Off Warfarin...

[kmac42]

I have had my first visit with the Haemotologist and has taken me off Warfarin and am now in aspirin...my symptoms of heavy legs, woozy brain and basically feeling it physically have returned...was wondering if anyone had been diagnosed with APS without the clinical side of things - blood clots and miscarriages????

[kmac42]

i meant *on* aspirin...

[nicolebarks]

I was diagnosed with APS from just a heavy set of dangerous symptoms. After my son was prematurely born I had pain/ tingling in my arms, numbness in my face, dizziness, and the worst was I would lose vision in my right eye everyday for about 15 mins. I started on heparin and warfarin but as my symptoms got better, my hema put me on just baby aspirin and plaquenil since I haven't actually had a blood clot yet.

[cami]

Yes, I have been diagnosed with APS with no miscarriage....never had childen...or clots....I am on aspirin and plaquenil....although for medical interventions I have heperin injections also as a prevention. I have blood tests once a month also.

[daisyd]

Hi why were you put on Warfarin in the first place,if I were you I would phone the Hospital and ask to speak to the consultants secretary and tell him / her of your concerns, hopefully this will be passed on to your consultant and you should get advice there

Love Karen

[kmac42 in reply to daisyd]

Hi Karen...thanks for your reply...i was put on Warfarin after a 2nd opinion by a doctor who did blood tests and i was found to test positive for Lupus Anticoagulant...i had all the symptoms of APS...the Haemo at my first visit says he has to stick to criteria and protocol and i have to have 2 more blood tests at intervals...i was concerned and asked him what happens if my symptoms come back and he said to go to my GP...

[Hidden]

Me. I was diagnosed after miscarrying twins but have never had a clot or anything more serious than a bit of numbness, tingling, nocturnal aches and pains and fatigue. However, my symptoms have progressed, I feel, and I now have a very fuzzy, forgetful head. As I'm studying I been moved onto Heparin instead of baby aspirin. Also, my antibody count is now higher than it has been previously. I'm holding off judgement until I complete this next set of exams but I do feel better generally.

[kmac42]

Thanks for your input...much appreciated

[BevL]

I had miscarriages and TIA's, foggy brain and back pain on walking, I am sero-negative APS and am on150mg aspirin which works for me. Does your Haemo want you to have a blood clot and doesn't he realise that sticky blood can give you all those syptoms? I was diagnosed without positive blood tests and have since shown up on the Lupus Anticoagulant test, but have been treated from the start. Ask your haemo about how he would diagnose sero-negative APS which relies on clinical judgement of symptoms. Generally, I've found that rheumatologists are more knowledgable. If your symptoms are getting worse, I would find a doctor who understands APS. I hope you get this sorted out soon, love Bev

[MaryF Administrator]

Agreed. I would be downloading that paper on seronegativity, and I would be giving each my GP and also the haematologist a copy of the this paper, plus also be printing out the details of the medical team at The Louise Coote Unit.. so they could make some special criteria busting phone calls! Mary F x

[kmac42 in reply to MaryF]

Thanks so much ok, are you able to let me know where to download the paper on seronegativity...i've never heard of this before...i'm also in New Zealand...

[MaryF Administrator in reply to kmac42]

ard.bmj.com/content/62/12/1...

ard.bmj.com/content/63/5/60...

orpha.net/data/patho/Pro/en...

Mary F x

[kmac42 in reply to MaryF]

Many thanks Mary x

[MaryF Administrator in reply to kmac42]

It is a pleasure and do look at the papers listed on the actual HSF website, plenty of info on there, best wishes Mary F x

[kmac42]

I'm very grateful for the support and advice/info you have given me... i'll get on to getting this info to the Haemo ASAP...

[Salty]

Kmac, I have never had a miscarriage (2 normal pregnancies) or clot but take plavix and warfain which in combination have aborted my symptoms of severe, daily migraines, trouble thinking, stuttering and bone pain (with evidence of metatarsal stress fracture/avascular necrosis prior to anticoagulation). My anticardiolipin and phosphatidylserine (one of the secondary antibodies for APS) antibodies are both positive (but not high titer). My brother had a major thrombotic stroke from APS which is why I got tested in the first place. I had been suffering from very severe migraines for 1.5 years before his stroke and they went away within 24 hrs on a heparin trial (aspirin did nothing for my symptoms)