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An you get further PE's while on Apixaban

Posted , 5 users are following.

mackerrs
mackerrs

I am in the UK.  I have been experiencing breathlessness for 4 years but GP thought I had late onset asthma, however, I became extremely breathless over several days and was eventually diagnosed with a PE about 5 weeks ago, D dimmer level was 500, diagnosed of clots  confirmed  after a ct scan.  No signs of DVT, however experience groin pain.

Throughout pre diagnosis my ECG, BP and sats remained at normal level and until my lung started to spasm I was finding it difficult to be taken seriously, the D dimmer test was only done at this acute stage.

Docs suspect clots Had been there for some time and I was immediately prescribed Apixaban And discharged from hospital after pain was managed.  As the doc suspect the PE may be autoimmune related I have been advised I will get a follow up appointment with a hemotologist but have heard nothing since.

i have been experiencing ongoing lung pain and was seen by docs.  They have explained pain is related to damage to lower right lung and that as I am on Apixaban, and provided I take it exactly as prescribed, I cannot get another PE.

the last couple of days I have become breathless again, especially when active or speaking and I went to see the doc.  He checked me over but said everything appeared normal so left it at that.  This has continued, no sign of infection etc.  As my levels were all normal previously I am not reassured by that.

What I I want to know is can you get further PE's while on Apixaban and should I push the doc for further investigation?

At the last hospital visit I was advised that follow up appointments will be slow time as I am already on the medication they would give me anyway and still on the treatment dose of 5 mg twice a day.

i kind of feel abandoned on Apixaban and can't help feeling warfarin might have been a better option just for the contact and support you get post PE?

1 like, 8 replies

8 Replies

  • KMRC
    KMRC mackerrs

    Posted

    You absolutely can get more blood clots while on blood thinners.  They do not make the clot go away, they merely thin your blood in hopes that you don't create more of them.  Get in to see a hematologist asap.  They will take about 13 vials of blood to run genetic tests and lots of things I've never heard of.  They will check for cancer markers, etc., so they are very necessary in your journey thru PE land.  I have had one for 17 months, also in my lower right lung, and I have bouts of extreme pain, breathlessness, lack of energy, headaches... I was on eloquis at first but too many side effects and am now on Xarelto (rivaroxaban).  Fewer side effects, which is good for me because I have lots of auto immune stuff going on.  I have talked to other PE patients and some say the pain that goes all the way thru to your back hangs around for a very long time.  You should have another CT in 6 months.  If you still have a PE, you could be on Xarelto forever.  Since this is not a rare condition, studies are going on to improve treatment and to be able to more easily diagnose a PE.  I was misdiagnosed for 15 months, ended up firing the internist I was seeing because she kept trying to give me drugs for indigestion, steroids, whatever just to get me out of her office because she could not admit she didn't have a clue.  So, I took it out of her hands, found another internist, telling her all about what had been said and done and she immediately ordered a CT.  YOU know your body best and if there is pain, difficulty breathing and other symptoms, find someone who will take you seriously, get you diagnosed and treated before you get any worse.  Best of luck.  No matter what the docs say, get copies of your labs and other reports and do research, research, research.  The answers are out there.  Mayo clinic, Cleveland clinic and many other well known hospitals, especially teaching hospitals have websites about everything.  You will see lots of common and uncommon symptoms on these websites so don't get overwhelmed or off course!  I'll check on you later.  PES are not fun and can be dangerous, so be careful.  Only do what you can do and don't super exert yourself as long as a PE is in play.
    • mackerrs
      mackerrs KMRC

      Posted

      Thanks for the update. i also have a couple of autoimmune conditions, hence why they are testing for APS (Hughes syndrome). Also had to stop HRT on discovering the clots so am experiencing a mixed bag of issues. I have already been told I will be on these Meds for life (mother and son had DVT's previously and my PE's were unknown cause).

      in the UK we can't pick who we see and when, it's all down to our Doc to make referrals.  The registrar I last saw at the hospital told me it could take months for a follow up with the haematologist as i am deemed routine now that I'm on anticoagulant, however if this continues I will keep going back, they are just so adamant it's in my head!

      You are right though, pre PE I did feel issues I had were linked to my blood/circulation, breathing and chest/leg pains, and apparently it probably was.

    • KMRC
      KMRC mackerrs

      Posted

      I had no idea you could not choose your own doc in the UK.  It seems in that kind of system, deaths and long term, severe side effects don't matter.  Sort of like  survival of the fittest (and there are lots of us not in the fittest group!). I am certain, if things don't turn around, we will be facing the same issues.  I was able to get in to the hematologist within a week of being hospitalized and really got a great one, referred to me by my internist, who knows me and what I expect from a doc.  We are lucky that we can afford to go anywhere even if our insurance goes away (like when my husband retires...) but I recognize that most are not as likely to be able to afford to pick and choose but at least our hospitals (in the US) must treat you if you are critically they have the option, once a person is stable, to transfer you to another facility, which is not an option I would like to happen to me.  When I was sent to the ER from the imaging center, several docs told me, "you have a life threatening condition", yet once I was sent to my room, a doc came in and said, " I am going to give you a pill and send you home".  I was speechless but my sister was with me and she lit into him about what we had just been told in the ER.  I ended up staying for many tests for 3 days and was sent home with eloquis and an apt with a hematologist!   Eloquis had lots of side effects that were worse than the PE itself so I was switched to Xarelto (rivaroaban) and am doing better.  I continue to have times that are extremely painful and leave me breathless and with low oxygen, headache, nausea, everything I had at the onset of the PE (that was misdiagnosed for 15 months).  I am wondering if I will ever feel like myself pre PE.  Or will I have another PE that goes to my brain or heart?  All my test results are not in, yet, and even once I do have them there are no guarantees.  C'est la vie, huh?  Keep doing your research to either validate what the docs say or to find out you are not being told the whole story.  Docs tend to think patients either do not want the bad news or that they cannot understand it, so it is so often left unsaid.  A true tragedy, in my eyes.  I want the truth, the whole truth and nothing but the truth and those who do not question (everything and everyone) the folks who regulate your care seriously need an advocate.  Good luck.  I hope you get better and we'll see what my labs show in about 10 days.
  • steve_1966
    steve_1966 mackerrs

    Posted

    Hi mackerrs, I'm in the UK too and your story is similar to mine in that my PE's were not diagnosed for some months and I had some disappointing appointments with doctors prior to the chest pain  becoming bad enough for me to be taken to A+E.

    The short answer is I don't know if you can get further PE's whilst on Apixaban.

    It seems true that if you did have further PE's that the medication prescribed would be an anticoagulant anyway and you are on a course of them so unless you have an infection you are already on the right medication.

    It is really difficult to be told you have a life threatening condition, be given a couple of pills to take every day and be sent home. I was discharged three hours after being diagnosed and it has taken me weeks to get my head round it. I'm four months in now and feeling better about things.

    as to whether to change from Apixaban it is a very personal choice and it seems that everyone seems to have their favourite. I started on Rivaroxaban but kept getting nose bleeds so I've moved to Apixaban and already feel better after only two weeks. I didn't fancy Warfarin as both my sons had been on it and were continually tired and they bruised so easily.

    You may do well to go on the NHS website and look at the NICE rationale for prescribing Rivaroxaban and Apixaban. There's a lot of information in the paper which is backed up by research.

    You could consider privately funding an appointment with a Haemotologist if you really want to see one sooner. Most consultants in the UK seem to charge about £180 for a visit. It's a case of phoning your nearest private hospital. Otherwise try to find out which Haemotologist your dr has referred you to and keep phoning to see if you can get in on a cancellation.

    dont forget that you have only been recovering from a serious condition for 4 weeks and your body really will need time to recover. My lungs still aren't back to where they were before my PE's. I don't get much chest pain now - just a tweak every now and then but I still get breathless more quickly.

    If you are worried and you feel the chest pain could be serious you could go to A+E.

    I do hope you start to feel improvements soon. I've had a really good week and I've been feeling "well" again (although tired)

    It does take time 

    • -.a-way_forward
      -.a-way_forward steve_1966

      Posted

      Hi Steve,

      There's two category's for clots.

      Nice/NHS should list a clot specific jargon glossary for those that read UK English.

      First Category is 'Provoked Clots'

      Second Category is Unprovoked Clots.

      A haemotologist is clueless with the second category. The current crop of NHS Nice underwriters, is in denial clots are a leading cause of death in the world. Unprovoked clots, for whatever reason could count for up to 25% of all clots, be it small, chronic, massive, major, gargantuan. With repeated unprovoked clots, anxiety, stress, trauma, VTE PTSD, depression is reality as there is no official process to provide closure for sufferers on a life/death sentence. With closure, the patient can move on with their life with more of a glass half full outlook.

  • mackerrs
    mackerrs

    Posted

    Thanks everyone for your replies, it's good to know I'm not alone in my thinking x
  • pamela_74124
    pamela_74124 mackerrs

    Posted

    I have had problems with PE's for many years. The lay 2 times were very hard. Took me almost 6 months to recover from one and 13 months to recover from the other. Saw a hematologist whil in the hospital but did not go for testing once I was an out patient. Had to be off warfarin for a week and was not willing to chance any more blood clots. Would not do testing in the hospital as my insurance Detroit not necessary at the time. Would only pay if it was done on an out patient basis. Went to a new PCP and she put me on Eliquis. I have not had any side effects from it like some people and it does not have the restrictions like warfarin does. No bruising for me like with warfarin either so far. It is costly but so far my insurance is willing to pay for it. I have been prone to PE's since I was 19yrs old and I am now 62. Just had my last major one 9 1/2 months ago. I live in the US and hope that you guys in the U.K. Can get some help. You do have to research on your own and advocate for yourself. Even though I have had this for most of my life I have run up against doctors who who doythink I know what I am talking about. My previous doctor and my present doctor are great. They listen to me and when I say I am having a problem they move now!! I am thankfufor that!!

    • mackerrs
      mackerrs pamela_74124

      Posted

      Thanks for this.  I am now 9 months post PE's which were classed as unprovoked.  

      I have had several blood tests, I don't have any clotting disorder, but have been continued on a maintenance dose of Apixaban.  I am happier taking it than not due to family history of Clots and the face I had a PE and no cause identified.

      since the Clots I've also been diagnosed with Fibromyalgia and still struggle with widespread pain, poor sleep and anxiety.

      I suspect after reading about the symptoms, I may have post thrombotic panic syndrome and wondered if anyone else on the 'new' clotting meds experienced this too?

       

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