Sticky Blood-Hughes Syndrome Support
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Heparin Trial


Haven't posted for a while as life has been... interesting... but have a question that I am sure some of you lovely people out there can help me with.

My daughter (aged 21) is about 6 days into a heparin trial. First days she didn't notice much, but we saw on here that many of you say you inject in the morning to get the most benefit, and since doing this she says she has been feeling much better.... for about 6 hours. Then she says she feels like she's had a wall dropped on her: she gets the shakes, feels sick, terrible brain fog and slurry speech.

I wondered if this is common and if it tends to get better over time?

Also how long into the trial did most people start to feel the full benefit? Is what she feels during her 'good' six hours the maximum benefit she will get, or could it get even better?

Finally, I am assuming that the point of the trial is to see if she feels better if she is anti-coagulated. Does the fact that she does feel better, albeit only for a few hours, mean that Prof Hughes should be able to jiggle with different medication types, combinations, timings and doses to get her as good as she can be???

oops - sorry, one more: Does anyone know if it is possible to have 2 doses a day - one first thing and another 6 hours later???

I know the lovely Prof will be able to answer all these questions when we see him in 6 weeks, but I am excited and impatient to find out more.

Thank you in advance for all of you who have taken the time and energy to respond to my previous posts - and to those that do so again. With all of you out there, I no longer feel so alone xxxx

13 Replies

I can't answer for you, other than to say that the period of time I was on it during pregnancy and 6 weeks after I felt so much better. Keep notes, like a daily diary see if you can remember from day one, the times taken and when she feels best, it will be useful for him and others looking after her medical regime. I am sure all will be taken into account. MaryF


I have been on heparin since 2008, without the us and downs you describe. Perhaps the heparin dose should be increased.



I think it is certainly a good sign that she feels better, initially, but unfortunate that it doesn't last.

I had a successful Fragmin trial, from prof Hughes, and then he moved me to Warfarin. However, after 7 years Warfarin was not working well for me and he put me back on Fragmin; a therapeutic dose based on my body weight, in my case 15,000IU, which I inject at 7:30 am.

Who is managing your daughter's Fragmin trial?

What dose is she taking and is this the correct therapeutic dose for her body weight; you need to check this with whoever is managing her trial? It sounds possible that she may not be on a high enough dose.

Please do discuss this urgently with the medical professional who is managing this trial.

Let us know how you get on.

Best wishes.



Sounds like you are going in the right direction. You say she is on Heparin - what type? Normally Prof puts people on Fragmin but sometimes this is not always the case. Everyone is different and perhaps a different brand might suit her better although Fragmin is pretty good. LMW Heparin does have a short half life so its possible that she is feeling this. Perhaps as she gets more into the trial her body will settle down. I recently upped my dose from 10,000iu to 12,500 iu and injected half twice a day with disastrous effect! So you can see that just small adjustment can upset things a lot.

As you say the Prof is used to tweaking so may perhaps add an antiplatelet to see if that helps, he will see how things are when you see him and adjust accordingly.

I think you will just have to be patient Im afraid and see how things go. This is not an exact science and not everyone will behave as they should! :-)


Thank you all for your replies - it really helps. She is on 10,000IU/0.4ml of fragmin. The GP didn't weigh her, but the trial was organised by Prof Hughes so maybe he had worked out the dose. No-one is overseeing the trial on a day-to-day basis - she was just given the pre-loaded syringes by the GP and told to let Prof Hughes know how she found it when she sees him at the end of Feb.

Interestingly, for those contemplating a trial, she has found the actual injecting fine - tiny needle, stingy but very little bruising.


Although I'm not injecting anymore-for 12 monthsI was on Clexane 80mg twice daily. I don't know if Fragmin is a similar dosage (I think it's roughly 40mg Clexane => 5,000iu of Fragmin) So I was getting twice her dosage daily. Unfortunately I developed a 15cm clot in my groin and was taken off it to start on Rivaroxaban. No problems for the 6 months+ I've been taking it along with 100mg aspirin daily. Sometimes it needs tweaking and the Doctors at London Lupus are the ones to sort your daughter out.


Hi. As is often stated, the only medical advice to rely on is that given by medical professionals and then only medical specialists when it comes to APS. However my experience with LMW Heparin - Clexane (Lovenox) has been quite positive.

After approx 10 years of Warfarin my hemo put me onto Clexane and have been using it for three to four years now. Initial dose was 100mg twice daily but for at least 3 years on 80mg twice daily. Clexane when used for DVT countering is usually administered twice daily..." the recommended dose of Lovenox is 1 mg/kg every 12 hours" ('Low Molecular Weight Heparins'

So, approx 1mg of Clexane for each kg of weight, administered 12 hrs apart. I have my morning dose when I wake up and evening does just prior going to bed. I believe the only native is the occasional discomfort of self injection but this aside, my health is the best its been in years and I believe that the Clexane has been the main contributor. I can't name the references right now but recent research indicates that LMW Heparin may also offer some support to the immune system when compared with other anti coagulants.

The fact that your daughter "feels much better" for some hours following the dosing indicates that it helps. I think many of us here know when our medications are effective by the fact that we too feel better when they are. More energy, better concentration, less tired, fewer aches etc.


a 'native' snuck into my reply when it should have been a 'negative'!


I have read info on twice daily doses of heparin... I believe it has a very short duration of action.

Obviously don't change anything without talking to your doctor...


Do check the dose with her weight. It should be worked out carefully. It is generally 1,5mg/kg. A small under treatment of dose can make a big difference. It also needs to be adjusted periodically to an updated weight calculation.

I had a second minor TIA last month due to my dose being 10mg too low as I had given my weight wrong over the phone to my consultant one week earlier after the first event. Should have known better as a pharmacist!

Once dose was corrected I felt much better.

Also has she been trained how to give the injections? They must be given under the skin at a 90 degree angle, whilst lying down, to ensure correct absorption. It should however be a once a day dose as it is supposed to have a lasting effect over 24 hours despite a 4-5 hour half life. However a twice a day dose is often used to equivalent effect.

Do discuss her symptoms with the GP.



This is so interesting - thank you. the answer is, no-one has weighed her nor she she been taught to do the injections, GP said she didn't need to. She just read the instructions - now she is more confident she does it wandering around her room. She is on 10,000IU/0.4 and weighs about 10st 11lbs - I will go off and try to do the maths. We're seeing the Prof at end end of Feb, so I'll keep a diary and hopefully he'll review the dose.

Thanks again everyone for taking the time to help x


From that information I assume that she is on Fragmin rather than Clexane. Therefore it is 100-200iu/kg according to the Pfizer product leaflet for professionals.

With the conversion from her weight, Fragmin dose should be 6,800 to 13,600iu/day depending on dose per kg required.

According to the patient information sheet she should be on either 10,000iu or 12,000iu for her weight of 68.4kg. She is having the correct dose by the sounds of things but it can be increased if needed according to prof Hughes or GP advice.

Do discuss this with your health professional as I am only going by the manufacturers product information sheets for pharmacists and patients.


The usual therapeutic dose for lovnox or clexane (2 different brands of enoxaparin) is 1.5 mg/kg daily OR 1mg/kg twice daily. The twice daily form is usually used for more potent thrombotic disorders such as clotting in the setting of malignancy or some cases of APS. Fragmin is a different low molecular weight heparin and is dosed differently.


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