This may be a little long. On June 9, I went to the ER with shortness of breath, a CT scan showed multiple bilateral pulmonary embolisms. The doctor started me on heparin and did a procedure to break up the clots in the lungs (I forgot the name of the procedure) LOTS of blood work was done and the doctor said I was triple positive for APS. I ended up getting released from the hospital a few days later on Eliquis. I had been taking that medication for a month. I saw my Pulmonologist on July 9 and that is when he moved me to Warfarin. I was taking Warfarin for 3 days before I started to get a pain in my leg. Being very paranoid, I went to the ER to make sure I wasn’t clotting in my leg. They didn’t find anything in my leg but did find a few new embolisms in my lungs. These ones were not straining my heart I was readmitted into the hospital, they put me on Lovenox and Warfarin and have kept me here until the warfarin is at a therapeutic level.
My question to you all with more experience with this condition is, If I had been on warfarin and at the therapeutic level, what are the odds that I would not have had to be hospitalized again for more embolisms? And if APS was already suspected then why wasn’t I put on warfarin to begin with?
My doctors won’t answer these questions.
My INR when I left the hospital the first time was 1.4.
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Vmarti
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Sorry to hear about your experiences.If you had been on a therapeutic level of Warfarin from your 1st admission, you would have been less likely to have had further embolism.
It's strange that you weren't put on Warfarin straight away.
Let's hope you get better management of your condition. Don't be afraid to question Dr's. I know it's difficult. I wish we had questioned them more.
If you're not already under a haematologist who is experienced in managing APS, ask to be referred to one or ask for a 2nd opinion.
I wish I had asked questions before I was released the first time also. I asked the doctor today (a different doctor than the first) if this would have happened if I had been on a therapeutic level of warfarin from the start. He sounded like he was trying to avoid agreeing with me. I’m so thankful this episode wasn’t as bad as the first but I would like to get it controlled so it’s less likely to happen again.
Unless it's changed, APS requires two sets of tests 12weeks apart for diagnosis, and you can't do the tests (I was told) when on warfarin. So APS diagnosis (which would be only reason for warfarin as opposed to newer safer drugs) takes months and can't be done on warfarin so I would be very surprised if anyone was put on warfarin straight away. This is based on my experience and understanding from 9 yrs ago, for me the process took 8 or 9 months before I was moved on to warfarin.
Now you are wiser you are more likely to ask the right questions. It’s quite normal to be put on heparin first and then be gradually put onto warfarin whilst still on the heparin and kept on it until the INR is in the correct range. Now you know that you can a) ask what your INR is and if it’s too low b) arrange with your doctor to have a supply of heparin to take at a certain level until your warfarin is back at the correct range.
Well the good thing is I can look at my health chart and see what my INR level is. I want to get the INR machine but it’s so expensive and my insurance won’t cover. I heard it’s not very accurate anyway…? I’m not sure about that
Machine may be accurate or not with APS - for some people it works for some it doesn't. you should have venous tests to cross-check for accuracy for several weeks/months and after that every 6 months at least. Whether it is worth it depends on how you value your time and quality of life - APS patients are typically harder to manage on warfarin and have to test more often (I need to do twice a week sometimes). Having to go to clinic for a blood draw twice a week is a big imposition, particularly if you are still working, compared to a fingerprick at home and a phone call, and that's before you start thinking about if you ever want to go on holiday again, or how your arm veins are going to stand up to the needles.
Hi! Sorry to hear about your conditions and difficulties, and apologies for my long response.
I do feel for you as I had a stroke, followed a year later by a TIA, but my APS diagnosis took two years, which is I finally started on warfarin.
I’m in the UK, so might be a different approach, but what I’ve come to understand is that APS has only really been better understood since around 1986, which is relatively recent, and given its ‘rare’ status the doctors often are either unaware of it, or don’t think of it until later.
For example, my treatment started off with the neuro folk who just said my stroke was bad luck, then the cardio guy found a hole in the heart (PFO), not uncommon at all, and they thought that could have been the route for a small clot to get to my brain.
It wasn’t until the TIA that the thrombo / haemo team got fired up, gave me another MRI, and found more evidence of minor stroke / TIA since the last scan that they then ran the APS tests, which I’m sure you know take three months.
So, to make a long story short, and in defence of the medical profession, they can only work with what they know, and sometimes that takes a while, and they’ve probably cleared off the easy wins and more likely causes before digging deeper. In the UK APS just isn’t the first thing they reach for to check, it’s a sad but true fact.
So, almost certainly you would have been less likely to have the follow up PEs had you been on warfarin, or they might have occurred but just at a far less noticeable level. I would just be reluctant to seek blame and regret, the past has gone and we should be thankful for the diagnosis you now have and the corrective measures they can now implement.
What I’ve also found is that being on warfarin is a real journey, and that for APS it can be a long, but necessary, process to get your INR at the ‘correct’ level, and this does need time and patience. My own consultant talks very clearly about the balance of risk, in my case too much warfarin and a risk of bleeding vs not enough and a risk of TIA. I just had another TIA after a year of warfarin, and had an MRI this week. Waiting on results, but consultant thinks they’ll tweak my target INR up by maybe 0.5-1.0, giving me a range of 2.5-3.5. It’s not uncommon for APS patients to be at 3.5-4.5 so I have some way to go, but they won’t rush anything, and it’ll probably be another year until a repeat MRI to check for any further stroke / TIA episodes.
It might sound worrying, but their point is that yes, I might have a small TIA, but this is preferred to a bleed if on too much warfarin, and the consequences of that. My consultant also indicates that APS tends to impact one area, so it will likely more often impact that area in the future. So for me it’s TIAs on the brain, for you it sounds like PEs. I don’t how correct this is, could be interesting to ask the question? If it is vaguely correct then at least the docs might have an area to more frequently look at and check?
As others have said, do ask lots of questions. It sounds like you’re getting the right department now, which should make a world of difference. There’s a lot to be gained from a regular dialogue, and I’ve found that now I’m talking to the APS experts they just love to learn more about it all, so they do give me lots of time and attention.
And I know it’s easy to say and sounds a bit cheesy, but keep going with it all, ride the wave, get involved, learn about APS, the treatment, the options, the management of it, especially around keeping a consistent diet for the warfarin, and embrace it so it becomes part of your life and who you are.
I do hate to say “try not to worry, and stay positive”, but genuinely I’ve found this is a great mantra!
A quick note on self test meters…they are ok, but before remotely relying on one I’ve been told to do at least 6 comparison tests alongside venous blood draws in order to understand the gap. As long as this is a consistent gap, eg mine seems to read about 0.2 higher, then this can be taken into account and is not a problem. The meter is then a useful first test, and if any doubt, especially if it’s reading a bit low, then it’s just a trip to the clinic to get a full test done. And it’s not just the price of the meter (also not free on the UK NHS unless you live in Scotland?!), but the test strips aren’t cheap either. (I guess if a meter is eg 0.5 high for one test and then 0.5 low for the next and is consistently inconsistent then it’s not a good idea to use one!)
Anyway…enough from me…good luck with it all, and welcome to the club!
If you are triple positive like I am it is important you are on a rather high level of INR. Read as much as you can about this illness and learn. Many organs may be attacked and we may see it later on when we get Pulmonary Hypertension, high blood pressure, leaking heart valves etc etc. The micro embolism and micro clots are difficult to see on a Scan and as this illness is very very rare there are few Doctors who know about it. Important to get a Specialist who works with these autoimmun illnesses at a daily basis. Hematologist or Reumatologist may know.
It is only the vein value which is the correct INR value so if you self test, it is important to do double test vein/finger several times so you know that there is not a difference between the two tests! I am triple positive like you and for us there can be big difficulties before we can maintain an INR- value that will really help us to avoid trouble with APS.
Warfarin is the best drug for us at present. I need an INR of around 4.0
By the way, I live in Sweden and have been on this site earlier for many years.
I would say that once you have been diagnosed with APS you should have been placed on life long blood thinners immediately ; I would also say that your INR should have been monitored daily until your therapeutic range had been attained. An INR OF 1.4 is a dangerously low level for someone with APS.
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