hi all,
I’m in the U.K. I don’t have a specialist just GP and a nurse anticoagulant clinic I visit.
Are U.K. APS patients on warfarin suppose to have a heparin injections supply at home for emergencies when inr too low.
The nurse said it’s a good idea since pharmacies don’t usually have in in stock. but up to my GP.
thanks
Kevin
it’s very much a GP or specialist recommended thing. Personally I did and my specialist recommended it when I was on warfarin. I think you should ask yours what they want for you and at what level of INR you should start to use them.
Will vary from place to place and policy. Where I live, the CCG won’t allow prescription at all by the GP. It has to come from the prescribing hospital consultant.
Hi, this is a decision to be made with your Hughes Syndrome/APS specialist/consultant, some will do that if you have a pattern of needing this, so do make sure to check in with them about this, as soon as you can. MaryF
Hi Kev - I have been on Warfarin since a cerebral accident in 2005 maintaining an INR of 2-3 and on occasion 3-4. The only time I have used heparin is for Pre General anasthetic sugery to maintai anricoagulation levels when unconscious. I have never needed to use Heparin or keep it at home since but have my levels checked and adjusted via Warfarin only every few weeks. Hoe this is useful - Regards Gary J
I have been on warferin since 2005. Had heparin for the first time recently. Never heard of people having it in or thought about asking. I started a low carb diet and increased exercise a lot that threw my inr. Went on daily heparin injections for a couple weeks until my new diet / warferin / exercise levelled out. They gave me a week’s supply only. Disposable syringes. Stomach injections that were easy to self administer but led to some bruising.
I have been on warfarin since 2007. Used heparin a few Times pre surgery. I am in the US. I keep my diet consistent with lots of greens. My INR is good
Hi Kevin
It all comes down to your GP and cost because they have a shelf life and if not used within that time must be discarded so constant renewing is costly.
To be honest I’ve only used them when I’ve had to come off warfarin for operations to cover before and after the procedure. If you are being tested regularly you should be fine without.
HI Kev . I am in the states been on warfarin sulfate since 2009 - i do my PT/INR evry 3 days . heere in the states hey don't like high doses of anti-coags so i have 1 - 5 mg tablets of Jantoven on hand at all times and also Enoxaparin 120 syringes as needed if i fall below 2.0 on the PT/INR or if i am bridging prior to or post surgical procedures .
hi I’ve been on warfarin since the 90s and have only used heparin if I have come off warfarin for ops. The hospital then prescribes the dosage. And if I have fallen too low any other time my doctor has prescribed it for me. Never been a problem to be honest
I have a range of 2.0 to 3.5 but it can drop under I discussed this with my hematologist and if I go sub therapeutic I get put on enoxoparin injection until I become back into range. I suggest you ask to be referred to either a hematologist or rhumatologist with knowledge of of your situation.
I'm in UK, been on warfarin for APS for over 7 years, never been given heparin. I have been sort of told by the specialists that I would be given it to bridge if I needed surgery, but it's never been discussed for going low.
That said, in 7 years (until recently) I've only gone low briefly and only by 0.1, so hasn't seemed to be much point discussing. I usually keep spinach in freezer in case I go a bit high, and just drink more wine if I go a bit low.
[That's until recently, post-covid I've gone low repeatedly and by much more, but there hasn't seemed much concern from my (hospital based and consultant lead) anticoagulation service, I do plan to ask the specialist at next appointment but suspect it would still not be on the cards given my history over the years - as others have said, it's short-shelf-life and I would have thrown stacks away unused].
I’ve been on warfarin for 12 years now. I’m strictly monitored with blood tests every week. I’ve never needed heparin as my haematology/phlebotomist are on the ball. If your worried get some heparin but you actually won’t know for sure if you are low. Don’t have finger prick tests they aren’t accurate enough. You have to have venous tests. If necessary ask for a haematologist consultant they’ll keep you in line. APS has to be specifically monitored. I’ve had it since I was 18 but only diagnosed 14 years ago. Good luck and best wishes
I've been on warfarin for 14 years and the only time I've had heparin was when I was in hospital and had a saddle PE. I don't have a specialist , so I'm under my GP and the anti-coagulation clinic who I see regularly. I don't think I've ever been told I need to have heparin at home in case I go low (my range is 2-3) when my inr has been lowered than 2 the nurse just adjusts my dosage.
I always had them at home in case my INR dropped below 2, unfortunately they seemed to have the opposite effect on me and lowered my INR so much that I became hospitalised. I now take Nattokinase if my INR drops, it is much more successful for me in keeping within my target.
Thank you all . A great help
I have been on warfarin since April for mechanical valve replacement. I have a stack of heparin shots at home as I fell under range after finishing my hospital antibiotics and the anticoag clinic thought it would be useful to have quite a supply at home. Saying that, I have fallen under range and used them again. Maybe I am just unlucky but it seems that anything I take, interferes with my warfarin i.e. antihistamines for spring allergies, the flu shot, even panadol for a migraine. I wish I was like those who have posted who have been on warfarin for 20 years without issues. Also cannot get a home machine as they have proven to not be accurate in my INR testing so just blood tests every few weeks or more often if necessary.
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