Is it worth me asking for a trial of heparin?

[Paleosooze]

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.

[Manofmendip]

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

My head is much clearer on it than on Warfarin.

Best wishes.

Dave

[Paleosooze in reply to Manofmendip]

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

[Manofmendip]

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

[Salty]

Yes!!!! Ask.

[Lucky67]

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

[Paleosooze]

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

[Coppernob]

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.

[Paleosooze]

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.

[Lucky67]

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

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.

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.

[Paleosooze]

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.

[Paleosooze]

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.

[SueLovett]

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.

X

[Lucky67]

Sorry for delay in answering ...got 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 one...so 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 ... )

[MaryF Administrator in reply to Lucky67]

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: ncbi.nlm.nih.gov/pubmed/169...

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

[Lucky67 in reply to MaryF]

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!)

Sorry!

[MaryF Administrator in reply to Lucky67]

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