I was diagnosed about a month ago. I was hospitalized with bilateral PEs. I have been on eliquis since but my pulmonologist is putting me on warfarin which I read is what I should have been on. At my follow up with him yesterday, he said I was triple positive. I know I still need another round of testing to do. I tried to get comfort from fb pages because I’m terrified that I’m going to die from this but the pages don’t help my anxiety at all. Can you all tell me your experience with APS.
also, when did your doctor refer you to a hematologist? I still haven’t gotten a referral.
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I can’t comment too much on PE, as my APS has given me stroke and TIA on my brain, and my consultant suggests that this is where my risk will remain, might be the same with PE? Would be interesting to ask the question on this?
As APS is classified as rare, and was only really understood around 1986, it does take the docs a while to work it out sometimes, my own diagnosis took 2.5 years after strokes and TIAs, but once they’d pinned it down it was all systems go.
So, it’s great news that you are going on to the warfarin, it will help control your blood coagulation to be more ‘normal’ and reduce the risk of clotting and should help with halting the PEs.
It can take a while to get your dosage correct and they might start with one INR target range, leave it for a while to see how it goes, then follow up to see how it’s worked. I’ve also been told that in the early years of my treatment they’re finding a balance of risk… too much warfarin and there’s a risk of bleeding, too little and I’m at risk of TIAs, the consultant was very matter of fact about this. Again, don’t know how this compares to PE, possibly another interest question for your consultant?
It’s easy to say, but I do believe that the key is to stay positive, and remember that you have the APS diagnosis so they can treat you properly now, and with the meds in the right place you should be able to lead a normal life with APS. And, as you are doing, never stop asking questions
With the warfarin you’ll find out that controlling a steady diet is important, especially regulating a consistent intake of anything with vitamin K, but there’s almost nothing you can’t eat (except cranberries and grapefruit), you just have to keep intake of everything else steady. I also gave up alcohol, as the daily limits suggested to me weren’t worth the effort of opening a bottle of wine!
You’ll also have to look after yourself carefully on warfarin, avoid doing anything that might cut or bruise, and be super cautious about not banging your head.
Other than that, it’s been business as usual.
I really do wish you all the best with it all, APS is an exclusive club, welcome!
Thank you for your reply! I just feel like my pulmonologist can’t give me as much information on this disease as a hematologist, that’s why I came here cause who better to ask than people who are going through it. I’m less nervous after reading the replies. Again, thank you so much ❤️
Yes, my thrombo / haemo folks are really on the case. Been much happier since I’ve been engaging with them fully. When you’re punted around from pillar to post and with no diagnosis, just more and more tests leading nowhere, it’s really not fun.
Hi, Gina here from West Virginia. I had numerable mini strokes (confirmed by dozens -- DOZENS!-- of spider webby things on my MRII!. My strokes had gone on for years before they progressed to a point where i knew something was wrong. Since my diagnosis in 2001 I have had no mini stokes.. No clots in my legs. No what I had called "panic attacks," which were probably mini strokes. I have been on warfarin since 2001 and have been out of my INR range 3 times. Only 3 times. In 20+ years. I have never had excesssive bleeding problems. Warfarin saved my life. Now I will tell you that the doctor who diagnosed me and put me on warfarin told me that I should keep a very detailed list of foods and activities correlated with warfarin doseage and INR readings for a good month or so. That way I could establish which foods and which activities influenced my INR. We're all different. For example -- in me, my INR is more stable when I have a fluctuating dose: 7 mg 3x a week, 6 mg 4x. And sunlight does not only tan my skin, it also thins my blood a bit. Now it is true that my diagnosing doctor told me there were some activities I should give up or not pursue. For me that was mountain biking. I still bike, but on stable surfaces. And I did not learn to ski. But I still walk or hike 5 miles a day (or more,) I manage my own house affairs. Warfarin saved my life! (And I too was triple positive, though since going gluten free my blood work is triple negative. But I stay on warfarin because every doctor who has seen that MRI does not want to risk their return.)
Thank you so much, I’m glad you’re better and your story gives me hope. I may try the gluten free diet, I never realized how much vitamin K rich foods I ate before this diagnosis so lowering my intake of those foods is going to be hard
The vitamin K is an interesting one and I get varying medical advice. My anticoag clinic say to avoid all food with vitamin k, but my consultant (a real APS expert) says not to avoid at all, but that consistency is key. In fact my consultant was annoyed that they’d said to avoid, and she was very clear that the meds will adjust accordingly.
So, for example, if you normally eat broccoli 4 times a week then keep eating it 4 times a week, but don’t change it to 2 times a week or 6 times a week as the first will result in raising INR and risk of bleed, but the second will do the opposite. It might mean a higher dose of warfarin, but that’s not a problem, as all it is doing is controlling the vitamin k effect on coagulation, so if you need more to do this because you like to eat broccoli then that’s fine.
And then it’s the same for all vitamin k foods, just keep intakes all steady / consistent and the tests will be the tests, the results will be the results and then they can adjust the dose in the initial phases to get it as accurate as possible, and with minimal fluctuations as you progress.
Like GinaD, I’ve been Steady Eddie for almost 9 months now, the only time my INR fluctuated high was on a holiday in Nepal when my green veg / dark salad intake went down to virtually nil for 2 weeks. As soon as I got back on the green veg all was fine again.
When I first went on warfarin I looked around for a “Warfarin Cookbook”, but nothing exists as there’s nothing we can’t have (except grapefruit and cranberry which I understand has some molecular interaction??).
I’m sure others will say to cut out the dark veg etc, but it’s still important to eat it, and the dose requirements will align as they need to, so I haven’t stopped.
There are studies which show people who eat a lot of vitamin k actually remain stable in therapeutic range longer compared to those who limit it. I eat a lot of vitamin k and try to stay consistent. Also studies show less arterial calcification in patients on warfarin who eat greens. My clinic, like Jon’s, says diet changes will be handled with more frequent testing for a few weeks and dosing adjustments until stable for four tests. So any time I want to increase exercise, which also effects INR, or add vitamins of more kale I just get tested more frequently until I stabilize.
I've never been told to avoid cranberries until thisost. I never have avoided cranberries. I even drink pure cranberry juice whenever I have UTI issues. .
Hi Gina, I guess it’s a US vs UK advice thing, our NHS is adamant about cranberries and warfarin, when I first started warfarin they wrote it on everything as a reminder and they bang on about it all the time!
I think pomegranate juice the same, plus grapefruit?
So sorry to hear you are ill. You will get a lot of information here from people, like me, who have the same or similar illness and situation. You didn't specifically indicate you have Anto Phospholipid Antibody syndrome (APS), but I will assume you do because of your triple positive remark. First off, Eloquis is contraindicated for those of us with APS. There is a black box warning that it should not be given to anyone with APS. There are many other options. You should see a Hematologist right away. If you are in the US please PM me and I can tell you about some of the best specialists, at least on the West Coast. Wishing you well.
Hi, do check in with your GP/Consultant before trying any new things. I am gluten free and have been for years, (being careful to eat 3 brazil nuts a day), to avoid selenium deficiency with the lack of wholemeal etc. It is important to direct any concerns or worries to your main consultant and also be aware you will probably settle down over time on your medication, there is a very good book around by Kath Atkin who has Hughes Syndrome/APS - Eat on Warfarin, she has the condition herself and worked out a very good balancing act with Warfarin and diet, please do come on here whenever you feel you need to! MaryF
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