Antiphospholipid Syndrome

[Mrs6egg]

Hiya.

I was diagnosed with Antiphospholipid Syndrome some 27yrs ago due to Brain Clots and proving positive to a couple of Blood tests.

However, there is now a query over the diagnosis.

Whilst I would be super happy to not have APS and have to check my own INR I’m extremely concerned that the Warfarins I take and have been taking for 27yrs may stop.

I know they’re going to do more Blood tests but I feel I would need concrete evidence to allay me of any fears I have regarding ceasing Warfarin.

Has anyone else ever had their diagnosis of APS challenged?

I would be so grateful for any advice please.

Lots of love

Mrs6egg

💕💕💕💕💕💕💕💕💕💕💕💕

[Star13]

Who is querying the diagnosis?

[Mrs6egg in reply to Star13]

Hiya Star 13. I’ve only been living in Cornwall for 15 yrs and the Rheumatologist can’t find any evidence of previous clots. I’ve now provided him and my Gp with the information and although they are still going to recheck Bloods I’ll still be kept on Warfarin and the diagnosis will remain.

To be honest it would be absolutely fantastic NOT to have APS. I underestimated it’s severity. To have this ruled out though, to allay my fears, I would need concrete evidence after 27 yrs 🤷🏻‍♀️.

Thank you 😊 xx

[QE93]

hello, I had antiphosopholipid issues some years ago (2 dvts in legs). My clinicians have since said I no longer test positive for those particular antibodies. However they think I should stay on warfarin, I guess just in case? They have never talked about formally removing a diagnosis. I wonder why they are suggesting it? Unless you are having issues with the warfarin? Good luck with everything 🙏🏻

[Mrs6egg in reply to QE93]

Hiya QE93.

Thank you for your reply.

I’ve been struggling with APS for so many years and it’s becoming difficult to control with Warfarin.

My Gp suggested DOACs Direct Oral Anticoagulants. I was not happy about this and in fairness he has asked Haematology and Rheumatology for advice. I need a replacement knee and as surgery is APS’s worst enemy, the surgeons are very reluctant to operate! I’m in constant pain and mobility affected so badly. I’ve only been living in Cornwall for 15yrs and the Rheumatologist can’t find any history of initial diagnosis or history of Brain clots. So that’s the only reason they were thinking of testing all Bloods again and hoping the diagnosis could be ruled out.

However, now knowing the full history they will still repeat Bloods but will keep me on Warfarin due to past clots etc.

I’m so sorry for such a long reply… I’m hopeless at summarising 🤷🏻‍♀️🤣🤣🤣

Thank you

💕💕

[Star13 in reply to Mrs6egg]

Antibodies can come and go and also go up and down, however once you have been diagnosed with APS it is a very brave person who dares take that away. I’ve always been told that is for life and I would fight and argue till my last breath if anyone tried taking that from me without solid evidence.

As for swapping you onto a DOAC, doesn’t your GP read the literature? It states clearly that they are contraindicated for Antiphospholipid Syndrome.

You need to have a heamatologist who has experiance with APS. They will write a bridging plan for your surgery which will bridge you onto LMWH heparin before your surgery and again after and then back onto warfarin. I have recently had spinal surgery and it all went well so there is no reason why with the proper supervision yours can’t be done.

I hope all goes well.

[FandNnan]

I had a DVT a few years ago, didn't test positive for APS but do have SLE and associated conditions.

Consequently I was prescribed Apixaban for 6 months. At this point my GP queried with a Consultant Haematologist whether I should continue. The answer was to continue at a lower dose ad infinitum. This was due to my Lupus comorbidities.

Apixaban is a newer drug so maybe you will be moved to that and perhaps at a lower dose. 😊

[baba]

Are you aware of this APS forum on HealthUnlocked

healthunlocked.com/hughes-s...

[Mrs6egg in reply to baba]

Hiya baba. Yes, I was told there was but I don’t know how to find it????

🙄🤷🏻‍♀️🤣💕

[baba in reply to Mrs6egg]

If you click on the link I have put above it brings you to the forum

Then near top of page click on “+” to join that forum

[sewalongwithme]

Hi I have APS and I had my tests at a London Teaching hospital. The hospital local to where I live has tried to remove the treatment only once. They were trying their best to say they didn’t see the correct outcome on bloods, even tho the London hospital did. I have had a pulmonary embolism. They were met by my husband asking what would happen if they stopped the treatment? They said they would wait and see and my husband turned asked me what I thought about that and I told them no way. We returned to London who wrote and told them I required anticoagulation for life. I would love to stop this treatment as it is hard work to keep up with the INR checks and when I fall and bang my head(I did this weekend) I am then admittted for obs. I too have had one knee replaced and will have another done in May this year. The bridging treatment is hard work too but whilst warfarin is a concern I think being on the receiving end of a clot is also a concern. I will keep taking the tablets and will always challenge anyone who wants to take different action.

[QE93]

Do you self-test your INR ?? Been really helpful for me to get instant results if I’m worried, and avoids regular trips to clinics..

[Tonkotsu]

Do the doctors think you no longer have APS? Or that you may have to change your APS?After too much difficulty balancing the warfarin, I take apixiban for the APS. Things are stable, but because I also have lupus, the apixiban is necessary to make sure the APS doesn't flare with my lupus.