Blood clots with flare

[Budbear]

Hi everyone I am new here, so hello to you all and I hope you are coping with the current lockdown OK. I was diagnosed with an autoimmune disease in late February, they told me that most of my markers indicate Lupus but not all. I have suffered blood clots including a Pulmonary Embolism which thankfully dispersed without complications. I am currently bed bound after developing a blood clot in my foot, the pain is intense (I'd say a 9 much of the time), but I wanted to ask if anyone else had suffered the same kind of clotting with flares? I have spoken to the vascular consultant and hoping to speak with the DVT nurse tomorrow, any advice or shared experiences would be welcome. Thanks in advance.

[Jmiller623]

Hi BB! Welcome. Are you on blood thinners - warfarin, apixaban, lovenox? Have you been tested for antiphospholipid antibodies like lupus anticoagulant, beta2glycoprotein, cardiolipin? If positive, this changes management.

30-40% of lupus patients are antiphospholipid positive and 50% developed antiphospholipid syndrome over 10 years. You may have APS and lupus which would require lifelong anticoagulation esp with history of PE. Flares would definitely increase your chances for developing clots.

Hope this answers some questions. You may want to post on Hughes Syndrome forum as well. Hope you find answers soon! ❤️

[Budbear in reply to Jmiller623]

Hi,

Thank you for your reply and all the info.

I’m on 2 injections a day of Fragmin.

I’m under a haematologist now so will wait and see what happens, I will definitely mention this to them.

I will look at my records on line and see if these tests have been done, my platelets are a problem at the moment too as they are always too low. Lowest has been 37 when they should sit around 150+

X

[Jumper99 in reply to Budbear]

Low platelets are also a symptom of Antiphospholipid Syndrome (APS). As you also have a history of clots you need testing for APS as soon as possible. This is serious and you need to ensure that your haematologist knows about APS, there is still ignorance of the illness.

You need 3 types of blood tests, they are called Lupus anticoagulant, anti cardiolipin antibodies and beta2-glycoprotein1, and if any are positive they need redoing in 12 weeks time. I’m pleased you are on anticoagulation, please don’t let them take you off it before testing for APS is complete.

You may have APS as well as lupus but if your diagnosis for lupus was incomplete then you may just have APS, many of the symptoms are the same except for the clotting which is APS rather than lupus.

I hope you start to feel in less pain very quickly.

[Jmiller623 in reply to Budbear]

Glad you’re on Fragmin. Yes, please discuss APS with your hematologist.

There are many reasons for low platelets esp in lupus but for them to be that low, you probably have an autoimmune component meaning your body attacks your own platelets. Risk only gets higher if you’ve had transfusions esp any platelet transfusions. Hematologist can also discuss this.

Keep us up to date with any changes! Hope you feel better soon.

[Budbear in reply to Jmiller623]

Will keep you posted.

Thank you 😊

[Budbear in reply to Jmiller623]

Hi,

Hope you’re keeping well.

Just an update, I spoke with my haematologist and I was tested for APS showed negative!

They have now put me on Apixaban and hopefully that will help me 🤞🏼

Thanks for all the info again.

Stay safe x

[Jmiller623 in reply to Budbear]

Great news! I’m glad you don’t have APS! Hopefully apixaban will be successful.

Be well and stay safe! ❤️

[Budbear in reply to Jmiller623]

Thank you.

Fingers crossed and you stay safe too xx

[svfarmer]

Just wanted to say Hi - I can’t offer any advice but hope you get better soon x

[Budbear in reply to svfarmer]

Thank you x

[Kell12]

Hi, yes I also had a PE, diagnosed with lupus and tested for antiphospholipid, I am now on warfarin a high dose inr between 3-4 no problems since with clotting.

Take care

[Budbear in reply to Kell12]

Hi,

Thank you for your reply.

Pleased to hear you no longer have Clotting.

I am on 2 injections a day of Fragmin.

I am now under a haematologist so will wait and see what happens.

X