When to start heparin/clexane?

[Bottleoffish]

Ok, so I got my BFP this morning and will see my GP in the next few days. I have Hughes Syndrome, a clotting/autoimmune disorder, which means I need cleaned in pregnancy due to the risk of clots.

In my last pregnancy I lived somewhere else and the haematologist there wanted me on 75mg aspirin whilst TTC and clexane from my BFP. This was successful and DD is now 18 months.

I have seen the haematologist where I live now and she said the procedure here is that I will be referred to the midwife by my GP, the midwife will then refer me to the joint obstetric/haematology clinic for booking at 7-8 weeks, where they will scan me and if the pregnancy is viable they will start me on aspirin and clexane.

I can't help but worry as this is different to what was successful for me before and I am not sure I have faith in the haematologist I have seen here as she initially said I didn't need anti coagulation for life, despite previous clots in my lungs and also told me I didn't need anticoagulation for a long haul flight, as flights were low risk anyway. Then last time I saw her she said once I have had this baby I will need to go on warfarin for life, due to my blood results.

I told the haematologist I wanted to TTC on asprin and she said she wouldnt discourage me from taking it, so I have been, and like before, fot pregnant my first cycle of taking asprin.

So, would anyone else please mind sharing when they started heparin/clexane to reassure me? I am worried not taking heparin from now will mean I lose this baby.

Anyone?

Hi, didn't want to read and run, although I don't know if I can help. I'm on Clexane in this pregnancy, following a DVT which turned into multiple massive pe last year. My gp put me on it straight away, although no aspirin or anything while ttc. I've no condition or anything, my DVT was caused by a number of risk factors coming together.

Can you ask to see a different anti coagulation team? I'm surprised yours is being so blasé? Also seems odd to wait until the pregnancy is 'viable'?

Does your condition increase the likelihood of a clot in pregnancy?

I'm in a slightly different boat as first baby was ivf, but took it from pre pregnancy with that one, and with this spontaneous one, I took the spares I had, starting from the positive test and then went privately to get a prescription. I knew I would have a nightmare with the nhs. I am 14 weeks and only got into the anticoagulation clinic today! So thank goodness I had the ability to get my own first.

I don't know what to suggest for you. Doesn't sound great to me. I cannot understand why women with clear problems aren't allowed to see any consultants until they're nearly out of the first trimester. Grr.

I would take it as early as you can get it. I managed to get the GP to prescribe it. It was a bit of a fight but I had major problems getting to see a consultant with DD2, after getting an immediate referral with DD1. I also cannot understand why they are being blase. Can you go back to your GP and demand it? Have you anything in writing which shows you need it? I sympathise. I had a PE after having DD2 despite the clexane. Hope all woks out ok.

GPs hate being asked to prescribe clexane because of the cost and the variable commissioning rules. You need a speedy referral to a haematologist who is used to looking after obstetric patients.
Where do you live?

Have a look on the LifeBlood website. Their patron is Prof. Beverly Hunt; she is an expert on this.

Graham Hughes is retired form the NHS but still sees patients privately at his London Bridge clinic. (Obviously he is the expert, and a very nice man).

IMO you should be on clexane asap.

Ok, I have have spoken to the GP and just said I had been on clexane from my positive test with my DD and was at high risk of clots/miscarriage. She didn't even argue, she said I could go in for a blood test to check platelets tomorrow (never had this before, do you really need it? ) and if I took one of my in date cleaner syringes in the nurse would give it as a refresher and then I could continue myself. She will also leave a prescription for me for more clexane.

I am tempted to give myself one today, but they'd know from the blood test, wouldn't they? Also, no way I am letting the nurse inject me with huge clexane needle tomorrow, I'll just do it myself so she knows I'm capable....

Oh that's good. At least you're getting the medication which will keep you safe. I didn't need a platelet test - maybe this is something to do with your condition?

They just want to check you have adequate platelets before reducing your clotting capabilities, that's all. your condition shouldn't affect your platelet levels, but it would be criminally negligent of them to not know your platelet leves, just in case they were low for some reason, before starting you on anti-coagulants.

I took Clexane for FVLeiden thrombophilia in both my pgs - DS1 from 16w, DS2 from getting the positive test result.

The haematologist you spoke to first needs her/his head read, IMO.

I found the nurse gave me the least painful of the clexane injections that I had, if it's an anti-coag nurse then they're pretty good at it (if general nurse then maybe not so much)

Are you still on the aspirin? If so, don't give yourself a clexane jab today - it wouldn't show up in the blood test tomorrow anyway, tbh, as it's doubtful they will be checking the appropriate clotting mechanism in your tests.

Oh, and platelet counts are done as part of the routine full blood count, not separately - and you usually get that done as part of your routine bloods in pregnancy anyway. :)

Thank you. Gosh, they definitely didn't check platelet levels before, just prescribed the clexane after confirming I should with the haematologist by fax.

Yes, I am still on aspirin, 75mg daily. I think it is just a general nurse I will see tomorrow, but I'm a bit wimp about injections, despite having had a ridiculous amount of blood tests and injections and I just feel better injecting myself with the clexane. DH was desperate for a go last time.

I'm a bit about the haematologist tbh. I really trusted the one I saw at my previous hospital and other staff there made it obvious that she was known for her super efficiency.

Were you on aspirin before though? I mean in your last pg? Aspirin can affect platelets, it's how its anticoagulant properties work.

Yes, I don't like the sound of your haematologist at all. Far too risky, IMO. I didn't like the one I saw here in my 2nd pg either - I drove my anti-coagulation because I knew what had been done before, and my obgyn was happy to go along with me because of my background (haematology and blood transfusion) - so we ignored the haematologist saying "oh you could have come off the clexane at 12w if you'd wanted to" - yeah right, fuck off with that idea!

Yes, I was on aspirin whilst TTC last time too, which is why I wanted to take it this time, despite the haematologist saying I didn't need to. I did tell her I was going to and she said she wouldn't discourage it if that was what I wanted to do. This time and last time I didn't get pregnant until on aspirin and then got pregnant first cycle on it both times. That may be a coincidence of course.

Also you can get a heparin induced thrombocytopenia - where the platelets numbers fall with drugs like clexane - so it can be important to know a baseline and monitor this.

3littlefrogs - This, amongst others I suspect isn't why GPs 'hate prescribing' purely because of money/arbitrary rules - it's a specialist drug that isn't entirely risk free (like every other drug then ) & needs a clear specialist plan for initiation/monitoring & importantly when to stop.

Agree Morgan. But I wish everyone would get their act together, follow the national protocols and guidelines and that the hospitals would stop telling the patients that the GP has to prescribe clexane when the poor old GP cannot do it.

The poor patient is left in the middle, unable to get the medication they need, and feeling unsupported by anybody.

Of course, long term need for LMWH should be managed by a consultant, and, at the moment, in many areas that has to include prescribing, because of the commissioning rules/policies. I believe in some areas of the country the GPs are able to prescribe, but that should be in close partnership with the specialist managing the patient.

At present it is all a muddle because of different areas all doing their own thing and making their own rules. I suppose it is no different from the different prescribing rules for other expensive drugs.