I'm new to this platform but I am extremely happy I have stumbled upon it. It's been years of lonely health preocuppations and reading your posts has been almost comforting (not your medical journeys, rather the familiarity of them).
I had a first sudden PE 3 years ago in my early 20s, which turned out to be a symptom of APS. I was put on apixaban for 3 years till I had another clot a couple of months ago. Ironically, previous to that I had emailed St Thomas with a governmental doc that warned against using DOACs in APS patients because of the increased risk of blood clots. So was it a coincidence that I had one on a DOAC?! I will never know, I guess. After that, I was put on enoxaparin for 3 months and switched to Fragmin till I can be seen face to face. My hematologist is pretty sure that I will be put on warfarin after I'm done with Fragmin, but I really do not want to. I am a public health researcher so I did a fair amount of research on all these anticoagulants, and warfarin would not work for me because of my lifestyle, diet, etc. But I am also preparing for the worst.
Has anyone been able to advocate for themselves successfully in order to NOT be put on warfarin?
thank you x
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rokis
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Hi, years ago, when I was first diagnosed, I was on heparin, then I tried warfarin, sadly I was unable to stabilise my INR!I was blamed for eating the wrong thing or too much etc, I kept a diary.
After 3 mths it was agreed it wasn't for me and I've been on clexane since.
I've learnt since this is quite common for triple positive APS.
Warfarin is still the best anticoagerant for APS, try everything you can to make it work for you, your diet may need small adjustments, but there is a balance and you can live normally on it.
Hi holly, I have triple positive APS as well. They put me on warfarin. However, for some reason I cannot function on warfarin at all, exhaustion, nausea and severe inability to get my blood for weekly (sometimes more than once a week) blood tests to monitor very unstable INR. I begged them to put me back on enoxaparin and they agreed to give me a break from the warfarin. In which time, I have not experienced any of the symptoms I was getting from warfarin. However, now they are pressuring me to go back on warfarin as there are concerns about my bones. Do you have any advise for me? All I know is that I can’t go back on warfarin.
The concerns about your bones are real and you are young, so to stay on enoxaperin for many years will put you in the high risk group.I started clexane in my early 40s, was advised about the risks, every 3 years have my bones scanned, fortunately so far so good. But I had to weigh it all up for me personally.
You need to discuss this with your specialist, decide between you what's right for you. Sadly warfarin & heparin are our only choices at the moment. Hopefully one day we will have other choices.
HollyHeski.. please what are the bone problems you mention ? My legs ache permanently even in bed and I'm quite worried,my Gp doesn't seem to have a clue why ! I'm not on Warfarin as not had a clot SO FAR , just Clopidogrel and Aspirin occasionally?
Abstract - Heparin — Heparin causes bone loss by decreasing bone formation. The few studies of the mechanism of bone loss have revealed decreased bone formation, increasing bone resorption, or both. Since heparin is usually given for brief periods of time, its adverse effect on the skeleton should be trivial.
Please note, this should be explained before prescription, once on heparin bone density scans should be undertaken and monitored.
For me, now been on clexane for 20 years, all scans have shown no determination (yet)!
If you prefer and are prepared to stay on daily or twice daily injections, then I would stick firm with that option. I was unable to use warfarin so had to go onto dalteparin and have been injecting twice a day for many years. I would never give that up unless they come up with something that is proven to be as safe as heparin. The resistance will be on cost just so you know so you may have to justify the increased cost of heparin as a choice. In the end it will probably come down to your Dr's but you do have a say.
I have been on warfarin for 21 years now. I had been having migraines, DVTs, MRI confirmed mini strokes, but when I started warfarin it was like " over" with the snap of a finger. I did use fragmin to bridge before 2 orthopedic surgeries and I did enjoy being able to cook up some liver and onions! But, a relatively unknown advantage of warfarin? ( This from my original diagnosing hematologist.) Warfarin lowers one's absorption of Vitamin K., and THATS ALL IT DOES. The bleeding associated with warfarin is an expected side effect. Since warfarin has been in use for a long time, we have had the opportunity to note unexpected side effects, But there are none, excepting the consequences of low Vitamin K--which can be minimized by continuing to eat leafy greens while keeping that Vitamin K intake stable. So... I have 2servings of green leafies a day plus my mug of chamomile tea at bed. After 20 years the annoyance of monitoring my K intake plus all those warfarin agonist foods plus sun exposure plus activities have all become second nature.
Hi,I live in Sweden. I am triple positive APS with high titres all the time.
I did not like the thought of Warfarin to begin with but my Hematologist decided I needed that so I started. She has great knowledge of APS.
Warfarin has been my lifesaver since 2012. If you have got a knowledable Specialist I think you should follow his advice. Warfarin is the best drug for APS especially triple positive incl Lupus Anticoagulant.
Hi I was devastated last year when I was told I’d have to go on warfarin. I have a highly stressful, long hours job, fly regularly and meals are erratic at times. I couldn’t see how it could possibly work and I thought I’d had a career killing blow.
It took a little while to settle, but actually it’s been fine. I self test and am managed remotely by a great and flexible anticoag clinic. Self testing is 5 minutes of my day once a week (I normally do it in parallel to logging on to my computer in the morning).
The clinic are great at responding to my unpredictable life and if I recognise that things may impact my INR I just do an additional test and report if necessary (eg I’m flying unexpectedly on Friday and will do an additional test on Thursday).
Do I want to be on warfarin - no. Do I want to run the risk of clots higher than necessary - even less.
So I think my message is that it could well be less difficult and less disruptive than you expect.
HI, if Warfarin and the various other things tried do not work for you, I am sure it will be a consideration for your care. However I would try it out and see how you get along, The Book, Eat on Warfarin by Cath Atkin is a good start. I have never had Warfarin, just Fragmin when pregnant, and I was fine on that. MaryF
I came across your post purely by chance, when I noticed DOAC in the text. You sound like you have gone through many tough and challenging times.
I have a question you may be able to help answer.
I've got Hypertrophic Cardiomyopathy.
Microvascular Dysfunction
Atrial F./Angina, on minimal physical exertion and 3 stents.
Also got CKD Stage III & Diabetes.
Lymphodema (which is the absolute, cherry on the cake)
My Consultant Cardiologist has written and advised me that he wishes to change 2 of my medications, Clopidogrel and Aspirin over to DOAC's (no exact one specified) and that I should discuss it with my GP).
Which sounds odd to me, her not being a Cardiologist, plus she's never very supportive, even as a GP. So I don't have too much faith in following this route.
Obviously, and against my better judgement, I did only a little research, I too am a former health care professional. My overall take away from it, was somewhat negative and I'm not convinced to start on any of them.
I don't doubt my Consultant's reasoning for the proposed change, he feels like I am at increased risk for heart attack and another stroke (TIA 2018). However I take a vast cocktail of medications and insulin. Its taken the last 3 years to get the doseage and balance right, and at the moment they all tolerate each other pretty well, excluding a few side effects, chronic fatigue, weight gain . . . But I don't want to upset the apple-cart . .
Hi, you have a variety of issues which sound like DOACs would help, I suggest you write back to your consultant asking for the reason behind there decision? DOACs are anticoagerants where as clopidogrel and aspirin are anti platelets.This forum is for APS (Hughes syndrome, thick clotting sticky blood) - which makes our answer to you different, as DOACs are not recommended for us, especially triple positive. Have you been diagnosed with APS?
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Fragmin and warfarin 
Warfarin and Clopidogrel
Update re warfarin but no clots
changing to warfarin.
Warfarin and Altitude
