Recently diagnosed with APS......help! need some advice

Hi i have recently been diagnosed with SLE after being treated for the last 3 years with RA and sjorgrens....yesterday my consultant called me at home to say my last lot of bloods have come back saying i have APS, he told me I had to start aspirin straight away, and that i will have to start warfarin ASAP, he is trying to fast track a MRI brain scan for me as I have been suffering from vision problems almost like seeing under water along with feeling unsteady on my feet, forgetfulness, and difficulty articulating.......I had previously mentioned this to my consultant and it was just passed off as the brain fog of lupus....but now with these blood results it is now a major panic, he even said I need to be checking my blood pressure and if i feel concerned i should go straight to A&E, so i am feeling really concerned and to top it all I am working nightshift Saturday and Sunday this week.

Can anyone offer some advice on symptoms of APS and how to cope with it my consultant said i would need to be on warfarin indefinately!

I am trying to get my head around this as well as the lupus and feel absolutely fed up at the minute...so any advice would be gratefully received

Jan

4 Replies

oldestnewest
  • Dear Jani,

    I also really don't know what those exact symptoms are....but i have been diagnosed for APS. my advise is to stick to ur consultant's advices and take medication regularly.

    Firstly i was on Asprin. with Asprin i got a burning sensation and i neglected it. i really didn't know that the risk of that. Recently I got an acute thrombosis in Right internal Jaguar vein. it was really a life threatening time. i had to get hospitalized for fine 1 and 1/2 months. i was in ICU. now i am on Warfarin. And INR should be monitored regularly. Go to the doctor immediately if bleeding. take only the recommended diet.

    Don't get panic dear.....

  • Hi, I've had APS for the past 10 years. Symptoms are very similar to lupus but there is the risk of thrombosis. My main symptoms with APS are migraines, leg and back pain, dizziness. I've been on aspirin since I was diagnosed and 200 mg of hydroxychloroquine. Now Ive been diagnosed with lupus so they upped the hydroxy to 400mg. APS just means your blood is stickier than normal and so needs to be kept thin at all times. Hope you feel better soon and take time off to rest. Maybe you need to consider not working night shifts they do take it out of you. take care xx Shaheda

  • This has scared the bejesus out of me. I have those symptoms right now :o and I haven't even managed to see a Rheumy yet :( still waiting. Diagnosed with SLE by my Thoracic Consultant via having Lupus Pneumonitis and a load of bloods .... that was 3 weeks ago. Referral still not through for a Rheumy. Argh.

  • Thanks for the replys as they say and problem shared is a problem halfed, had an emergency appointment arranged by my rhenmmy with a eye specialist...after loads of tests and having my pupils dilated he said that my eyes seem healthy at this time but he stressed that with lupus and APS that it can effect vision......great news!!! Ive noticed with this condition any good news is followed by a "BUT", the truth is I dont think they know what route the disease is going to take, my consultant said that no two lupus patients are the same......which I think results in us being treated like guinea pigs

    jan

You may also like...