Posts - Hughes Syndrome APS Forum | HealthUnlocked

Hughes Syndrome APS Forum

10,443 members•10,641 posts

All posts for August 2013

A baby step forward?

I saw the orthopedic surgeon at Duke and he outlined the first steps in the hip replacement plan. Step one is to consult with a Duke based hematologist who...

I saw the orthopedic surgeon at Duke and he outlined the first steps in the hip ...

GinaD

•11 years ago

4 Replies

Fed up

Seriously fed up today. Went away to the seaside for a couple of days and ended up first of all at the opticians then the eye hospital with suspected tear in...

Seriously fed up today. Went away to the seaside for a couple of days and ended...

panda60

•11 years ago

11 Replies

Tell your story and help others to understand what being on warfarin is really like

If you are one of the 1.2 million people across the UK taking warfarin on a long-term basis? How easy are you finding it to keep tabs on your dosage and your...

If you are one of the 1.2 million people across the UK taking warfarin on a long...

warfarin1

•11 years ago

10 Replies

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Young people and unstable INR

Hi everyone! I'm new to this site, I'm 21 but was first diagnosed in 2007 when I was 16 with multiple DVTs and a PE. I have yet to find anyone around my age...

Hi everyone! I'm new to this site, I'm 21 but was first diagnosed in 2007 when I...

lemroc

•11 years ago

7 Replies

Tests back negative.

Hi, so all the tests came back negative. I am really happy about that but have a few niggling worries. The consultant said that "he didn't believe in the...

Hi, so all the tests came back negative. I am really happy about that but have a...

vine55

•11 years ago

12 Replies

Question regarding this site

I know it may be impossible but is there a way this site can display which recent posts and questions have received a response? Like Facebook where you have...

I know it may be impossible but is there a way this site can display which recen...

Jade

•11 years ago

12 Replies

Does anyone with APS (Hughes Syndrome) have any suggestions for improving memory or concentration?

This past year or so I've noticed that my memory and my concentration have just completely gone to pot. I recently started a new job that was very complicated...

This past year or so I've noticed that my memory and my concentration have just ...

Tomcat

•11 years ago

21 Replies

one for the ladies mentral bleeding

hi this is rather horrid and embarrasing but i have aps and my periods are becoming unbareable im passing etremly large clots one after the other i recently...

hi this is rather horrid and embarrasing but i have aps and my periods are becom...

kezebabe

•11 years ago

12 Replies

A new recommended INR?

After my husband was diagnosed with APS, I found the old APS/HUGHES website, read about recommended INR levels based on Professor Hughes research & I was...

After my husband was diagnosed with APS, I found the old APS/HUGHES website, rea...

sbncmo

•11 years ago

20 Replies

Lopsided face.

I notice sometimes that it looks as though one cheek looks slightly more swollen than the other which makes me look lopsided. It affects both sides. Asked...

I notice sometimes that it looks as though one cheek looks slightly more swolle...

panda60

•11 years ago

3 Replies

Okay, this is a funny question I know. Has anyone else's hair changed?!

Odd question I know, but was wondering if changes to hair is a known Hughes symptom. My hair falls out really easily, used to be very thick straight hair and...

Odd question I know, but was wondering if changes to hair is a known Hughes symp...

Frhd

•11 years ago

9 Replies

Is Co Enzyme Q10 safe with warfarin

I am on a lot of other meds but its the possible interactions with warfarin that most concerns me. Its something I am considering trying after days of severe...

I am on a lot of other meds but its the possible interactions with warfarin that...

overnighthearingloss

•11 years ago

3 Replies

Any thoughts on a non-specific chest pain (not stabbing but dull, persistent for days) and you can't attribute to heart or lung issue?

Confirmed APS ten years ago. I believe they are suspecting Lupus but still testing. ER found nothing heart or lung related via xray or vitals.

Confirmed APS ten years ago. I believe they are suspecting Lupus but still testi...

Want2BNormal

•11 years ago

8 Replies

Do you follow a regular exercise programme?

I have tons of weight to lose. I am feeling pretty low. I thought some exercise might be a good thing for both weight and mood. My drs seem ok with this. But I...

I have tons of weight to lose. I am feeling pretty low. I thought some exercise ...

stillwaiting

•11 years ago

10 Replies

Is disabling fatigue, which can be worst 2/3 days after any overexertion and can take over a week to resolve, a common feature of Hughes?

I am newly diagnosed with Hughes, secondary to what is now being called atypical Lupus (previously thought to be ME/CFS), and possibly also POTS - and am...

I am newly diagnosed with Hughes, secondary to what is now being called atypical...

MrsMouseSJ

•11 years ago

9 Replies

Off to Duke tomorrow

. . . to see my rheumatologist and an orthopedic surgeon. After 10+ years of kicking the can down the road I concede its time for the hip replacement. I'm...

. . . to see my rheumatologist and an orthopedic surgeon. After 10+ years of ki...

GinaD

•11 years ago

4 Replies

I started Simvastatin one month ago and have reacted positive to the cholesterollevels of LDL but have musclepain. I am not sure it is the

statin. The doctors seem to think it is a treatment of APS/Lupus. I also have warfarin. What is your opinion to this new drug? Thank you! Kerstin

statin. The doctors seem to think it is a treatment of APS/Lupus. I also have wa...

Lure2

•11 years ago

15 Replies

Warfarin resistance ?

Hello everyone, I've been on warfarin ever since my dignosis in 1999 but have recently had a baby so was on clexane jabs. I've been back on warfarin since may...

Hello everyone, I've been on warfarin ever since my dignosis in 1999 but have re...

kateb81

•11 years ago

3 Replies

Study on Autism and Autoimmune Disease

Article found on Thyroid Change: http://sfari.org/news-and-opinion/news/2013/large-study-links-autism-to-autoimmune-disease-in-mothers Mary F x

Article found on Thyroid Change: http://sfari.org/news-and-opinion/news/2013/l...

MaryF

Administrator•11 years ago

8 Replies

Graham Hughes' July blog 2013

Another British weather record. "The sixth hottest July since records began in 1659"! Wonderful. A month of unbroken sunshine. London is packed with tourists....

Another British weather record. "The sixth hottest July since records began in 1...

Hidden

•11 years ago

18 Replies

Hi, I have lupus and APS. Had my INR done and its low which means I get a stutter and shattered anyone got any low inr tips?

ricky_chotai

•11 years ago

7 Replies

Hey guys, I have received a question in my aps web site and I do not know the answer. "What teas may we drink? I know green tea is fordiden

BrazilianBade

•11 years ago

5 Replies

Back to Lebanon

Well all back to Lebanon -gastroenterologist-- for fatty liver ,been 7 months now will see if all this exercising { FLIPPER } walking --trainer--didany good...

Well all back to Lebanon -gastroenterologist-- for fatty liver ,been 7 months no...

jetjetjet

•11 years ago

5 Replies

Does anyone suffer from dupetren tendons in the hands and fingers???

I have awful dupetrens in my hands and fingers this started a couple of years ago after I was diagnosed as it is autoimmune and generally in men I would be...

I have awful dupetrens in my hands and fingers this started a couple of years ag...

traceylou

•11 years ago

6 Replies

Has anyone had there humaglobin go from 121 to 79 in the matter of days, without internal bleeding, or blood clott?

Had ct, and exray, no show of clott, or internal bleeding? Doctors have done blood tests an can not find out why the sudden drop in humaglobin?

Had ct, and exray, no show of clott, or internal bleeding? Doctors have done blo...

Skyllark

•11 years ago

1 Reply

Hi guys I live near Swansea South Wales U.K I am looking for a specialist on Hughes Lupus /Sjogrens in my area or a blood specialist

As I am to ill to travel long distance thanks

taffydaffy

•11 years ago

6 Replies

hi is it possible to print these pages and has anyone got any good tips when appealing for DLA ty jean

mcbeth

•11 years ago

3 Replies

Drug Recall Class 3. Is this just at pharmacy level? Warfarin 3mg.

http://www.mhra.gov.uk/Publications/Safetywarnings/DrugAlerts/CON300315 Does a class 3 recall just relate to pharmacy stocks?

http://www.mhra.gov.uk/Publications/Safetywarnings/DrugAlerts/CON300315 Does a ...

overnighthearingloss

•11 years ago

1 Reply

how do you define low grade fever?

Kimu

•11 years ago

2 Replies

Do you think Prof K would be able to reply if I emailed him?

I saw Prof K privately at London Bridge then on the nhs at St Thomas. I'm not seeing him again till November. I've got a couple of questions about my care...

I saw Prof K privately at London Bridge then on the nhs at St Thomas. I'm not se...

Paleosooze

•11 years ago

4 Replies

Posts - Hughes Syndrome APS Forum | HealthUnlocked

Hughes Syndrome APS Forum

All posts for August 2013

A baby step forward?

Fed up

Tell your story and help others to understand what being on warfarin is really like

Young people and unstable INR

Tests back negative.

Question regarding this site

Does anyone with APS (Hughes Syndrome) have any suggestions for improving memory or concentration?

one for the ladies mentral bleeding

A new recommended INR?

Lopsided face.

Okay, this is a funny question I know. Has anyone else's hair changed?!

Is Co Enzyme Q10 safe with warfarin

Any thoughts on a non-specific chest pain (not stabbing but dull, persistent for days) and you can't attribute to heart or lung issue?

Do you follow a regular exercise programme?

Is disabling fatigue, which can be worst 2/3 days after any overexertion and can take over a week to resolve, a common feature of Hughes?

Off to Duke tomorrow

I started Simvastatin one month ago and have reacted positive to the cholesterollevels of LDL but have musclepain. I am not sure it is the

Warfarin resistance ?

Study on Autism and Autoimmune Disease

Graham Hughes' July blog 2013

Hi, I have lupus and APS. Had my INR done and its low which means I get a stutter and shattered anyone got any low inr tips?

Hey guys, I have received a question in my aps web site and I do not know the answer. "What teas may we drink? I know green tea is fordiden

Back to Lebanon

Does anyone suffer from dupetren tendons in the hands and fingers???

Has anyone had there humaglobin go from 121 to 79 in the matter of days, without internal bleeding, or blood clott?

Hi guys I live near Swansea South Wales U.K I am looking for a specialist on Hughes Lupus /Sjogrens in my area or a blood specialist

hi is it possible to print these pages and has anyone got any good tips when appealing for DLA ty jean

Drug Recall Class 3. Is this just at pharmacy level? Warfarin 3mg.

how do you define low grade fever?

Do you think Prof K would be able to reply if I emailed him?

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