New to Hughes syndrome

[Moonbug]

Hi I have been diagnosed with aps I have 3 people in my family who also have it .my question is I have had all the tests and my only positive result is my drvvt test which is usually 2.5 to 3 or now does this mean I only have it mildly or can my results fluctuate and also is a baby aspirin sufficient enough to keep this under control.thanks for any replies in advance. Thanks h .

[MaryF Administrator]

A big welcome to you, glad you have found us - and lots of people will come on here and help you decipher your IRN results, and also give you some more detailed ideas about Hughes Syndrome. Please do look at the site for Hughes Syndrome Foundation as a lot of useful information is contained on there, and also reading through people's blogs. At times you will come across a person or two which rings a bell with you, with a similar history, so reading those blogs can be informative as well. Best Wishes. Mary F

[Manofmendip]

Hello Moonbug

Like MaryF I welcome you to our community too.

I'm not familiar with the drvvt test.

Some people with APS are fine on baby aspirin but many need to take warfarin too, if they have bad symptoms.

Who diagnosed you? So often people struggle to get a diagnosis. It important to find a good Dr who knows about APS and is not affraid to try you on warfarin, perhaps after a trial of heparin, if junior aspirin doesn't keep you well.

I have seen Professor Hughes, privately, at the London Lupus Centre, several times and he is very good.

Very best wishes.

Dave

[Moonbug]

Hi thank you Maryf and dave for your replys . I to went to the lupus centre which was because they actually thought I had lupus but luckily that's not the case it turned out to be aps . I saw a doctor there called dr Edwards not sure if you have heard of him? Would you recommend a consultation with dr Hughes? The other question I have is does everybody that has aps end up getting a clot? The drvvt test is vipor venom one . my inr is pretty much always 2.5 and doc says this is fine and all other tests come back negative. Many thanks h .

[paddyandlin]

Hi Moonbug,

welcome to the group,

Firstly on the asprin question this is given to those that have not had a clotting event, those that have had a clotting event is normally moved to either Warferin where you have to check your INR (How thin the blood is ) or Clexaine as after a clotting event you are deamed more at risk after one incedent.

Regarding your second point normally APS /Hughes is diagnosed by either two seperate posative blood tests – anticardiolipin antibodies and the confusingly named lupus anticoagulantin but some people are negative in that case you are diagnosed by family and your medical history.

Regarding see another Dr St Thomas Lupus centere is the national place for this illness under the NHS if you want to have a second opinion you can get a priivate appointment with Prof Hughes at the London Bridge Clinic and as for INR prof Hughes recommends a INR of 3.5 as the best result for APS patients

APS can flare up but again this will do to how much damage a clot has done and also what your INR is.

i hope this makes sense

Paddy

[paddyandlin]

you can also find a lot of info on

hughes-syndrome.org/index.htm

Paddy

[Moonbug]

Hi paddyandlin thank you for your reply and yes it makes sense.it the lupus anticoagulant test I always test positive for and apparently only mildly most of the time it's positive but my last one was negative. My reumy told me because I only have the one mild positive it's unlikely it would become any stronger result and there for in his experience would properly say I will prob be safe taking aspirin 75mg and not experience any clotting does this sound right or am I getting a little fobbed off . Sorry for so many questions just need things straight in my head. Many thanks h.

[paddyandlin in reply to Moonbug]

Moon,

if you have not had a clotting event aspirin is the common blood thinner given , if you get any symptoms then go see your doc.

Paddy

[jessielou]

Hi moonbug

welcome n glad you found us.

I too have lupus anticoagulant positive Aps and have had clots, miscarriages etc. Thats not to say you would too, we all different, may be a good idea to get checked out further, so you feel safe and hopefully better through treatment.

My first Rheumy didn't have a clue and one of her nurses hadn't heard of Aps. So some are not that knowledgable on this.

Take care gentle hugs love sheena xxxxxxxxxx

[norris]

Hello Moonbug,

I was positive aps and then negative, but my history is so strong that the Dr's have gone with the diagnosis of aps. I am now on low dose aspirin, this incident has given me clots in my eye therefore losing some vision but that is going to be dealt with an ozurdex implant. They won't put me on warfarin because when I have the op I may bleed. I am happy to not to be on warfarin because it is such a life long commitment. I have had aps for 50 years with many incidents, when I

Best was younger I would always take aspirin, aspro or Beechams powders, now its paracetamol. As I have survived so long I am happy to continue on the aspirin. I also drink a glass of fruitflow a day, which contains a natural anticoagulant.

I did find the Dr's were ignorant of Hughes, but the surgeon who took a biopsy, had studied it when a student, he was the first to mention sticky blood, The others seemed to gain knowledge very quickly. The eye surgeon was also very genned up and he knew that it was hughes causing my eye problem not temporal artritis as the others thought, although I do have temporal artritis as well. Best Wishes Norris

[Moonbug]

Thank you jessielou and Norris for your reply everyone who has replied has given me insight to things . I was also wondering have you all known each time you have had a clot I'm scared that I'll miss it and it will be to late . Many thanks h .