Posts - Hughes Syndrome APS Forum | HealthUnlocked

Hughes Syndrome APS Forum

10,354 members • 10,542 posts

All posts for March 2014

AGAIN, via Hughes Syndrome Foundation/prescription charge rises in the UK - petition below

Prescription charges go up tomorrow and patients will pay a heavy price. 12,000 people have signed our petition to end unfair prescription charges, please add...

Prescription charges go up tomorrow and patients will pay a heavy price. 12,000 ...

MaryF

Administrator•10 years ago

2 Replies

A thousand questions

Hi - sorry if this rambles on - have a thousand questions regarding possible Hughes Syndrome in my daughter. She was recently tested for Lupus - had miriad of...

Hi - sorry if this rambles on - have a thousand questions regarding possible Hug...

floss112

•10 years ago

11 Replies

Been on Warfrin for 5 months, my levels are rollercoaster. I been running a 1.0-5.4 and when went to the Dr. today it was 14.8. Why?

napro2005

•10 years ago

6 Replies

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

Very silently and quickly NHS Direct has been closed down, ahead of schedule

So if in the UK, this service which some of us may have used is no longer viable: http://www.nhsdirect.nhs.uk/ We knew it was coming.... and head of...

So if in the UK, this service which some of us may have used is no longer viable...

MaryF

Administrator•10 years ago

9 Replies

High Kaolin Clotting Time and RVV

Hi, I have a 16-year-old daughter who is having all sorts of tests to try to figure out which autoimmune disease she is heading towards. Blood tests are...

Hi, I have a 16-year-old daughter who is having all sorts of tests to try to fig...

IHPA

•10 years ago

9 Replies

Diet ...which is best??

Im sure this has been asked over and over again,and i have took heed and reduced my gluten wherever possible but here is my problem, i think im just thinking...

Im sure this has been asked over and over again,and i have took heed and reduced...

emmaj

•10 years ago

10 Replies

Going through (another) bad patch

A month ago my hemotologist talked to me about the risks of warfarin - I do not have an identifiable clotting episode. During the consultation I began to feel...

A month ago my hemotologist talked to me about the risks of warfarin - I do not ...

stillwaiting

•10 years ago

15 Replies

Lupus and aps

Well I went to see the rubbish haemotologist last week as I had an appointment and needed treatment for the joint pain I'm getting (the good haemotologist...

Well I went to see the rubbish haemotologist last week as I had an appointment a...

bevjane74

•10 years ago

5 Replies

Has anyone else had kidney failure as a result of Hughes (APS) and Lupus anticoagulant?

booster1

•10 years ago

7 Replies

HSF Charity bike rides update

Hello everyone, Just thought I would let you know how the hubby is getting on with his fund raising for HSF. Ryan completed his 1st 100 mile + bike ride on...

Hello everyone, Just thought I would let you know how the hubby is getting on w...

kateb81

•10 years ago

4 Replies

I have noticed people talking about cutting gluten from their diet to help prevent inflammation. I bake my own bread can anyone tell me if

This contains as much gluten as shop bought and if it is better .

clova

•10 years ago

3 Replies

Here in Cleveland clinic

Hello everyone. I am again in a hospital, #6 in a month and a half. This time we drove 4 hours to get me seen. I have given them my medical records with my...

Hello everyone. I am again in a hospital, #6 in a month and a half. This time ...

armywyfRN

•10 years ago

5 Replies

Has anyone tested positive for APS years after a DVT? I have had tests done for the last 5 years and just recently show a positive for

Lupus Anticoagulant. I have heard others say they have gone from positive to negative. Just wondering.

Lupus Anticoagulant. I have heard others say they have gone from positive to neg...

Rufusandfrankie

•10 years ago

2 Replies

Sound familiar to anyone???

4 miscarriages, 1 prem baby 32 weeks, 4 dvts, positive blood tests for lupus anticoagulant and aps in past although also had negative tests since. Always...

4 miscarriages, 1 prem baby 32 weeks, 4 dvts, positive blood tests for lupus an...

fizzymoon

•10 years ago

12 Replies

I tested positive APS back in 2003. I had gone to the DR because of Visual migraines. Anyone else have these? No pain just weird vision

They usually last about a half hour and I can feel them coming on. Aspirin clears them and prevents them. I have since lost the upper vision in my left...

They usually last about a half hour and I can feel them coming on. Aspirin clea...

bluemax01

•10 years ago

9 Replies

Can you vote for Hughes Syndrome Foundation and also share with friends, relatives and work colleagues?.

This was in 39th Place, now up to number 15. I know I have bombarded some people with this, but not a bad idea to try and win £2,000:...

This was in 39th Place, now up to number 15. I know I have bombarded some peop...

MaryF

Administrator•10 years ago

9 Replies

Decadron as treatment?

I was wondering if anyone had received decadron or any other steroid to aid in relieving a flare up? If so was it IV? How long did it last? Thanks in advance.

I was wondering if anyone had received decadron or any other steroid to aid in r...

armywyfRN

•10 years ago

1 Reply

Has anyone been diagnosed with Alveolitis (Farmers Lung/Bird Fanciers Disease).

I have APS and on Clopidogrel but in the last six weeks following various CT scan, xrays, and lung functions I have been diagnosed with Alveolitis. Commonly...

I have APS and on Clopidogrel but in the last six weeks following various CT sc...

Mollie01

•10 years ago

14 Replies

Has anyone heard from our " TASCH "????????????????????

jetjetjet

•10 years ago

7 Replies

Frustrated...again

Hello everyone. I just need to vent my frustration. After an aggravating 5 weeks of illness, weakness, a TIA, aphasia, loss of appetite, neuralgia,...

Hello everyone. I just need to vent my frustration. After an aggravating 5 wee...

armywyfRN

•10 years ago

20 Replies

I have a sharp pain in my head

I keep getting sharp pains in my head but they last for a second but make me cringe up and hurt so badly ! It feels like a knife has stabbed me in the head....

I keep getting sharp pains in my head but they last for a second but make me cri...

LMoore10

•10 years ago

9 Replies

Anybody with SLE and APS find a lupus flare causes a drop in their INR?

Still awaiting medication for SLE but am at the start of a flare. Blood test yesterday saw my INR drop to 1.7 (range 2.5 - 3). I was just wondering if these...

Still awaiting medication for SLE but am at the start of a flare. Blood test yes...

Bonnie39

•10 years ago

3 Replies

Has anyone been able to take Coumadin but not Warfin ?

I take a Warfin & I swell up like an elephant-everywhere, I have a migrane, and feel sick. I have read that they use different filler & dyes that can cause...

I take a Warfin & I swell up like an elephant-everywhere, I have a migrane, and...

designer16

•10 years ago

4 Replies

What can I do to relieve very heavy periods and possibly improve pre menstrual symptoms?

Further to the recent question regarding pre menstrual exacerbation of symptoms, I have a related one. Since starting warfarin my pre menstrual symptoms...

Further to the recent question regarding pre menstrual exacerbation of symptoms,...

MrsMouseSJ

•10 years ago

12 Replies

I have been having the worst pain in my should blade and neck, it's been 7 months now... I've tried yoga, acupuncture, chiro, nothing helps.

It keeps me up all night (can only sleep 2 hours at a time) and wake up from the pain... I have a 7 month old baby which doesn't help my situation at all......

It keeps me up all night (can only sleep 2 hours at a time) and wake up from the...

Pollyn

•10 years ago

9 Replies

Help....

Please help, my mum was incorrectly diagnosed with MS 13 years ago and it actually turned out to be Hughes, which took a lot of convincing to irish doctors...

Please help, my mum was incorrectly diagnosed with MS 13 years ago and it actual...

Amanda1982

•10 years ago

6 Replies

Igg testing ---food allergies. Does anyone know about this. Is there different Igg antibodies? I searched but was unable to find that info.

I saw a Allergist yesterday. Unbelievable, the only dr. I found in the United States to try to help me. She listened to everything I had to say and she...

I saw a Allergist yesterday. Unbelievable, the only dr. I found in the United St...

designer16

•10 years ago

4 Replies

have been thinking about trying gluten free, but it does seem daunting. I often resort to a takeaway being delivered. Any tips for beginners

donnabrain

•10 years ago

27 Replies

Hs sufferer getting pain in heart/chest area - is this normal? Get cold nose, weight gain, dizzy, eye dizzy - is this all normal?

Not sure what is normal - diagnosed 6 months ago and had no info?????

Kirafluffy

•10 years ago

4 Replies

Sixth cranial nerve palsy

Hi all Been a while since I have been well enough to come online but I am back So lately I have had yet another bout of sepsis and intensive care that's...

Hi all Been a while since I have been well enough to come online but I am back...

Dann

•10 years ago

2 Replies

Posts - Hughes Syndrome APS Forum | HealthUnlocked

Hughes Syndrome APS Forum

All posts for March 2014

AGAIN, via Hughes Syndrome Foundation/prescription charge rises in the UK - petition below

A thousand questions

Been on Warfrin for 5 months, my levels are rollercoaster. I been running a 1.0-5.4 and when went to the Dr. today it was 14.8. Why?

Very silently and quickly NHS Direct has been closed down, ahead of schedule

High Kaolin Clotting Time and RVV

Diet ...which is best??

Going through (another) bad patch

Lupus and aps

Has anyone else had kidney failure as a result of Hughes (APS) and Lupus anticoagulant?

HSF Charity bike rides update

I have noticed people talking about cutting gluten from their diet to help prevent inflammation. I bake my own bread can anyone tell me if

Here in Cleveland clinic

Has anyone tested positive for APS years after a DVT? I have had tests done for the last 5 years and just recently show a positive for

Sound familiar to anyone???

I tested positive APS back in 2003. I had gone to the DR because of Visual migraines. Anyone else have these? No pain just weird vision

Can you vote for Hughes Syndrome Foundation and also share with friends, relatives and work colleagues?.

Decadron as treatment?

Has anyone been diagnosed with Alveolitis (Farmers Lung/Bird Fanciers Disease).

Has anyone heard from our " TASCH "????????????????????

Frustrated...again

I have a sharp pain in my head

Anybody with SLE and APS find a lupus flare causes a drop in their INR?

Has anyone been able to take Coumadin but not Warfin ?

What can I do to relieve very heavy periods and possibly improve pre menstrual symptoms?

I have been having the worst pain in my should blade and neck, it's been 7 months now... I've tried yoga, acupuncture, chiro, nothing helps.

Help....

Igg testing ---food allergies. Does anyone know about this. Is there different Igg antibodies? I searched but was unable to find that info.

have been thinking about trying gluten free, but it does seem daunting. I often resort to a takeaway being delivered. Any tips for beginners

Hs sufferer getting pain in heart/chest area - is this normal? Get cold nose, weight gain, dizzy, eye dizzy - is this all normal?

Sixth cranial nerve palsy

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