28 Year Old - PE Recovery

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Hi, I am a 28 year old male. Back in early march i had a very serious PE very suddenly which was then rooted to a DVT in my leg. However the cause of the DVT is has not been resolved by the doctors. I have been placed on a course of 5mg Apixaban for 6 months of which i have seen no ill effects and started to exercise again.

I just wanted to know if anyone knew the likelihood of me coming off the medication after 6 months or whether i will have to stay on these potentially for life?

As a very active/social male the meds are preventing me from enjoying a lot of social activiites. Just wanted to see if i need to prepare myself mentally for the fact this could become a life change rather than a short term.

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  • Posted

    I was told after 2 PE's its medication for life, and I am on Apixaban for life with no side effects so far. Had Rivaroxaban first with loads of side effects.
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    • Posted

      Hi there supertractorman

      are you still viewing this site..just curious what side affects did you experience with Rivaroxaban, my husband has been on them nearly 3 months and has just experienced blood in his water works quite alarming as it lasted a couple of days...didn't go to hemotology as didn't want to over react, however he went to GP and he didn't even know what to do!!! He just said he would write to the hospital,,, I assume it'll be hemotology! My husband is under a urologist and waiting to have surgery on prostate (low grade cancer)... PE lower right lung after long haul flight....hence have now waited 3months for surgery and finally been cleared for General Anesthetic and operation at last it's been a long and worrying wait...all because this PE...

      just hope he doesn't get any more side affects like this before operation..

      Did you experience this side effect..

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    • Posted

      Carolyn,    The main problem I had with Rivaroxaban was violent nose bleeds every day, and they would start without warning.  It took me ages to get a switch to Apixaban and never had a problem since. I was told that Apixaban only gives half a dose at a time and it is 12 hours before the next, therefore the concentration is at the one time with Rivaroxaban. Your husband will probably stop Rivaroxaban for 3 days before his op and go onto injections in the stomach for blood clots while in hospital after.  Generally I have felt better on Apixaban, but I also have so many other tablets due to Prostatitis and Prostate Cancer it sometimes is difficult to pinpoint all side effects. 

       

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    • Posted

      Thanks for quick reply 

      yes you understand the situation as my husband is taking Bicalutamide 50mg to surpress the male testosterone to put the Cancer to sleep so they say!! This also causes blood in urine which is 1 of the side affects, so just not sure which one it is...my husband saw chest specialist on Tuesday this week and he said he will come of the Rivaroxaban abt 1 week before op and  have glexane injections also have glexane after op, then go back on Rivaroxaban till abt August as it will be then 6 months in total...but he wants to see him in 3 months time to discuss this, just hope he hasn't got to stay on this any more, as he's sick of to death of taking all these meds..but still anxious abt the blood though, he sees Uroligist next week to sign consent form for op and just to tidy any points up...he also sees pre op nurse next Monday for all the tests etc, so I hope all the bloods come back normal...as want this op done so much he is having HIFU just a day case procedure,,, he is not looking forward to doing glexane injections again as bruising and lumps in belly were horrible as he was on this for abt 1 month and could not tolerate doing glexane so painfull, so that's why chest consultant put him on Rivaroxaban.. My husband is 61..

      will tell him abt Apixaban...hope you are feeling well and your prostate cancer is under control..

      Can I ask how were your PEs picked up and what caused them they saw my husbands on a ct scan while investigating his prostate,,, he had no symptoms att all

      Regards Carolyn.

       

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    • Posted

      Many thanks Supertractorman for quick reply..I have written a reply back but apparently it's being moderated don't know why but hope it gets posted

      Look out for it

      Many Thanks

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    • Posted

      Hi,

      There should be a department within all NHS hospitals that will have an understanding of provoked & unprovoked thrombosis, at its simplest level, it could come under 'dvt/cardiovascular/pharma/surgical clot blockage' department.

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    • Posted

      Carolyn, Great to see your full reply.

      Only comments about your glexane injections are that they must be done slowly otherwise you will bruise badly, I think this is because of the blood thinners and nursing staff being in a hurry.

      I am not worried about being on Apixaban for life as no side effects I am aware of, and better to be safe than sorry.

      Three years ago I had a Heart Attack with a stent fitted and shortly after thought I was having another one, and then they picked up on PE after I referred to a pain in my left calf. At 6 months they stopped my medication and within a month I had another PE.  

      My thoughts are with you for Prostate Cancer procedure, and make sure your husband checks to see if he is due any Antibiotics for the procedure as a similar biopsy for mine resulted In Sepsis and continual pain even now.  I just want urine infections brought under control and if not may have to have Prostrate removed.  Can't have any Radiotherapy type treatment due to a bowel problem years ago and walls being to thin as a result.

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    • Posted

      Hello Supertractorman 

      thanks for reply yes my husband does them slowly but still lumps and bruises. and have just been told that he'll come of Rivabraxaban 48 hrs before op....hope he does not get any more after his op on the 27th🤔😬...we have just got back from seeing pre op nurse, everything is now in hand she did say George might be kept in overnight as he has a PE...have been given lots of reading material abt HIFU...is this the procedure that you had?? And yes he will be given antibiotics as a safe guard..also a cocktail solution to take 24hrs before procedure to clear the bowl out as HIFU goes in through the back passage...also he will have catheter for a few weeks😬I know he will hate it..so only 1 more apt to go now and that's just to see urologist who is doing the HIFU...and then count down for the 27th..

      i hope you get your pain under control and your prostate procedure done and you remain cancer free..

      shall keep you all updated with PE and HIFU procedure.

       

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    • Posted

      Hello again Supertractorman 

      where do you come from are you in the USA and can I ask how old you are

      my husband is 61 and were fron the UK

      regards

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    • Posted

      Carolyn,

      I am from Perth, Scotland and am 72 but had Prostate Cancer PSA tests for about 12 years now as on Active Surveillance which started in Derby. Whereabouts are you ?.

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    • Posted

      I have had nothing done to my Prostate other than a TURP, but everything else seems to have gone wrong along the line, and I blame my problems on Sepsis following a Prostate Biopsy.

      Have read up about HIFU and it sounds good, so here's hoping it is successful for your husband. If mine had to be taken out it would have to be by knife as my Bowel was damaged years ago, so a no go area for any form of Radiotherapy / Laser Treatment I was told.

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    • Posted

      We're are in Sawbridgeworth Hertfordshire..my husband was told first of all he could have active surveillance by Uroligist who gave us results after biopsy...which he had major problems with as he had to have catheter inserted the day after as he was hemroging also clots he was in agony and the catheter had to be flushed through ,,, he was in hospital for 3 days a nightmare...however he survived the trauma caused so he's not looking forward to having catheter after HIFU , any way it's a means  to an end... So to end the story we then saw consultant urologist /oncologist and he said no coz one of the core cells was 7m long the other 2 are 5m so hence HIFU ..but were told very low grade Gleason 6 this cancer is just  on one side ...I can go into more detail but will have to dig out my husbands letters from    Uroligist..

      i will reply to others on this forum with the details as I would like to give the right information. So keep reading

      regards

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  • Posted

    Who knows?  Well your doctor should know something.  I would suggest your being a little more proactive at this stage.  Are you seeing a Hemotologist?  What is the specialty of the doctor who is treating you?
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    • Posted

      Yes I am seeing a hematologist as part of my out patient treatment. However with a month to 6 weeks in between appointments you have a lot of time to research without any more updates.

      Just trying to gauge the likelihood that I will have to stay on the medication for life or not.

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    • Posted

      I don't know how your hemotologist will make that decision or whether he will just take you off after 6 months and see how that goes.  That is what my primary doctor did with me, he just had me stop and I had another PE after I went off warafin.   Then  to handle that clot they gave me I another Clot buster (TPA?) in the hospital That improved (broke up)  that clot and I was put on warafin again and have been on it forever.  

      I wonder if you should consider conferring with another specialist like a pulminologist?  I know I did not confer with any other specialists and I think that was a big mistake on my part that I made, because now after many years I am completly breathless with the slightest excertion.  I am now conferring with a Heart sprcialist that is a Pulminary Hypertention specialist that thinks I might have scar tissue from the clot in my lung that might have to be removed.   I am waiting to see him again to see what the results  of another lung scan shows.

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    • Posted

      Hmm i think i am just more hopeful than anything but understand there is probably a risk of it happening again.

      I had a Thrombolisis procedure done when the PE was discovered and my body responded very well too, due to my age and my good physical fitness. As i mentioned previously nearly 6 weeks after i have returned to exercising in the gym with cycling and swimming and have seen no ill effects in my lung performance or any signs of chest discomfort.

      As well as seeing my Hemotologist i am seeing a heart/lung specialist. After my PE i had a number of heart echo scans and CT scans of all surrounding areas which came back clear.

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    • Posted

      It sounds like you are doing everything right.  Don't ignore any problems in the future, if anything suspicous arises.   A heart lung specialist and a hemotologist is the way to go.  Don't lose them
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