Good morning everyone. I thought I would give you an update:
If you have been following me, you will know that I have been taking Warfarin for 5 years During that time my INR was never stable - my target was 4 but my readings swung from 2 - 16.8. I was tested at least once a week (even when away on holiday) in an attempt to stabilise me
No matter what I did or ate or drank I couldn’t stabilise. I was Lupus anticoagulant positive (but now not positive to any)
With constant wild fluctuations and consequently feeling so ill, it was agreed to stop Warfarin and swap to the Pfizer drug usually used to treat AF called - Apixaban or Eliquis (I will continue to take 75mg of Asprin daily too.)
I don’t know much about it (other than it is not suitable for those with triple positive APS). I will take 5mg at 8am & 8pm. I will have a blood test 7-10 days after commencing. Then that’s it no more weekly monitoring, which I feel a bit nervous of. I’ve always known what is going on inside me - coagulation wise.
So... I’d love to hear others experiences with this drug or anything’s I should be aware of. Thank you all and also thank you for the continued support over the last 5 years 💖 xx
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WendyWoo50
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I have been on this drug for about 6 years and never had any problems with it and now recently found out not suitable for those who have aps so I wait to see what my haemotologist says..I was like you on warfrin but never stable INR...so switched....I'm running out of options as fragmin and aspirin I clotted on aswell....i have had health issues last few years with dermatology endocrinology and gynaecology but never my anticoagulant therapy as far as I known... Hope you get some answers.. feel free to message me for more information have a good day keep safe😄
Don’t panic - it is unsuitable for APS patients who are triple positive because the trials showed that they still clotted. But those with only one positive or sero-negative should be ok. 🙏🏼 I hope this includes you 💋 x
I know of some triple positive patients on Apixaban that it has worked for successfully, even though as you say not recommended. Each of us are so unique in our treatment that's why we need an APS specialist.
For me, clexane, clopidogrel and aspirin work.
I'm glad they are keeping you on aspirin as well. It will take a while to gain your confidence, especially as no way of monitoring INR etc. But you will get used to a new freedom, no watching what you eat or monitoring etc.
Still worth at least initially keeping a diary of how you feel, noting if you get bruising or bleeding? It may help you work out your new normal.
I still do this, as it monitors for me my flares with sjogrens, which in turn can change my bloods too, occurrences of other symptoms like headaches etc.
They are probably all negative now because you were on soo much warfarin- it may be a false negative... the peaks and valleys of this disease suck... thinking of you and hoping you stay safe and that this works for you. Keep us posted😳My neurologists tells me he has other APS patients on this and are doing successfully but they dont have studies that confirm this: but there are patients out there. He always asks if if like to switch but i am too afraid after having strokes that lead me to finding out i had APS in the first place, im too afraid. I wish you some relief and the return of some “normalcy” in your life where you can find relaxation and enjoyment
I have read that the tests are negative for APS too Once u take Warfarin and questioned my haematologist. She said that wasn’t the case. We never seem to get any non conflicting information do we?
I failed it so quickly the clopidogrel did not have time to kick in.
I was on 10 mg in the morning and 10 mg in the evening.
I started at 7.5 in the morning and 10 Mg in the evening. Most APS patients do well on this. ( of my Rheumatoligist) . This is admittedly small sample size. She is currently writing up a paper. I was the only patient she has who completely failed .
Migraines returned in 48 hours, as well as seizures and three DVT’s. I was off of apixaban in about a week.
Utah did a trial Of apixiban led by prof Moller ( USA) in 2018 I think... and it was pulled early. ( 5 mg twice daily I think ? and no statin and no clopidogrel.)
Well- it wasn’t prescribed as required.
Most APS patients will require at least 5 mg daily if not more.
Hi Kelly, sorry to read that. We APS do struggle don’t we. We all seem to respond differently to others 😢
It’s day 7 now. (Tuesday) For me, I’ve blood tests day 9 (Thursday). I’m still so exhausted. Had little headaches but not migraines. Worst is just needing to sleep so much. ...But then I can’t sleep at night more than 4 hours. Tonight I haven’t had the awful pains in my leg muscles. I assume oxygen is better. My oxygen levels went from 89-93 to 97 this afternoon but back to 93 tonight.
It was pulled early - just as my APS specialty rheumatologist predicted it would be. She said the dose was too low, and it was not controlled for statins and clopidogrel.
Hi everyone. Hope you are all well. I had my blood test to check that Apixaban is working. Calling for results I was constantly told it was being processed. Then Friday (9 days later) I was told it was not in process at all - in fact it was rejected on arrival because my date of birth was incorrect on that vial (even though the other 5 vials I had taken at the same time were correctly labelled)
I’m to repeat it this week! So frustrating I don’t know what is going on inside me at the moment. Am I coagulated or not?
I think we have had Covid -19 here but to be tested we had to cross 4 counties travelling 69 miles to a testing centre. (Apparently we ordered the postal test too late to detect it, so that wasn’t an option). Needless to say we weren’t well enough to travel 2.5 hours each way for a test! Still it keeps the statistics down!!! 😡
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