Just been diagnosed : Hello all . I’ve... - Hughes Syndrome -...

Hughes Syndrome - APS Support
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Just been diagnosed

Nesting
Nesting

Hello all . I’ve just been diagnosed with aps, I’ve been on clopidgroil for past 9 months . My blood has tested twice for lupus anticoagulant and I’ve had a mri scan that shows the remains off blood clot in my brain but never felt anything . Just seen consultant and he’s thinking about changing my medication to warfarin but will see him again 3 to 4 months time after this covid 19 .Not really wanting to change to warfarin for work reasons

10 Replies
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Hello and welcome... You will find this group useful.. We afe friendly bunch but not medical experts xxx stay safe hope your appointment goes well.. Warfrin maybe better option for you but you can discuss this better with your specialist

HollyHeski
HollyHeskiAdministrator

Hi and welcome, wise move waiting until virus over before going back into hospital for appoitments.

Warfarin is still the best anticoagerant for us, it's an anti clotter opposed to clopidogrel being an anti platelet. In the meantime, write down all the reasons you don't want to go onto warfarin, so you are ready to discuss with your consultant. Heparin injections is sometimes tried before warfarin or used if a patient can't take warfarin.

Its early days and we are all different, your consultant is the best one yo discuss this with, may be a bit of trial & error until you are on the best course for you.

Thanks for replying , yes will have to take consultants advice . It’s all come as a bit of a shock but just have to get used to it , thanks again . Simon

HollyHeski
HollyHeskiAdministrator in reply to Nesting

Yes, if other questions come to mind then please just ask.

You will get over the shock and you will get to know your 'norm'

Most of us learn to live a normal a life as possible, and you will get there too.

They discovered aps by accident I guess . Had tinnitus in left ear so they put me for mri scan and discovered a benign cyst in pineal gland nothing to worry about but then they discovered remains off blood clot in my brain so hence the blood tests but never felt any symptoms but yes just the thought of warfarin and work , But thanks again Simon

MaryF
MaryFAdministrator

Hi, and welcome, you have landed in the right place, for support and information. I think it a good idea to wait a bit to see you consultant in view of what is going on, however if you become unwell of experience any new symptoms I would get in touch with them by email as well as contacting 111. You will find people very keen to answer any questions you have on here, based on their own personal histories as well as some of us as administrators, trying to help as best we can. MaryF

Nesting
Nesting in reply to MaryF

Yes will wait and see and thanks for your advice and help . Simon

I had been having nervous spells which I called "panic attacks" for a number of months before I had a full blown stroke. An MRI found that I had been having mini strokes for quite some time. Good news: after going on warfarin for 1 year a follow up scan showed that all of that mini stroke damage was gone -- excepting one area in my visual cortex (which I use to blame my inability to find lost objects.)

Warfarin management has not been difficult for me, though others have had issues with fluctuating INR. If you on that med you should research how various foods effect INR levels (INR is a measure of how "thin" your blood is) and then keep a detailed log of foods, activities, warfarin dosage and activities. Within a few months you will notice and memorize patterns particular to you. For example: if I am out in the sun for a bit my INR will become higher (blood thinner.) But warfarin changed my life so much! Gone were the panic attacks, gone were the leg pains -- more focus and attention to my life. Warfarin was a life saver for me!

One more point: warfarin has a bad reputation due to bleeding episodes in patients who take warfarin because they have a sticky "spot" in their circulatory system - such as a heart stent. We take warfarin because we have sticky circulatory systems, so unintended bleeds are much , much less likely to happen with us.

Nesting
Nesting in reply to GinaD

Thanks for taking the time to reply and am glad warfarin help you and yes just the scare stories about warfarin putting me off but after reading your story I’m not so worried now and will do some research, thanks again Simon

Now been put on atorvastatin 20 mg tablet along with my usual clopidogrel 75 mg but seeing haematology consultant end of June so will see what happens next , hope your all well Simon

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