Heparin for APs?: Hi, I was diagnosed... - Sticky Blood-Hugh...

Sticky Blood-Hughes Syndrome Support
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Heparin for APs?



I was diagnosed with APS after a stroke.

I’ve been on clopidogril aspirin and mepacrine (was in hydroxichloroquine but reacted horrendously so was transferred into mepacrine which does wonders!)

The consultant and I have been discussing heparin trial to see if this alleviates my headache, blurred vision and dizziness.

May I ask though, why is heparin prescribes less often than warfarin? The consultant doesn’t want me on warfarin as I’m an athlete and only 20 but agrees heparin could be a good idea.

Thank you 😊 x

19 Replies

If you're not squeamish about giving yourself an injection each day-then it's worth a try. Warfarin is great if it works but I'm sure you'll have realised by now that everyone is different and reacts differently to meds. I could never keep a stable INR and having Raynauds as well, my veins are terrible to keep having twice a week blood tests. The newer anticoags are no longer recommended for APS, unfortunately. I also have a 100mg Aspirin as well as twice daily Clexane. One tends to bruise more easily but avoid the wild swings in INR (and no testing).

Luckily I’m not a problem with needles so it shouldn’t be an issue 😊 I think the thought process I’d heparin is better long term than warfarin or am I completely wrong on that?

Ii'm on it for the rest of my life but you have to make sure that you are not underdosed. It (dosage) is determined by your weight and although it can be a pain it does cure a lot of APS symptoms and your tummy can look like you've been gored by a bull, with bruises and lumps! I's also important that that you inject 12 hourly to keep things under control.

Hope that helps.

Thank you. To be honest I already look like a Dalmatian with bruises anyway so it can’t get much worse!

Symptom wise, I’ve found heparin almost cured my dizziness entirely on a 10 day dose post surgery which is the symptom alongside headache they’re wanting to try and help. Mepacrine is my magic tablet as that makes me feel relatively normal and functional vs non medicated me being unable to function or get out of bed.

Thank you for all your help x

Hey, I was also diagnosed after a stroke and have experience with these meds too.

Heparin is a sturdy and safer med to walrafin. You tend to bruise and have spontaneous bleeds on warfarin if you can't get the INR right, or you blood just won't thin.

I've been on clexane/Heparin for almost 10 years and swear by it. Your clotting can be tested to check you're on the right side too but doesn't need to be monitored so intensely.

HOWEVER, Heparin is really meant for short term as it can thin your bones to daily calcium is recommended for long term use.

Hope that helps

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Thank you so much. I was wondering how much impact cost had in the frequency of prescribing... all my medication has to be on private prescription anyway as my GP refuses to acknowledge my diagnosis (I’m unfortunately serro negative so despite the clinical trial of medication and being under one of professor Hughes specialists at London Bridge, she refuses to acknowledge I have the condition..)

My mepacrine costs me £240 for four months but they make me feel so much better it’s unbelievable so if heparin controls my dizziness and headache, it’s worth any price.

Thank you for all of this. I’m sorry to hear youre allergic to warfarin but at least there are alternatives x

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Thank you. We are in the process of trying to sort it out currently as she is a senior partner in the practice. I refuse to see her and see a part time GP instead but obviously referrals go through senior partners so it can still be a problem.

The GP is very good at being sneaky in how she does things but she did say to me after they suspected a TIA in A+E and told me to get a referral to neurology “you didn’t have a stroke it’ll just be a bad migraine” as if I can’t tell the difference. She refused to refer me to neurology so my parents went private and I was diagnosed with a stroke and 10-12 TIAs...

At the moment it’s sorting my health out and then sorting her out as she’s a danger to other people. X

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Your GP should be thoroughly ashamed. Can you find another?

Where we live unfortunately not but I refuse to see her and see a part time GP now, just the awkward one is a senior partner so she still tries to interfere

When I asked to be checked for APS back in 2007 my GP had never heard of it so my initial blood test was completely wrong. I changed to a different GP because of a few other things my then GP wasn’t interested in helping me with. They need to remind themselves that they have a little or limited knowledge on illnesses but they aren’t the specialists. We the patients know more than they do.

As APsnotFab says; change GP!!


HI, I hope your transition goes smoothly, it sounds like your consultant knows what they are doing, not everybody can manage on Warfarin, and some people have to use Warfarin with Heparin injections alongside, when their INR is not stable enough. A good friend of mine has had to transfer to injections only, and has done very well with that regime, best of luck. MaryF

I am also sero negative and have been on tinzaparin injections for about eight years . It has been so much better for me. My life was so limited and unpredictable on warfarin. I always felt like Ivwas carrying a block of concrete in my chest. Wish you all the best in getting over the GP issue. You definitely shouldn't be paying privately for medication

It’s lovely to find someone else Serro negative!

Sorry to hear about your warfarin but I’m glad you found an alternative. X

I’m on mepacrine too and aspirin and 20mg of Warfarin and my INR swings wildly. My range is 4.0-4.5 but currently can’t reach 3.0 so on Clexane as well. I look like I’ve been in a car crash. Bruises everywhere my stomach is black.

As has been said, everyone is different so it may be good for you.

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