hello all,
i suffered a stroke 2 years ago and was diagnosed with catastrophic APS. I have been taking warfarin along with ecosprin since last 2 years. Now my neurologist wants to stop warfarin and just put me on ecosprin. Is it okay to stop warfarin for APS patient ? Will it not lead to increased risk of stroke again?
I agree with APSnot fab. Especially since you had catastrophic APS- (i think hes out of his mind to take that chance) wouldnt be me. Is he who treated you for the C-APS, the specialist. I personally, and this is just speaking for me, have only found one neurologist that knew what he was actually doing about APS disease... please question him significantly before you might decide to do this. Best of wishes and lease keep us UTD= up to date with what you decide, Cindy
Well said!
Hi, if I was on Warfarin myself, which I am not, I would refuse to come off it, unless a) the anticoagulation being offered was ok for people with Hughes Syndrome/APS and I was under an actual Hughes Syndrome/APS specialist with full and up to date working knowledge of this condition. We have specialists over on the right hand side of the forum under 'pinned posts' and also on our charity website: ghic.world/
I hope you get some answers very soon. MaryF
Be very cautious & get 2nd & 3rd opinions. My son has was diagnosed with CAPS at age 17 after suffering End Stage Kidney Disease due to clots. After he was to old for Children's Hospital in Seattle, his new "Adult" doctors wanted to put him on aspirin. Thank goodness we were still in contact with all his previous team of doctors, who all said absolutely NOT!
Thank goodness, Darc,
Who are his Pedi team members?
Did you manage to assemble a good adult team who looks after him now?
NO! NO! NO! Your Neurologist should not be even considering this as an option! I have had two episodes of CAPS. Of which the second one very nearly killed me. If, like me, you have a predisposition to excessive uncontrollable clotting even when anticoagulated why on earth would your Neuro think it a wise move to stop the Warfarin? If I were in your shoes I would be looking for another Doctor who has a proven track record in how to treat patients with APS/CAPS.
I would refuse to be taken off warfarin unless they recommend other anticoagulant meds that are recommended for APS. I had CAPS and have extensive damage from the clots. My GP wanted to take me off my warfarin after 11 months as he stated I should be fine. A little over a week later I developed a clot in my leg again, and finally found a dr who knew what he was doing and am on warfarin for life. I havent really heard of others who have had CAPS ever being recommended to come off the anticoagulants. I would definitely seek other opinions before this guy suddenly takes you off the keds
I think you are very lucky to be alive after that Catastrophic APS episode 2 years ago... The word “catastrophic” itself defines how dangerous it is... Be very careful, do some research and discuss the risks with a specialist before taking any decision.
ecosprin is a NSAID not a blood thinner
Do you automatically get tested for APS if you have a clot ?
What medication options are there for aggressive APS ?
APS medication( warfarin) and plaquinel for lupus 
