Posts - Hughes Syndrome APS Forum | HealthUnlocked

Hughes Syndrome APS Forum

10,354 members • 10,542 posts

All posts for September 2013

Porphyria?? I have APS and now have been diagnosed with Porphyria.

Anyone else have porphyria?

Ilovemyfamily

•11 years ago

4 Replies

What painkillers to take with warfarin

OK so I've been on warfarin for 9 years and during that time taken loads of ibuprofen and luckily suffered no ill effects but I know I have been playing with...

OK so I've been on warfarin for 9 years and during that time taken loads of ibup...

Jade

•11 years ago

20 Replies

Does anyone else experience bloating after eating/drinking even small amounts?

Just wondering if this is a symptom of Hughes. Meds for IBS both in the past and now do nothing to ease the problem and it can be very uncomfortable. Does this...

Just wondering if this is a symptom of Hughes. Meds for IBS both in the past and...

Squeezer

•11 years ago

8 Replies

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

Short article off The Daily Mail

http://www.dailymail.co.uk/health/article-2430775/Doctors-vacuum-2-FOOT-blood-clot-patients-heart-Live-saving-procedure-new-alternative-open-heart-surgery.html...

http://www.dailymail.co.uk/health/article-2430775/Doctors-vacuum-2-FOOT-blood-cl...

MaryF

Administrator•11 years ago

2 Replies

Period problems

After several eptopic pregnancies, i dont know whats normal now. I am bleading heavily from small problems (mosquito bites)- scratches take more than 5 hours...

After several eptopic pregnancies, i dont know whats normal now. I am bleading ...

Hidden

•11 years ago

5 Replies

What food would you suggest to help thin blood

Please don't suggest see a doctor, that's not an option for me. I think my blood is thin right now. Small scratches take hours to stop bleeding. I don't...

Please don't suggest see a doctor, that's not an option for me. I think my blood...

Hidden

•11 years ago

4 Replies

Severe heamoltic anaemia .anyone had this ? Just in hospital with it after suspected mumps. Anyone with any experience ?

sangje

•11 years ago

5 Replies

Anyone else developed osteoporosis as a result of long term steroid use?

Hi All, I was diagnosed with SLE and APS in 1999 and have been taking Prednisolone along with a cocktail of other drugs, ever since. 4 weeks ago I was trying...

Hi All, I was diagnosed with SLE and APS in 1999 and have been taking Prednisolo...

Rockhopper

•11 years ago

8 Replies

newly diagnosed with 2 positive blood tests and previous stroke

hi all I have had a stroke 3 months ago and I have 2 positive blood tests for aps and I have been sent to a haemotoligist for a final diagnosis as my neuro...

hi all I have had a stroke 3 months ago and I have 2 positive blood tests for a...

colinh

•11 years ago

7 Replies

bruising / clotting

hya i have had aps for a few years now and today i staggred and went flying into the baby gate now i have a whackin bruise on my leg and its a big lump to...

hya i have had aps for a few years now and today i staggred and went flying into...

kezebabe

•11 years ago

6 Replies

At a loss what to do.....

Since the early 90s I've suffered various bouts of losing my speech, loss of balance, confusion and so on. In 2005 I had a real doozer where I was hospitalised...

Since the early 90s I've suffered various bouts of losing my speech, loss of bal...

Simon_james

•11 years ago

6 Replies

Has anyone developed an intolerance to warfarin?

When I say intolerance I mean after you have been taking it for some time.. if so.. what were the signs/symptoms of such... I used to be able to tolerate a...

When I say intolerance I mean after you have been taking it for some time.. if s...

AnnieAxVale

•11 years ago

4 Replies

How to transfer from one Consultant at St. Thos, to another within the Lupus unit.

Initially diagnosed with Hughes Syndrome at London Bridge 5 years ago, and started on Warfarin 3-4 range following a blood clot in my right eye. Because of...

Initially diagnosed with Hughes Syndrome at London Bridge 5 years ago, and start...

Zamalek

•11 years ago

6 Replies

How do I get an appointment with prof hughes?

I'm struggling with my gp, he said he would refer my only if The blood tests came back positive, he did two out if the three blood tests and they came back...

I'm struggling with my gp, he said he would refer my only if The blood tests cam...

Lolly83

•11 years ago

3 Replies

Costs of clexane/heparin

Just wondering what the costs are in various parts of the world for clexane/heparin? Here in Australia I'm paying just over $36 for 10 syringes of 80mg...

Just wondering what the costs are in various parts of the world for clexane/hepa...

tassie

•11 years ago

7 Replies

APS, Warfarin and BP alongside Addison's disease

As some of you know, Derek had CAPS last year and now has Adrenal Insufficiency. We have been tracking his BP for the last month to see if there is any...

As some of you know, Derek had CAPS last year and now has Adrenal Insufficiency....

Tiggercat

•11 years ago

6 Replies

Hair Loss

Hi, I'm on a roll tonight with my questions haha!! I have been having handfuls of hair loss recently and I have been very worried about it, I used to have...

Hi, I'm on a roll tonight with my questions haha!! I have been having handfuls ...

SammyJ

•11 years ago

6 Replies

Looking for a support group close to Solihull, West Midlands

Hi I have recently given up work due to my ill health and I am interested in meeting up with people who understand my health issues to chat, find out...

Hi I have recently given up work due to my ill health and I am interested in mee...

SammyJ

•11 years ago

7 Replies

am 54 had 12 PEs 25 yrs ago.past 2 years hav TIAs , mild stroke ,carotid surgery ,flares joint pain ++ANA and just had 2nd mild pos

Anticardiolipin - lupus anticoagulant is negative - waiting for follow up apt but does the sound like APS?- I am on cocktail of drugs inc aspirin, plaquenil...

Anticardiolipin - lupus anticoagulant is negative - waiting for follow up apt bu...

Murphy0866

•11 years ago

3 Replies

Hi is anyone on here on Rivaoxaban as I am due to start it next month as an alternative to Warfarin

I wondered if there were any side effects

AlisonT2

•11 years ago

11 Replies

Probable TIA's

Am I right that a TIA doesn't necessarily show up on an MRI? Following my afternoon in A&E I had an brain MRI and last Fri got results. The dr said that the...

Am I right that a TIA doesn't necessarily show up on an MRI? Following my after...

stillwaiting

•11 years ago

12 Replies

Does anyone take LDN(low dose naltrexone) and plaquenil?

It doesn't seem that they are incompatible together as the LDN supposedly increases endorphin levels and plaquenil,well,as I understand it the jury is still...

It doesn't seem that they are incompatible together as the LDN supposedly increa...

StevePT

•11 years ago

4 Replies

I have been undergoing tests for ms and they have been negative, but i have been having transient ischemic attacks and all the symptoms of

Ms as well as having 2 mildly positive blood tests for IgM cardiolipin, which when googled suggests aps, I also have a history of pulmonary embolism and have...

Ms as well as having 2 mildly positive blood tests for IgM cardiolipin, which wh...

Karrie62

•11 years ago

11 Replies

Bad cramp in joints when INR is too low?

Hi Everyone. Does anyone get very bad cramp in their joints when your INR is too low? I have an INR of 1.27 at the moment and am experiencing dreadful cramp...

Hi Everyone. Does anyone get very bad cramp in their joints when your INR is to...

InSpain

•11 years ago

7 Replies

Could you possibly help me with collecting Tesco School Vouchers?

Hi there, if you possibly can please consider collecting the soon to be available again, Tesco School Vouchers. I will be collecting for the local hospital,...

Hi there, if you possibly can please consider collecting the soon to be availabl...

MaryF

Administrator•11 years ago

2 Replies

Seronegative Hughes Syndrome - proposed book!

Dear all, I mentioned some time back, that I intended to pull together a book of case studies around the subject of Seronegative Hughes Syndrome. I had a lot...

Dear all, I mentioned some time back, that I intended to pull together a book of...

MaryF

Administrator•11 years ago

37 Replies

Again I am getting quick sharp stabbing pains to the left hand side if my brain! They only last seconds but very painful & worrying.

Lotadz123

•11 years ago

4 Replies

Neurologists at RD&E Wonford (Exeter)

Anyone go to this hospital for neurology and if so what are their experiences of neurologists please..

Anyone go to this hospital for neurology and if so what are their experiences of...

AnnieAxVale

•11 years ago

9 Replies

CBT

panda60

•11 years ago

4 Replies

Warfarin withdrawal, now I am worried

I have just read that GP's are taking people off warfarin if they have not had a stroke, PE or DVT. It seems Kate has corroborated this. I am seronegative...

I have just read that GP's are taking people off warfarin if they have not had a...

Jade

•11 years ago

21 Replies

Posts - Hughes Syndrome APS Forum | HealthUnlocked

Hughes Syndrome APS Forum

All posts for September 2013

Porphyria?? I have APS and now have been diagnosed with Porphyria.

What painkillers to take with warfarin

Does anyone else experience bloating after eating/drinking even small amounts?

Short article off The Daily Mail

Period problems

What food would you suggest to help thin blood

Severe heamoltic anaemia .anyone had this ? Just in hospital with it after suspected mumps. Anyone with any experience ?

Anyone else developed osteoporosis as a result of long term steroid use?

newly diagnosed with 2 positive blood tests and previous stroke

bruising / clotting

At a loss what to do.....

Has anyone developed an intolerance to warfarin?

How to transfer from one Consultant at St. Thos, to another within the Lupus unit.

How do I get an appointment with prof hughes?

Costs of clexane/heparin

APS, Warfarin and BP alongside Addison's disease

Hair Loss

Looking for a support group close to Solihull, West Midlands

am 54 had 12 PEs 25 yrs ago.past 2 years hav TIAs , mild stroke ,carotid surgery ,flares joint pain ++ANA and just had 2nd mild pos

Hi is anyone on here on Rivaoxaban as I am due to start it next month as an alternative to Warfarin

Probable TIA's

Does anyone take LDN(low dose naltrexone) and plaquenil?

I have been undergoing tests for ms and they have been negative, but i have been having transient ischemic attacks and all the symptoms of

Bad cramp in joints when INR is too low?

Could you possibly help me with collecting Tesco School Vouchers?

Seronegative Hughes Syndrome - proposed book!

Again I am getting quick sharp stabbing pains to the left hand side if my brain! They only last seconds but very painful & worrying.

Neurologists at RD&E Wonford (Exeter)

CBT

Warfarin withdrawal, now I am worried

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