Heparin and steroids (IVF pregnancy after miscarriage) - when did you stop taking them?

[Chocolatemolehill]

Hello ladies.
I would love to hear your stories and get some advice on the drugs front.
I'm currently 13 weeks pregnant after two miscarriage. It's an IVF pregnancy (5th IVF, done abroad).

From the day of embryo transfer I've been on heparin (tinzaparin actually), steroids (Prednisolone) and progesterone pessaries (600mg a day). I never had any tests done to diagnose clotting or natural killer cells problems. The medication was given to me just in case, as nobody knew why I had previous miscarriages and IVF failures.

The doctor form my ivf clinic told I can now stop all the medication. However, I'm worried to stop it all, just in case I have an undiagnosed underlying problem. Also, as m ivf clinic is abroad the doctor didn't get a chance to examine me, we just talked over the phone.

I've also had some bleeding in this pregnancy 6-9 weeks) and was told I have a subchorionic hematoma. During my 12 week scan I was told the hematoma is still there but at the moment I'm not bleeding.

So my question to those of you who had similar experiences and had been taking these drugs - when did you stop taking them? Did you have any extra tests done to make sure ti's ok to stop medication? Were you ok after stopping the drugs?

I'm so scared, I really want this pregnancy to work. It will be my first baby.

Sorry for such a long post!

Personally, I think it would be best to get some advice from a UK-based consultant to rule out the possibility of a clotting disorder before you eliminate the heparin.
I had 4 IVF miscarriages and am now on a surprise natural pregnancy for which I was given progesterone at 10 weeks because of bleeding -stopped this at around 14 weeks because it should no longer necessary. I was also referred to a haematologist-immunologist because of my previous miscarriages/infertility and a family history of thrombosis and I was immediately prescribed heparin and low-dose aspirin for the duration of my pregnancy. Blood tests confirmed that I have some clotting issues.
Could you talk to your GP about getting a referral? xx

lizziekal - congratulations on your pregnancy!

Did you have the clotting tests done while already pregnant?
I've had a conversation about having tests with my midwife and a consultant endocrinologist and they said that because I only had two rather than three miscarriages they wouldn't probably test me. Rather frustrating that I need to have another miscarriage to tick some clinical box
I'll try to get a referral to a haematologist.
Did you also take any steroids or is it just heparin?

Good luck with your pregnancy -it must be a very happy but also stressful time for you, after all you've been through...

Thanks, now getting on for 23 weeks and starting to feel a bit more positive. It is really hard just to relax and enjoy pregnancy especially when you've had a difficult journey to get there and gone through the heartbreak of miscarriage so I can understand why you're so anxious to do everything you can not to jeopardize this one.
I had some tests done for recurrent miscarriage after the 4th loss, but had already decided not to pursue further treatment (after 4 IUIs and 7 rounds of IVF, I'd quite frankly had enough and was no longer really responding to the stimms) and they never found anything particularly conclusive.
It was only at the booking in appointment for this pregnancy that it was suggested that I should be taking heparin and so got sent straight to a haematologist whose attitude is 'better safe than sorry'. He immediately started me on heparin and aspirin and ordered a whole load of tests for possible clotting issues (and told me off for not going in as soon as I found out I was preggers). This time round it hasn't been suggested that I take steroids- when I took them for the IVF cycles I was always told to phase them out at the end of the first trimester. So can't help you there.
I really would try and push them to get you some testing, at the very least just so you can reassure yourself that you have done everything within your power to make this pregnancy work. xx

I was on a similar empirical package post multiple miscarriages and IVF. Started weaning prednisolone very gently at 12 weeks. Be prepared to feel quite yuck as you do this especially if you've already had morning sickness.

I was too scared to stop the heparin (actually clexane for me). Despite testing neg for all the main genetic clotting disorders my IVF consultant had said it was worth staying on due to family history of pregnancy related DVTs and multiple miscarriages. My sister who had the DVT while preg also tested neg for all the main clotting issues. It gets a bit awkward around 2nd trimester as GP often not happy to prescribe empirically and most IVF clinics will only prescribe 1st trimester drugs. I was lucky and got referred to a great haematology team at UCH by my midwife. They advised to stay on heparin (changed to Fragmin) and aspirin until 38 weeks as they argued there are lots of strange clotting issues that we just don't have names or tests for yet.

Your situation might be a bit different as you've had the haematoma. Good luck with everything. Pregnancy is nerve wracking enough without a long tricky history and worrying which drugs have made the difference this time around. Hope it all continues to go well for you x

I was on clexane, progesterone and prednisolone after 4MCs, with no clotting problem but high NK cells. I weaned off the steroids from 10-12 weeks and stopped the clexane and progesterone at 12 weeks. Now 15 weeks.....
AFAIK you shouldn't be taking steroids in 2nd trimester as it can interfere with baby's sex hormone development. You need to wean off them though, not stop suddenly. It should be safe to stop progesterone as placenta should now have taken over maintaining the pregnancy. Whether you need heparin depends on whether you have a clotting issue (in which case you need it until partway through third trimester) or whether it was just for it's protective effect on placental cells. I would think the heparin would make a bleed from a haematoma more likely, since it inhibits clotting. I had SCH at my 8 week scan and was told to do as little as possible, but it seemed to be reabsorbed by 10 weeks.
I hope it all continues to go well, it is pretty nerve wracking coming off the meds in case they are all that is shoring up the pregnancy.

Thank you so much for your advice and sharing your stories with me.
I'd definitely rather keep taking the tinzaparin injections through the whole pregnancy than have something go wrong.

BettyBi0 - I'm at UCH too so I'll try to get the referral and continue with the injections until then. Good to hear that you think the haematology team are great!

Good luck with your pregnancies ladies! It's completely nerve wrecking but I'm sure it's all worth it! :-)

Yes I had many miscarriages and failed IVFs then was diagnosed with immune clotting issues. Don't stop the meds, go see Dr Gorgy in London first. He treats immunology/clotting issues that cause miscarriage. Since this time worked, you might need these drugs.

I forgot to say that I will be on enoxaparin (heparin) + baby aspirin for duration of my pregnancy

Thank you! I'll continue with the injections until I can be properly diagnosed.