Heparin Injections Daily?

Further to previous posts (son in law's diagnosis of APS and Factor V Leiden ) his haematologist has now told him to arrange daily injections of Heparin, after discussion with her colleagues. He is to start these on monday 16/05/16 unsure how long for.

He is getting pins and needles and feels very worried about everything as he tries to maintain his busy work/family life. This is all compounded by worsened tinnitus and deafness in one ear. He has to drive long distances as an IT advisor and tries to take more stops on route since being diagnosed.

He lives with his wife (my daughter) and family in Hertfordshire and I get information from your forum to try help him. He is not likely to use any forum himself but my daughter does when time allows.

Is it usual to have daily heparin, initially a 75ml aspirin was suggested so this is ahuge jump?

Thanks to all replies to my previous posts.

18 Replies

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  • Heparin is a blood thinner and tbh injecting it daily is no big deal, many on here are on heparin. I've just finished a course of it while I stopped Warfarin to have knee surgery. Far better than a clotting incident trust me.

  • Hello teldee

    I inject Fragmin, 15,000IU, every morning and I also take 75mg Aspirin too and have done now for 6 years, all as ordered by Prof Hughes.

    I feel much better on Fragmin than I ever did on Warfarin.

    I soon got used to doing the injections, although I was nervous of doing them at first.

    Dave

  • Thanks Dave,

    but this has been regulated in some way with regular checks. Who takes responsibility for your test results etc. You had the best medical advisor and can trust his knowledge of Hughes

    Syndrome. Most people aren't so fortunate.

    Getting a diagnosis is hard enough, and then you need someone experienced that you can trust to treat you! How do they decide which anticoagulants to use?

    I wonder if Warfarin is more commonly used because it's easily available, well documented through its use in other medical conditions, and cheaper than the others. There seem to be so many variables to consider with its use though.

  • Hi teldee

    My colleague APsnotFab has already said some of the things that I was going to say to you; she, like me, is on Fragmin, long term.

    Unlike Warfarin, which requires regular INR testing to calculate the correct dose to keep a person in their therapeutic range, for me I needed to self test my INR daily, Fragmin does not affect a person's INR, as it work in a different part of the clotting cascade. As my colleague has said the modern Low Molecular Weight Heparins, like Fragmin, do not cause osteoporosis and no testing is required.

    I feel better and more stable on Fragmin and I have not had any clotting incident that I am aware of, unlike when I was on Warfarin when I had a major clot in my right hip and others in my bowel.

    The reason that patients are put on Warfarin, in my opinion is that it costs pence per day, whereas the size of Fragmin dose that I am on costs £8.50 per day. What is not considered is the saving in INR testing costs and the cost associated with hospital treatment for clotting when on Warfarin, such as I suffered.

    The other advantage of Fragmin is that it is unaffected by what one eats or drinks, unlike Warfarin, which requires great vigilance in the consistency of diet to ensure a steady level if Vitamin K intake, otherwise INR levels may fluctuate wildly, as they did with me. My cardiologist told me that Warfarin is what is called a 'dirty drug', due to the possible side effects of bleeding and its susceptibility to changes in diet and it would not get a licence if it were to be a new drug, today.

    I hope the above helps.

    Dave

  • Dave.. $8.50 per day is a bargin. My 18,000u Fragmin runs $160.00 per day. Thankfully good insurance!

  • Hi

    With exchange rate mine are £8.50 = $10.50ish.

    $160 is them suppliers having a laugh, there is no justification for them charging that kind of price.

    Best wishes.

    Dave

  • Is fragmen a lmwh( Low Molecular Weight Heparin)?

  • Never mind I found this answer below

  • Yes Im on LMW Heparin too and have been for 5 years. There is no risk for Osteoporosis like there is for the unfractionated heparin. I suspect they are doing a Heparin trial to see if your son-in-law's symptoms improve and then if they do he may stay on the injections or move over to warfarin depending on what suits him better. This is quite a normal step so please tell him not to worry. Its good that they are taking good care of him.

  • That's interesting ApsnotFab,

    What is LMW Heparin, is that the same as Fragmin? Hopefully my son-in-law will feel better but injecting himself every day is not easy to contemplate.

  • This link explains it quite well:

    evidence.nhs.uk/formulary/b...

    Injecting himself is also very simple. He will be shown what to do. He just pinches the skin on his belly between his thump and first finger, avoiding the belly button area, and then stick the needle in straight down. Push the plunger down very very slowly to avoid it stinging and also to avoid a bruise or little lump forming (which can happen no matter how hard you try for it not to), then pull the needle out slowly and press down hard on the spot where the needle came out. Don't wipe just press! Thats it! Alternate sides of the belly and areas to again avoid bruising. He will be given a sharps box for needle disposal. After the first one or two injections he will be a pro!

  • Low Molecular Weight Heparin. (depending on which country you are in Fragmin, Clexane and Lovenox are all LMW heparins) I was on these for a year before getting a DVT and changed to one of the newer oral meds. Injecting is really no big deal-the needles are very fine and take a minute of you time to prevent clots. No need to test and I found it much more convenient than all the blood tests needed when I could never keep a stable INR.

  • As a long term user of Clexane (LMWH) twice daily injections, I can only agree strongly with the associated positives that Dave and others have mentioned.

    I have no need or desire whatsoever to return to Warfarin.

    Laurie

  • Yes, likely life long

  • I totally agree with what everyone else has said. I feel better and safer on heparin. Injections are easy to get used too.

    Sounds like he is getting good care.

  • I use Fragminshots when my INR goes under an INR of 3.0 (my therapeutic level is an INR between 3.2 - 3.8) .

    For me Warfarin was a lifesaver but times goes and soon we have something better than Warfarin..

    If I could not selftest every second day and was not allowed to have a machine of myown I could not be on Warfarin. That would be too dangerous as I could not keep within the therapeutic level which is very important when on Warfarin. If the INR is too high there is a bleeding tendencey or if the INR is too low there is a great risque to clot etc etc.

    Best wishes to you and and your family!

    Hope you stay with us as this is a very good Forum for APS!

    Kerstin in Stockholm

    .

  • Omg I think it's wonderful that you are so dedicated to ur dear brother! To me it sounds like he is being so well treated and stick with what Kerstin, DAVE AND NOT SO FAB SAY! They're the real experts on here and save me all the time! I wish u and ur brother the best! You got it under good control just by having a doc who believes in you! I live in New York, USA and treated dastardly!!! Lol... Godspeed

  • Yep I I inject twice daily, is no issue for me.

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