Heparin (CLexane) injections

Hi all, newbie on here but not to Lupus or Hughes syndrome! In addition I have another clotting disorder ( reduced activated protein C) Warfarin became unstable about 4 years ago and management changed to daily heparin injections. What I would like help with is information on the alternative medication Rivaroxaban.... any views please?

Thanks

31 Replies

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  • Hi, you need to discuss this option with your Haematologist as not all patients are suited, and if your injections are working well that may be your best option. I think APsnotFab has some pretty good advice on the detail with this. I know from reading on here that some have done really well on it and others have not got on with it, I guess it shows how different we all are. MaryF

  • Thanks for your comment Mary, actually had a discussion with my haematologist today and advice was to read the research and left the choice up to me. That is why I thought seeking other people's advice would help me with the 'small print'.

  • You will get some answers from others on here, I am not the right person as not on it, only Aspirin. I shall read with interest myself. MaryF

  • Thanks again for taking the trouble to reply, appreciated. I too will follow with interest!

  • Hi

    Here is a paper about the trial done in the U.K. My understanding is that it's suitable for patients who have had venous clots only and require an inr of 2-3. Many APS patients (myself included) have arterial clots and need a higher inr and this has not yet been approved for this group of patients. However some individuals still use it as everyone's circumstances are different.

    thelancet.com/pdfs/journals...

    Good luck

    Kelly x

  • Thank you for the link Kelly, will try to read & absorb.

    Had numerous Dvt in both legs and PE, when on warfarin my target level was 3.5 so your comment was very interesting.

    Thanks again, Julie

  • Hi Julie and welcome. From your above comments you would not be suitable Im afraid, well not yet anyway. Prof Hunt is very adamant about that as its still under trial for people who are on INR above 3 and who had arterial clots.

    I would stick to the clexane until more is known. I myself am on Fragmin almost 6 years now. Things will get better but we have to be patient.

    If you want to read about the RAPS trial it is in our Pinned Posts to the top right of this page.

  • APS not fab, do you inject every twelve hours? Trying to learn here. Thanks, Cindy in NJ

  • No every 24

  • Is your dose 1mg per kg then?

  • No and Im not dosed on weight either. I know some are. I did ask prof Hughes about this once and he gave me a complicated answer which I forget! I perhaps must revisit with it......

  • May I ask what your dose Is?

  • 10,000iu daily

  • Thank you, I am going to another specialist tomorrow, don't know if I can or will be switched! I am hoping

  • Clexane dosage is weight related (amongst other factors)

  • Not necessarily. When its administered for treating DVT/PE clots it is but when its being used as a preventative then not always.

  • Thank you very much for your reply. It does make sense of what my haematologist was NOT saying yesterday.

    For background to my situation, I have recently moved to Scotland so this was my first appointment at the hospital, so have yet to build a rapport.

    The only stand ho took was that returning to warfarin would most likely be unsuitable. He also mentioned that for APS patients the INR test itself was unreliable (which was news to me) especially as I have had unpleasant "events" whilst supposedly medicated.

    He left the decision to me and gave the reference for the report you mentioned ( which in and of itself was curious..... the medical profession has yet to fully embrace patient empowerment in my experience..).

    I think on balance I would rather play safe, he did remark that the worse that could happen on Rivaroxaban would be another "event" and it would be a simple matter to revert back to heparin. Easy to say ,but I am not at all sure that I am able or willing to chance that outcome.

    Thanks once again, I shall keep a close watch on your site for any future developments.

    Julie

  • What an odd thing to say.. The worse that can happen... Flirting with you having a stroke and its disabling affects is a bit flippant and not something that ever should be said or taken lightly and that comes from a person who had one because I was misdiagnosed - twice!

    I suspect that the real reason this conversation is taking place is because of cost. LMWHeparin is more expensive and there will be a push to get us off it from those who don't understand the alternatives very well. In my case at the moment there are none. Leaving the decision to you is a step too far I think and more like passing the buck. Then if something goes wrong they can say well I told her the risks but it was her decision!

  • APSnotFab, your réponse is like a breath of fresh air...

    I left the session bemused more than anything, slightly flattered I was being enabled to make a decision and confused that direct advice was avoided even when I attempted to put him on the spot.

    My last "event" (can't abide that term) was TIA whilst in hospital, the surgery team failed to follow the warfarin/heparin protocol set out by my haematologist and that was the result. I can honestly say that his casual remark of the "worse thing.." disturbed me a great deal. On the positive side I was seeking out advice from the internet as soon as I got home so the silver lining is I found your group!

    I am aware of the cost issue but you would think that the negative consequences should be taken into account, for example I was an impatient for an additional 10 days, wonder how much Clexane that would have bought ?

  • I knew you would have the finer detail APsnotFab ! MaryF

  • I have been on Rivaroxaban about 2 years now and have had no problems. I went through the Warfarin (unstable) Clexane (developed clot) and changed to Rivaroxaban. I see Haematologist every 6 months for bloods and check ups. I also have an Apirin daily under his instruction. For me it's very convenient-no food issues or dose changes just take it every evening after dinner. It does need to be taken at the same time each day for best benefit.

  • Thank you for your reply.

    It is encouraging to hear success stories and I am glad Ozchick that things are working out for you.

    I suppose the difference is although the actual process of taking daily injections can be unpleasant the upside is I have been stable for the last four years and that has given my confidence and lifestyle a much needed boost. Had I had yet another clot whilst on Clexane I am positive my attitude would be very different.

    Faced with changing what is working for the convenience of oral medication that comes with unquantified risks? I think I might sit it out for awhile.

    Thanks again for your input.

    Julie

  • Hi Julie.

    I agree with my colleague, Mary.

    I'm also not the right person to answer this one, as I am on Frgamin injections.

    Dave

  • Thanks anyway Dave. Actually I have been deeply impressed by the quality of the responses and can't thank you all enough especially the in depth knowledge displayed by APSnotFab.

  • Thank you Julie that's nice to know.

  • Hi Julie! In the 1990's I knew I had clotting problems but APS was not definite diagnosis at that time. I tried low molecular weight heparin for one month without feeling better. Then I had a trial on Coumadin and once I got my INR consistently above 2, the trigeminal neuralgia was resolved. Turned out it was due to jawbone damaged by sticky blood not nourishing bone. Caused avascular necrosis in jawbone due to ischemia. Nancy

  • Sorry Nancy, looked it up, I am surprised at myself that I didn't know Coumadin was a brand name of Wafarin....... never to old to learn

  • Goodness me Nancy that's sounds very painful. Have you had any problems since or has the Coumadin continued to control your condition?

    By the by I was diagnosed in 1996 sounds like I was in the 'lucky' half of the decade... Also I have never been offered your medication

  • For 8 years the jaw pain was so horrible I thought I would lose my mind. I was skeptical that Coumadin could help, but it did.

    Those if you who take fragmin, how often do you take it? Here we take lovenox every 12 hours. I wonder what is the difference. Nancy

  • Hi, I was unsuitable for warfarin, so was on clexane, clopidogrel and asprin daily for 8 years. I have a arterial clot in my subclavian. I changed to riveroxiban last April, still on clopidogrel and asprin. I was outside the protocol but have total faith in my consultant and being monitored regulary. If I didnt have this trust I wouldnt have switched - she knew how my APS effected me & treated me individually.

    I wouldnt change if I was you until you have a relationship with your new docters and until trials for the drug have been carried out further on arterial clots.

  • Thank you Holly, I agree with your assessment, before I had quite an open and honest relationship with my haematology consultant, but this new chappie is quite different. It takes time to build up trust so I think change during the current uncertainty is, as you say, unwise.

    Thanks for sharing your experiences, through the various posts I am beginning to grasp the issue better, and as they say, knowledge is power....

    Sounds like you are in good hands, best wishes, Julie

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