Sticky Blood-Hughes Syndrome Support
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Is it worth me asking for a trial of heparin?

I was diagnosed at the beginning of January and started on clopidogrel on the basis of bloods, miscarriages, headaches, memory loss etc at first the clopidogrel seemed to be helping the headaches (though nothing else), but they've now come back. It's not like they're transient things - they're v painful and wipe me out for most of a week. I'm seeing Prof K a week on Friday and was wondering whether he would consider alternatives, heparin maybe, or whether this is something I just have to put up with.

20 Replies

It certainly may be worth a trial of Fragmin (LMWHeparin).

My head is much clearer on it than on Warfarin.

Best wishes.



Thanks Dave. What's the significance of it being low molecular weight?


That's the modern Heparins and they don't cause problems like osteoporosis, so Prof Hughes tells me. xx


Yes!!!! Ask.


I wouldn't count on LMW heparins not causing osteoporosis long term ...think the jury is still out on that one...


Please see below!


Hmm, I'm osteopenic already, due to being coeliac, so maybe he won't want to try me on heparin.


Paleosooze, I have osteoporosis and Prof K was happy to give me a clexane (heparin) trial so I don't believe that's a counterindication. Do ask. I'm doing the trial now and certainly feel much brighter/crisper/clearer.

My headaches were already under control (most of the time!) with Plaquenil so can't personally comment on that aspect of clexane, but improving blood flow to the brain should certainly help.


Thanks v much Coppernob, that's v encouraging :) actually, thinking about it, I was On clexane when pregnant with my daughter (prior to my APS diagnosis - my protein s was low) and my bone density didn't suffer in that period.


Prof K did a trial with Fragmin and warfarin and there was no significant difference on effects. Here is the Pubmed paper below for those who are not members.

Both Prof H and K are of the view that those of us that are on LMW Heparin will not be on it for ever or certainly not long enough for it to make any significant difference as the new anticoagulants will come along and replace them eventually. Hopefully there will be an oral Heparin that will do what we need in the years to come!

Efficacy and Safety of Long-term Low Molecular Weight Heparin in Patients With Antiphospholipid Syndrome

Vargas-Hitos JA, Ateka-Barrutia O, Sangle S, Khamashta MA

Ann Rheum Dis. 2011;70:1652-1654


Occasionally patients with the antiphospholipid antibody syndrome (APS) do not respond to warfarin therapy, either due to a new clot even with presumed adequate warfarin therapy or to inability to tolerate warfarin due to conditions such as pregnancy. In these cases, low-molecular-weight heparin (LMWH) may be an alternative, but there are limited data regarding the efficacy and safety of long-term LMHW use in patients with APS. Therefore, Vargas-Hitos and colleagues investigated these issues in patients undergoing long-term therapy with LMWH for APS.

Study Summary

The authors performed a retrospective chart review of 23 patients with APS who were treated with at least 1 year of LMWH (43% patients had primary APS, 57% secondary). The authors evaluated the efficacy of LMWH in terms of recurrent clots and adverse outcomes, including bleeding, heparin-related thrombocytopenia, and osteoporosis.

The patients were 96% female, 96% white, and were a mean age of 42 years. They had a mixture of findings associated with APS, including venous and arterial clots (56%), pregnancy morbidity (26%), and central nervous system disease (17%) that included headache, seizures, or peripheral symptoms with abnormalities on brain MRI (high-intensity lesions). The most common reasons for a switch from warfarin to LMWH were clot in spite of adequate INR on warfarin (39%), followed by no improvement in neurologic disease, bleeding, and patient preference. Enoxaparin was used in 69% of patients and dalteparin and tinzaparin were used in the remainder; the median duration of LMWH use was 36 months.

After switching to LMWH, of the 23 patients, 20 had no recurrent thromboses, although it is not clear whether the other 3 patients had recurrent clot or just failed to have improvement in other clinical features presumed to be due to APS. Of the patients with neurologic symptoms, several had improvement of these symptoms while taking LMWH, although the specific numbers that improved are difficult to ascertain from the paper. In terms of side effects, 23% of the patients had osteoporosis, although all were also taking long-term corticosteroids. There were no reported episodes of major bleeding (defined as need for transfusion, drop in hemoglobin of >2 g/dL or bleeding at a critical site (eg, intracranial), or heparin-related thrombocytopenia.

The authors concluded that LMWH may be a safe and effective alternative to warfarin for patients with APS.


This is a small study but it still represents one of the largest series of patients with APS treated with long-term LMWH, and a reasonable take-home point is that LMWH may be an alternative in patients with APS who do not respond to or are otherwise unable to take warfarin. It is not entirely clear what the central nervous system disease in these patients represented because there may be overlap between multiple sclerosis (MS) and APS serologies, and multiple sclerosis may be related to abnormal central nervous system venous outflow which may be improved by anticoagulation.[1-3] Further prospective, controlled studies are necessary to determine the optimal use of long-term use of LMWH in APS, including what specific agent (enoxaparin vs others) is best and what role anticoagulation with any agent -- and in particular, LMWH -- should play in patients with central nervous system disease that is not clearly thrombotic or related to elevated antiphospholipid antibodies.


I think we have been through this before - this is study with average length patient treatment of 3 years ...

I draw your attention to (from viewpoint)

This is a small study but it still represents one of the largest series of patients


a reasonable take-home point is that LMWH may be an alternative in patients with APS who do not respond to or are otherwise unable to take warfarin.

Unless you really need to take it (ie your life is at risk) I wouldn't

What is needed to confirm these finding is more people to take it for longer...think about that.


Lucky67 - I'm trying to understand your point here. Would any of us be prescribed Heparin unless our lives were not at risk! All of us that are taking it are doing so because we cannot use warfarin for whatever reason and we have been put on that because of clotting incidents. Therefore in order NOT to have another life threatening clotting incident again we use LMW Heparin. I'm sure we would all rather not do so, I certainly would, I would rather NOT have this dam disease to start with but we need to protect ourselves with something.

Of course they could do with longer studies but they cost money and at the moment those resources are going into the oral anticoagulants so we just have to be patient and live with what we have. Nothing is perfect.

You are entitled to your opinion but I don't find them helpful.


Oh and I've been on LMW Heparin for almost two years and just had the result of my bone scan. The last one was done over three years ago and there is hardly any change.


Sorry for delay in answering a lot on...

This post doesn't say I've tried Warfarin and still have problems ...

I really don't mean to upset anyone but I read posts/replies on here about Heparin use and it really frightens me - Unfractionated heparin without a doubt causes osteoporosis ...LMW heparin doesn't appear to but has not really been used long term...what is needed is more people to take it for long term - nothing to do with money, more to do with available data ...and also (like you do) to absolutely ensure things like your bone density is monitored...I think that point should be made every time its use is recommended...

Warfarin has it problems but has been around a lot longer - people have now been on it for 20 years+ ...

If Warfarin isn't working for you (you get multiple clots etc on it ) then yes of course you NEED to take LMW Heparin - -or if you decide the (probably small) risk is worth it ...but you should be told the risks..

We have been developing a 'better' anticoagulant than Warfarin for 20+ years now -and we still don't have don't count on only being on LMW heparin for a few years...

I've said before - I watched my grandmother die in the early 80s from osteoporosis - her back literally collapsed -not pleasant to watch never mind happen to you - this was caused by medication - not Heparin - she had been taking for years before this side effect was known and by that stage it was too late for her...

All I am advising is caution ...

(And yes it would be wonderful if there was a cure/better treatment for APS etc ... )


Look I think we all have to read things backwards, forwards, sideways etc etc and then overview.. that is how I myself weight up information and also help others on here. I had three pregnancies on heavy amounts of 'fragmin' due to the amounts of clots I had with my first pregnancy... however my bone density is fine these days.. however.. despite my five conditions... carefuly to receive vitamin D/calcium, excellent diet, and exercise... it is frightful weighing up all the options but to have no blood thinners would be significantly worse.! Mary F xx

There is no doubt that we have to be careful and informed with medication but now there is a drive in the UK towards lack of vitamin D being a culprit.. and also lifestyle, lack of good diet etc etc:

for instance Scotland soon to give out free prescriptions of vitamin D!


I took fragmin for my two pregnancies too ...because that was essential and relatively short term ...

It is the prospect of VERY long term use that makes me a bit uncomfortable ...and I really think that people need to know and make sure they do get bone density checks etc...and take Vit D/Calcium, do exercise etc etc....

I just don't think I'm explaining myself very well!

(And I am obviously very sensitive about it!)



I think we all ask sensible questions about our drugs.. and a forum like this is more than useful. Mary F x


I agree, but would you say that applies to people like me who have not had a DVT/ stroke? I had 3 miscarriages. Do they count as 'clotting incidents'? It's one thing I've been wondering actually - if I wasn't on meds, what would be the risk of me having a DVT or stroke? Not that I want to try and find out, just wondering if for some one who's 'just' had miscarriages, what the risks are.

At the moment, headaches are pretty much ruining my life. They last for a week at a time, make me feel really poorly and I can't function v well at all. It makes looking after my kids v v difficult, never mind anything else. Not looking for pity here, especially as I know some people have it much, much worse, but I'd like to see if heparin could give me a better quality of life and have bone scans to keep an eye on things.


My GP thinks the return of my headaches might be a gabapentin side effect, so I'm coming off them and waiting to see Prof K for other suggestions. Will keep you posted as to what he says.


I agree that we would not be on Heparin if we did not have life threatening illness.

I have been on it for more than 3 years. Bottom line is whatever meditation you take pretty much all of them have side effects. It is a matter of deciding which will do the most damage.

Are you at St. T`s on 3rdMay paleosuze? I am there that day so would be nice to say hello.



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