Pulmonary Embolism Support Group

By far the most common form of pulmonary embolism is a thromboembolism, which occurs when a blood clot, generally a venous thrombus, becomes dislodged from its site of formation and embolizes to the arterial blood supply of one of the lungs. Symptoms may include difficulty breathing, pain during breathing, and more rarely circulatory instability and death.

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deleted_user 08/06/2014

I ended up back in the ER with severe chest pain last week. Felt just like the multiple PE pain I had on 7/7. Even though I'm on Xarelto I was nervous so decided to go. I now have pleurisy.
Meanwhile I had my follow up with hematologist due to
No DVT could ever be found. Some if my labs are off and I tested positive
For antiphospholipid syndrome. We are still waiting on more labs to come back . However looks like I will have to stay on blood thinners for life. He also added aspirin to help cut down
My risk of stroke and heart attack. As long as I can tolerate.
Anyone tested positive for this? I in the last year have developed MCTD(mixed connective tissue disease) as well as POTS(postural orthostatic tachycardia syndrome ) and things just keep coming.
I have to get my son moved in to college next week and I need to be well.

The bad part is I have chest pain often due
To the POTS and that is
What sent me to the ER when PEs were discovered. I was just going in go fluids so I'm afraid I'm not going to know the signs if I get
Another PE as I Always have the same symptoms on and off.

bsmith4421 08/06/2014

I was diagnose with aps in January. There's a great Facebook page that you can join for support as I have done. If you have any questions don't hesitate to message me!

IndyH 08/07/2014

Hi everyone,

I got a confirmed APS diagnosis this Tuesday just gone.

I am on Xarelto like you too (3 days onto my treatment), after originally being on Warfarin for 7 months. Has your hematologist said its safe for you to stay on Xarelto?

BSMITH4421 - which anticoagulant do you take to manage your APS?

Indy

bsmith4421 08/07/2014

I take warfarin. My hematologist and rheumatologist both feel that the xarelto is not yet proven enough to treat aps. I ask all the time to switch to xarelto but they won't let me.

jeremy1999 08/07/2014

I just had my APS diagnosis confirmed three weeks ago. I have all three antibodies in my system. I also have the Prothrombin G20210A Mutation - Heterozygous. I'm going to be seeing a Rheumatologist on the 26th of this month. The Rheumatologist is specialist who understands APS better than all of the other specialists; including the Hematologist. They also have to keep your INR above 3.0 due to the risk of re-clotting. I'm glad you have an answer as to why you clotted. I hope you feel better!

Jeremy!

IndyH 08/08/2014

For those of you based in the UK, the hughes syndrome foundation website lists the most prominent and recognised APS specialists:

http://www.hughes-syndrome.org/self-help/specialists-in-your-area.php#.U-UgQslwbqA

SunnySoon 08/13/2014

Can APS be tested for while on anticoagulants? I suspect APS somewhat due to some of my symptoms, but have not been tested for most things due to still being on thinners.

IndyH 08/13/2014

Hi SunnySoon,

From my understanding, it is preferable to test for APS off anti coagulation as the drugs can impact the APS markers (specifically warfarin impacts the lupus anticoagulant marker).

I, however, was tested whilst on medication as i had one positive test at the start of my anti coagulation regime in hospital. They thought it was too risky to take me off to repeat the test.

Indy

bsmith4421 08/13/2014

I too was tested while on warfarin. I had extremely high levels of beta-2, anticardiolipin antibodies, and lupus anticoagulant.

ce1502 01/14/2016

Hi everyone, I've been trying to find out aps/new anticoagulant information. After my pe nov 2015, I'm to be retested in march for lupus anticoagulant. I've bern on eliquis since the hospital. I'm desperate to find anyone who has aps and is being managed on the new anticoagulants?

renaec23 01/14/2016

Are they giving you anything to treat the POS tachycardia? I think I might have that as well.

ce1502 01/14/2016

Hi renaec, they didn't give me anything for that, it seems to have dissipated now for the most part. Are you taking something for that?

rmb 01/15/2016

ce1502, I have to ask why you're worrying yourself so much about APS right now considering you don't even know that you have it and you're not going to be tested for it for a couple of months. I've been on this board since 2007 and most people I've come across here don't even have ASP, or any genetic clotting factors, for that matter. They had other risks that facilitated their clots, ie hormones, long flight, etc.

You've been on eliquis for a few months and it has been working for you, whether you have ASP or not, so given that, isn't that a good sign?

I'm not trying to give you a hard time, just wish for your own sake you could just take a wait and see approach, until you have ALL the facts about your situation That's all any of us were able to do after our blood clots, wait to see what the genetic tests revealed and then go from there with recommendations from our health care providers. You're not doing yourself any favors by obsessing about this stuff right now because it's just going to amp up your existing fear and anxiety.

ce1502 01/15/2016

@rmb, I know, :( I'm actually embarrassed. I know that what you say makes sense.
I think it's because the hema said it showed positive then she would have to retest to confirm. The chance that it might be there has made me beyond nervous. I was so sure that bc and surgery caused it. Then I found out how scary lupus anticoagulant is. So, that's when I started worrying more about if the eliquis is working, since they haven't really been tested for that condition.
I think I'm also trying to feel like I can control this somehow, but I can't, and that horrifies me.

rmb 01/15/2016

What is it about APS that is so scary to you? I just think there are so many other health conditions to be diagnosed with that would put me over the edge and APS isn't one of them. I'm not trying to diminish your fears but just trying to understand really how much having APS would affect your day to day life other than taking anticoagulants daily. I'm on life long anticoagulants because of two clotting events with no known cause. All I can know is that my body likes to clot so I take medication that prevents clots. End of story.

I just want you to see that what ever the outcome of your genetic testing, it's all manageable.

ce1502 01/15/2016

Thanks rmb, what did it for me was finding out how volatile the lupus anticoagulant is and how strong a clotting factor. From what I saw, people who have that disorder have problems keeping clot free even with anticoagulants. It freaked me out so bad that I feel sick and anxious. I got so desperate to hear from someone with it who was taking a new anticoagulant and having success, so I could tell myself that there's hope, but no luck so far. One woman got back to me and said her dr won't prescribe the noacs for that since it's untested. Granted, that doesn't mean it wouldn't work, but it's the unknown that scares me. Then my pcp said yesterday that she tries to switch everyone to eliquis bc of the no monitoring, etc...
I'm a mess. I'm hoping so much that the test is negative, but was worried about my protection until then. It's driving me crazy.
Sorry for ramblng, I'm so freaked out I hope it makes some sense. I do appreciate your help and it's pretty much the same thing I would tell a friend. I don't know why I can't have it work when it's me :(

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