Antiphosholipid syndrome, lifelong anti coagulation. Now being stopped.

[Ally7]

Hi,

I wrote here a couple of weeks back, saying Guys Haem team want me off anticoagulants after 12 months prior telling me they will not ever take me off them due to precious possible TIAS and positive lupus anticoagulant and ab2gp1 blood results, waxing and waning over the years.

Even the dr who initially told me I should aim on them, letter dated 2018, cried with joy at last being told I would always be looked after! But even he has replied to an email this week saying I should come off them. It is the safest thing and research has changed. I am not under his care but prof h, prof dc and the haem are all having meetings discussing our cases.

Why please?

I'm scared of clotting, scared of the reduced quality of life returning. Ita bot fabulous now but better than being bedridden for 4 years!

Thanks for any help.

Ally

[MaryF Administrator]

You need to write a very strong letter and also make sure you have either a phone or video consultation with an advocate of your choice, your most trusted friend, neighbour, colleague or relative to fight your corner, I am sorry you are in this position and you are not the only one, you may have to save up and consider a visit to The London Lupus Centre, many of us have done. MaryF

[KellyInTexas Administrator]

Could you please give the reason(s) they are citing?

[Jillymo]

Hi Ally,

Sorry to hear of your plight.

I had similar issues with Guys who told me they do not treat the symptoms of APs ! They insisted on reviewing my brain scans and told me they would not anticoagulate me because I did not have cerebral APs.

I have those brains scans, in the reporting it clearly states cerebral ! I took myself off to another hospital where I would get the correct treatment and not be put at risk of further TIAs and strokes.

I know exactly how you are feeling but I can assure you your not alone.

[MLNC]

I find this new protocol confusing. I regularly take medical histories from heart patients who are almost always on triple therapy including an anti-platelet, and or a thinner. The rational is they are at risk of a clot. We belong to a patient base where 20% of strokes under 50yo are caused by APS and we are suddenly considered low risk? I have done a lot of research recently and am yet to find where removing coagulation therapy is recommended. We should all ask them to provide the evidence and I for one hope it is peer reviewed evidence, they are relying on.

[Jumper99 in reply to MLNC]

I find this current change to anticoagulation advice very disturbing. Not one patient in those that I know online, knows anything about any research to back this up. Yet there are people here who are very up to date in their knowledge. It’s so worrying for us.

My consultant who was excellent and wanted me to stay on clopidogrel as well as warfarin despite my age has just retired. My haemo has already disagreed and said I should not be on clopidogrel as well and now a rheumy has said the same thing.

I wonder what happened to make them all so nervous about giving too much anticoagulation.

[veganworld]

Hi Ally

The same thing happened to me at London Clinic. I found a hospital more local who are willing to listen. They are terrified at London for some reason to carry on with anticoagulation even though they came up with it all. So many repeat stories on here yet no evidence to back up why they have changed their minds about all this. Plenty of evidence as to why we should all be treated for life though. I can only think that all those on this form who have been put in this situation do something together to demand an explanation of why they have changed their minds and done a complete U turn. They don't even seem to understand or have empathy for why we are all scared this U turn. They forget we are human beings. I also cannot live a normal life if not coagulated, like yourself I would be bed ridden.

Kaz

[Wittycjt]

This is perplexing....any answers being found yet?