How can I have more PE's while on Rivaroxaban?

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Hi,

   I spoke to my GP today who told me she had my CT scan's results back,

I asked if she could have a look and was told first that it was great news as my massive saddle pulmonary embolism has gone.

But the scan showed multiple blood clots at the bottom of both my lungs,

I asked how many was there in each lung and was told she couldn't count them all.

I'm not sure if I will still have to see my consultant as it's his specialised field,

 ( so hopefully he would know more)

But I was given  IV thrombolytics at the time when they found the saddle blood clot, I was told to save my life, and that the Rivaroxaban was to get rid of any of the blood clot that was left plus it would stop another clot forming as it thinned my blood.

So please can someone explain to me why have I now got multiple blood clots in both my lungs?

When it was only on the 1st April that they found the Saddle PE and they treated that with  IV thrombolytics and  taking orally Rivaroxaban, which I'm still taking.

Sorry I probably sound stupid as I thought I could not get another one while I was taking Rivaroxaban and also how in such a short time have I got more PE's in both my lungs? 😢

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  • Posted

    Hi Elizabeth.

    Has your Dr or INR clinic been checking your PI? If your results are below 2, your blood is thickening and can result in PE.

    That is what I read as I am or was concerned about my low INR result.

    Your reading should be between 2-3.

    I hope you find answers as I would like to know the answer to your question too.

    All the best and I hope that it would be dissolved soon!

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    • Posted

      Hi Mardie,

                          No I don't get tested as I'm on Rivaroxaban ( Xarelto) so I don't need to be tested.

      It's come as such a shock to me.

      Thank you for your kind words 🌺

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  • Posted

    This must be distressing for you.  I know with Rivaroxaban, it is harder to know your INR, and even being on anticoagulants a person can still throw clots.  I am on Warfarin and get INRs done weekly or more often if necessary.  My hematologist suggested mine be 2.5.  I like it to be a little higher. About 2.7.  I try to stay away from offending foods.  Best of luck.
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  • Posted

    I think you need to speak to the specialist and get his view on the clots. It is my understanding that only the thrombolytics can dissolve clots and that anticoagulants like rivaroxaban are administered to prevent clots. I am also led to believe that it would be extremely rare to get more clots whilst taking anticoagulants.

    At my last appointment with my specialist, I was shown the scans of my clots and it was like looking for pearls on a shingle beach - I couldn't see anything. I was then shown the clots and it was still hard to make out (they seem to look for interupted flow rather than for a point of blood, if you get my meaning). And these clots were large and many.  It takes great skill, so maybe the gp is looking at old news and these clots were already there?

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    • Posted

      Thank you,

                             Only 1 massive saddle blot clot was found (which looked like a snake across both my lungs) even the nurses in resuscitation said they could see it and they said they could never see the blood clots.

      I was told I was lucky to have survived but there was no other clots at all in my lungs.

      I was in hospital for 10 days and the follow up CT scan were to see if the saddle blot clot had dissolved or if any was left, due to the pain I am feeling as at the time of the saddle blood clot I had no pain at all.

      My GP feels that now I've got the multiple blood clots at the bottom of my lungs, this now explains the pain ( her words) 

      I asked my GP to look at the results and maybe I should of waited to see my consultant as he would have hopefully answers for me.

      I'm just sat in tears as I just didn't think this was possible and to be honest I thought the pain was due to maybe scare tissue, infact I even joked with my adult children that my scan would come back clear and my GP would think I was a Hypochondriac. 

      But hey talk about life kicking you when you're down and all that.

      I'm sorry I'm so emotional at the moment but I'm so scared 😢 xx

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    • Posted

      Hi again Elizabeth (and canadagal),

      Hmm, sounds like the certainty that the specialists gave me about anticoagulants is overstated. A bit worrying....

      I doubt your pulmonologist would mind if you gave them a call Monday to try and move things on a bit faster.  I had a bad reaction to Rivaroxaban early on and a swift call by my (worried) partner to my specialist resulted in a GP visit to prescribe an alternative within a couple of hours. 

      I have now been on warfarin for just over 18 months and it has been a lot easier than the rivaroxaban.

      Hoping you get it sorted soon.

      Peter

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    • Posted

      Hi Peter,

                     Thank you,

      I'm glad you have got your under control,

      I have my GP visiting on Monday, so will ask her to chase my consultant as when I ring I tend to get his receptionist, even though she's a lovely and polite lady, my messages either get mixed up or not passed on.

      Thank you again for your advice as I think being on Rivaroxaban isn't as affective as I need it to be.

      I hope you health continues to improve each and every day 🌺

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  • Posted

    Hi Elizabeth,

    Ok as I have said previously I am new to pulmonary embolisms and my knowledge is very limited, I learn from here and my cardiologist. Here's what's been explained to me, yes lots of doctors say it is near impossible for clots to return whilst on blood thinners, My doctors have said that it is possible for PE's to return especially if you are in the hereditary group, I was also told that the newer blood thinners do not dissolve the clot they just act as a preventative for further clots. The clot(s)  will either slowly disappear over time and be eliminated naturally from where ever the clots maybe or scar over. I was on Xarelto myself but had a side effect to them so I was put onto Pradaxa, I had an appointment with my cardiologist 3 weeks ago and he told me that the newer drugs, NOAC's I believe the name of their class is not his preferred treatment for my multiple blood clots in both lungs, he would rather see me on warafin , he has ordered 2 tests for me to undertake before switching the medication, if he decides to, I had to have a VQ Lung scan, I was told some abnormalities if you could call them that were detected, I have to wait for the heart echo now then have a follow up with cardiologist to see what's going on. My cardiologist explained to me that these NOAC's are primarily used for AF ( Artial Fibrilation) and it's complications rather than blood clots, if that makes any sense to you, that's how I understood his explanation to me towards my clots in the lungs.

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    • Posted

      Hi,

       Thank you for taking the time and knowledge to explain to me about the blood clots.

      I'm really greatful and I think I understand but I'm just so scared as I never felt any pain with my first PE and the pain I've been having over the last few months has been  horrendous and to find out I have more but now inside my lungs was the last thing I expected to hear.

      Thank you again 🌺

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    • Posted

      Hi Elizabeth, sorry you're going through this. It's such a nightmare I know and I have concerns about recurring clots also, especially now after reading what Samuel has said.  I think we just need to ask as many questions as possible at follow up appointments, the specialists don't seem to be forthcoming with info. I really hope you start to feel better soon. 

      Sending you lots of positivity. X

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    • Posted

      Hi,

         Thank you hun,

      I think because I'm on Rivaroxaban, I thought  I couldn't get any more blood clots, ( false sense of sercurity)

      Plus to be honest as I've mentioned before I thought the scan would come back maybe showing some scar tissue due to the pain I've been experiencing, but to be told in one breath it's good news your saddle blood clot has completely dissolved,

      Then  the next breath, but the scan is also showing you now have multiple blood clots at the bottom of both lungs was a complete shock to me.

      I just feel sick and yes very  scared.

      It's like what's coming next?

      I've never smoked, I don't drink,

      I love my garden and my allotment,

      I do love cooking and my only vice is I love eating my cooking/baking but I was a healthy active person.

      Thank you for your kind words and hopefully we can learn from each other by going through this together.

      I'm hoping my consultant will be able to tell me more but I will have to wait for a appointment to see him 🌺

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    • Posted

      Hi Elizabeth

      I don't think the drs can be 100% on anything . When I was in A and E a few weeks ago the Dr told me that getting another clot whilst on anti coags was unlikely but it could happen, and I've also read a few stories of people getting them on anti coags. It's such a draining process this and it's made my depression/anxiety worse so I completely understand you and what you're going through. This forum is great and I've learned more on here than any info from drs. 

      I've still got chest and back pain and I have infarction in both lungs so the consultant said it likely from that. It's the tiredness and lightheadedness that really gets me down, so awful. 

      Sending love your way Elizabeth and hope you're still trying to enjoy some of the things you did before, though I know it's a struggle. 

      P ??

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    • Posted

      Hi,

      I was in the same boat symptom wise, I felt no pain what so ever, just chest pain which was consistant with my typical prinzmetal angina chest pain, the only difference that I noticed more was the breathlessness, once again we put that down to my angina. I did have left calf swelling and sore to walk on and we were treating that as a pulled / strained muscle as I was painting around the home and thought I may of twisted the wrong way, if it wasn't for a switched on triage nurse in emergency who knows where I'd be today.

      I am now experiencing the lung pain and occasional stabbing pains in chest, the most troublesome symptom for me is a burning sensation in the chest and middle of back, reflux pain but without the acid rising into throat if that makes sense, I have read that reflux pain is associated with pulmonary embolisms but doctors seem to disagree, who knows, I'm coming into month 5 and now only just experiencing the "text book" pulmonary embolism pains. I've always said that the laws of science never always works out in medicine and the sooner the doctors wake up to this we all might get faster treatment, don't get me wrong there are some fantastic doctors out there just a majority have this attitude that if it's not text book style it's not the problem.

      I had a doctor apologise to me for something he had suspected in the very beginning but was shot down when he presented my case to his " boss" the on shift consultant, I was discharged under the impression it was my angina, 4 - 5 days later I represented with my angina chest pain , paramedics asked why was I limping I said because leg is sore to walk on and swollen, they took a quick look and brushed it aside and agreed it was muscular, now when I arrived at emergency the triage nurse came out to have a look at my leg and she was more worried about my leg than my chest pain, had the D dimer blood test, troponin test for the angina, just to make sure I wasn't having another heart attack and a contrast CT Scan on the lungs, was kept in overnight and the doctor doing rounds explained basically what they had found, multiple blood clots of reasonable size in both lungs.

      Just a thought here, is it possible that some of the original clot had broken away and caused further blockages in your lungs ? As I said I'm new to pulmonary embolisms as I never ever expected to be a victim of this cruel and painful event either.

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    • Posted

      Hi,

      Yes I find the dizziness and the increased breathlessness to be very concerning especially when I didn't have it this bad when first diagnosed and I'm coming into month # 5 now. The pain is easily taken care of for me, I'm prescribed endone (oxycodone) for my prinzmetal angina pain and was told to take it for these newer pains and the reflux pain when required, helps tremendously in the pain department.

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    • Posted

      Hi 

         Thank goodness for the triage nurse realising your leg was important otherwise you might not be here today to advice/help me as well as others.

      I'm the same I've never felt this type of pain in my chest, back and my heart,

      I wouldn't wish this on anyone.

      Thankfully I found this group and I must admit I do feel more confident in others that are going through or have been there, as they know the pain, which can be hard to explain,

      I understand about the acid reflux as I get it at the back of my throat, like a burning acid that however much water you try to drink, it won't go away but I've never had any pain with that.

      Also what you mention about maybe the original clot breaking off into bits, was what one of my grown up children said could it be that too as I really don't know as I thought the clots were dissolved and couldn't break off,

      but again I'm new to all this.

      So it will be one of my questions I ask my consultant when I see him.

      Thank you for your advice and kind words and I hope you feel better soon 🌺

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