Hughes: the "gift" that just keeps on giving.

[stillwaiting]

hello

My test results from St T's came back today.

I am now testing positive to the antibeta2glycoprotein and the lupus anticoagulant. Formerly it was "just" the antibeta 2.

I am B12 deficient and will be on B12 injections for life. I was told the deficiency is auto immune based.

I am weakly positive (ANA) for lupus and hydroxichloriquine is recommended.

There is a chance I may "only" be APS positive during pregnancy so I may be able to come off warfarin and use just aspirin - though my local consultant & GP would prefer me to be on warfarin.

In the mean time - today I have had to have a d-dimer test for a suspected clot/dvt??? If I have a positive result then tomorrow I will be admitted to hospital.

Hughes may be attacking my kidneys as I have had several tests done which indicate blood & protein in my urine.

I am just numb with all of this.

St T's had discharged me but today, following the results, I was offered an annual review and they recommend that in the meantime I am seen by a local haemotologist, neurologist and rheumotologist.

My GP just said she can not believe how much I am going through and said she is there for me - so I guess I am lucky.

But I still feel numb but thankful that I am finally after 20 years being looked after.

Lynn.x.

[MaryF Administrator]

I think there is a lot here to thoroughly sort in detail, I am glad they have not completely let you go, and if your GP feels you need more supervision than a once a year appraisal at St Thomas' alongside any letter you may write tot hem also get your GP to write with some authority about your need to be in that clinic. St Thomas' is appearing to let people go rather swiftly currently. I hope your rheumatologist, the local one is clued up on Hughes Syndrome, and the others involved in your care, and perhaps now the information is more solid about yourself, there will be some more joined up thinking, including the fact that you may need more than just aspirin if you your current status is indicative of what is going on. Let us know how you get on with the latest problem being looked into. Mary F x

[stillwaiting]

Hi Mary just been told the d-dimer test is ok so no clot

Dr also suggested a blood test this week to check kidney function whilst we await other kidney tests to come back. B12 injections will start now as well.

Feeling very down today - tiredness probably.

Thanks for replying.

Lynn.x.

[MaryF Administrator in reply to stillwaiting]

Hang on in there, I am sure others will read your post and add in their opinion and help. I am sure APsnotFab will wish to reply to you at some point, you have a lot going on. I am sure things will perk up for you, especially with the B12 injections they do really help with fatigue and do please get you GP to test your Vit D levels and thyroid function regularly also, it is so very important to keep looking at the complete picture. If you have any suspicions whatsoever about your condition, come back to us, as at times Seronegative Hughes can be very sidelined by some of the less informed medical profession, which of course is very wrong and goes against what we have been taught and told. Mary F x

[stillwaiting]

Thanks Mary - I am not sero negative for Hughes - sorry if I came across as being so. I am positive for 2 of the antibodies but they say I may only have obstetric APS - so want me to come off warfarin.

I am weakly positive for lupus but they say I do have lupus like symptoms.

Thanks for always replying - you are a gem

Lynn.x.

[MaryF Administrator in reply to stillwaiting]

I realize you are not sero negative, but results can come and go... and cause mayhem at some appointments! I did not pass a test but had terrible clots in pregnancy and am an aspirin only lady, however I am aware that this could change at any time, if they do just decide on Aspirin, watch you symptoms carefully, and contact them straight away or your GP if things appear to you to worsen or not feel right over time. Mary F x

[stillwaiting in reply to MaryF]

I was on aspirin but still had stroke like symptoms ( like TIA's but one episode required 18 months of stroke rehab) -but there is no scan evidence of stroke.

I was amazed that this blood test was so different from my first.

When they mentioned coming off warfarin and going back to aspirin I did think of you.

How I wish this had been found years ago and I hadn't had the miscarriages.

lynn.x.

[MaryF Administrator in reply to stillwaiting]

Yes... an awful lot to reflect on. My daughter has had nasty TIA's which do not show up on a scan.. her paediatrician is very clued up on seronegative Hughes Syndrome and alongside her Plaquenil for her Lupus is on twice a day Aspirin! Mary F x

[TJSTICKYBLOOD]

Wishing you the best of luck in getting sorted, I know how difficult that can be but I got there in the end. It was my kidney function that set of the alerts in my case I was taken into hospital to discover I had clotted off a kidney. Then looking back over my other symptoms they diagnosed me with APS. They too say I have lupus like symptoms but not full blown lupus but plaquenil has helped those symptoms a bit.

[stillwaiting in reply to TJSTICKYBLOOD]

Thank you TJ

I hadn't heard of the people being told they had lupus symptoms but not full blown lupus before. Thanks for saying about plaquenil - have been a bit worried about starting it. Can I ask if you are on warfarin?

Lynn.x.

[TJSTICKYBLOOD]

Hi yes I'm on warfarin and blood pressure pills to maintain my kidney function. I also take tramadol for pain.

[stillwaiting in reply to TJSTICKYBLOOD]

You're so kind to share - thank you.

L.x.