues, but they are prevalent with Hughes Syndrome/APS. Here is an article from the Daily Mail, relevant to us as readers...

Hi, I know I bang on about Thyroid issues, but they are prevalent with Hughes Sy...

MaryF

Administrator•10 years ago

2 Replies

Only aspirin, what is your advice ?

In 6 week I came back positive for Lupus anticoagulant wit 52 seconds ( max 42 seconds ). All other results were normal, my platelet count was in "normal...

In 6 week I came back positive for Lupus anticoagulant wit 52 seconds ( max 42...

Glassart

•10 years ago

9 Replies

Travel Insurance

Hi, can anyone advise about travel insurers, I have been refused by 13 companies. Also does anyone have any information or reference for Avascualr Necrosis...

Hi, can anyone advise about travel insurers, I have been refused by 13 companies...

Lesley_D

•10 years ago

6 Replies

London Bridge visit with Prof K

I have to say firstly how lovely Professor Khasmata was when I visited on the 21st. He automatically put me at my ease. He straight away told me I had APS...

I have to say firstly how lovely Professor Khasmata was when I visited on the 21...

crista1

•10 years ago

14 Replies

What is the right range of INR for Hughes

I have been reading on here that so,e doctors recommend an INR between 3-3.5. Where can I get info to show my doctor.

I have been reading on here that so,e doctors recommend an INR between 3-3.5. Wh...

PGNYC

•10 years ago

6 Replies

Doctor visit in Portland OHSU

Good morning to everyone, Today I am returned home from our appointment with the blood specialist in OHSU in Portland. The visit was clear cut and fast. Not...

Good morning to everyone, Today I am returned home from our appointment with the...

beccafullcircle

•10 years ago

3 Replies

Succesful pregnancy with lupus anticoagulant

Hi all of you... I am so woried. Iam 13 week pregnant after my daughter Joana was stilborn in January this year , the reason unknown. The doctors said if...

Hi all of you... I am so woried. Iam 13 week pregnant after my daughter Joan...

Glassart

•10 years ago

18 Replies

Nose bleed on warfarin

Hi all I'm on warfarin for 3 years and my inr has never been stable. Yesterday I had a nose bleed, my head was hurting and I fell asleep for a couple of hours....

Hi all I'm on warfarin for 3 years and my inr has never been stable. Yesterday I...

monsoon17

•10 years ago

21 Replies

Update

Just to say I saw Professor Khamashta on Thursday at London Bridge Hospital. Fab man (If I had wanted to see Prof Hughes - the waiting list was 'til February...

Just to say I saw Professor Khamashta on Thursday at London Bridge Hospital. Fab...

chrissybell

•10 years ago

9 Replies

Fluctuating IGM levels and visual disturbances

Hi. This is my first time posting on the forum. I was diagnosed with primary APS about 8 years ago. I have been taking 75 mg aspirin daily. I had a recent igm...

Hi. This is my first time posting on the forum. I was diagnosed with primary APS...

Hidden

•10 years ago

8 Replies

What?

Hi my name is Lee, I was diagnosed with APS 2 years ago after having a stroke when I was 35. Since then it's been a total rollacoster, I have been admitted to...

Hi my name is Lee, I was diagnosed with APS 2 years ago after having a stroke wh...

Lmb28

•10 years ago

11 Replies

Anyone here familar with rapamycin

My doctors are planning to subscribe rapamycin also known as Sirolimus. Mainly because it seems to give good results with aPL antibodies. Is the use of this...

My doctors are planning to subscribe rapamycin also known as Sirolimus. Mainly b...

sander

•10 years ago

6 Replies

Some advice for a newbie please?

Hi, I'm a noob and not very up to speed with Hughes so please bear with me! I had a DVT in my right leg in 2004; this was put down to lots of long haul...

Hi, I'm a noob and not very up to speed with Hughes so please bear with me! I...

Mishka

•10 years ago

12 Replies

I am 70 years old and have APS. Is there anyone else older than me on this site that has got APS?

I would be so interested to know. Perhaps you have a relative with APS older than 70. Kerstin

I would be so interested to know. Perhaps you have a relative with APS older tha...

Lure2

•10 years ago

25 Replies

APS & Recurrent Miscarriage

After a great many years of trying to conceive, I am 16 weeks pregnant. God willing, a sucessful birth. I have had 10 miscarriages, one live birth (my son of...

After a great many years of trying to conceive, I am 16 weeks pregnant. God will...

MelissaHedden

•10 years ago

13 Replies

Hi all, I've not been on the site for quite a while due to many problems..

I had a bone density scan a few months ago and will need to take yet another medication (Bisphosphonate). Are there any members out there taking this...

I had a bone density scan a few months ago and will need to take yet another med...

popshaw21

•10 years ago

2 Replies

Gluten free foods...anyone experienced feeling better on a gluten free diet?

We've recently tried baking etc with gluten free flours and after hearing stories from some patients with SLE and Hughes Syndrome (like myself), I was...

We've recently tried baking etc with gluten free flours and after hearing storie...

Rockhopper

•10 years ago

10 Replies

New here, have "mild" APS?

Hello. I'm not sure if this is the right place for me. I have been dealing with chronic fatigue issues since 2006. Fatigue, brain fog, muscle and joint pain,...

Hello. I'm not sure if this is the right place for me. I have been dealing with ...

ehc918

•10 years ago

40 Replies

Safe arrival of our daughter.

I just wanted to post and let you all know that our daughter arrived safely on 17th July weighing 6lbs 5oz and she is absolutely perfect. Thank you all for...

I just wanted to post and let you all know that our daughter arrived safely on 1...

starships

•10 years ago

17 Replies

Posts - Hughes Syndrome APS Forum | HealthUnlocked

Hughes Syndrome APS Forum

All posts for August 2014

Gamma GT question?

Got PIP award!

APS/Kidney/Bladder involvement

On Coumadin-forgot my Vitamin K food yesterday--Can I eat more today??

OHSU Update

Hi

Hello I shall be on here some of the time but with a few gaps!

Timelines

need help

chest infection

Severe fatigue and loss of appetite

So often THYROID tests do not show up the full clinical picture

Only aspirin, what is your advice ?

Travel Insurance

London Bridge visit with Prof K

What is the right range of INR for Hughes

Doctor visit in Portland OHSU

Succesful pregnancy with lupus anticoagulant

Nose bleed on warfarin

Update

Fluctuating IGM levels and visual disturbances

What?

Anyone here familar with rapamycin

Some advice for a newbie please?

I am 70 years old and have APS. Is there anyone else older than me on this site that has got APS?

APS & Recurrent Miscarriage

Hi all, I've not been on the site for quite a while due to many problems..

Gluten free foods...anyone experienced feeling better on a gluten free diet?

New here, have "mild" APS?

Safe arrival of our daughter.

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