Women with blood clotting disorders - Page 5 - Mothering Forums
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#121 of 610 Old 05-09-2006, 02:08 PM
 
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Didi - that's pants! Do you need any research to back up your claim? I'm sure I've got something somewhere that would be relevant if your doc wants it.

Everyone here complains about our relatively high taxes on salaries as well as National Insurance but at least I don't have to worry about the cost of this stuff whilst I'm pregnant nor how much the birth will cost.

Crossing my fingers for you
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#122 of 610 Old 05-11-2006, 08:49 AM
 
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Thanks, Orange, but it's not the doc that's the problem, it's the insurance company. I work at a different insurance company and I think I'll call our pharmacy dept today and see what *we* consider a sufficient diagnosis for authorization.

I went ahead and bought 1 box out of pocket last night, and if I don't hear back from my doc this morning I'm going to go ahead and order from Canada (it's 1/3 of the price!). Dh and I talked about it, and since we have the money in the bank, we're not going to let this stop us from having another baby. I mean, we were talking about adopting, which costs 25k - so why would we let $3500 worth of meds stop us from having another biological child?

Took my first shot last night. They've changed the syringes in the last 4 years - they didn't have the safety mechanism before, and maybe I'm wrong, but I think the needle gauge is smaller (not that I'm complaining).
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#123 of 610 Old 05-11-2006, 12:17 PM
 
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Kind of resolution: Blue Cross will pay for it, but not until I get a BFP. Doesn't matter that I miscarry at 5 or 6 weeks and I need it before I ovulate. Grrrrr.

I went ahead and ordered a month's supply from Canada - it'll cost me the same as one box of 10 syringes cost here.
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#124 of 610 Old 05-11-2006, 03:05 PM
 
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whatever, have you thought of just going with standard heparin for the post ovulation phase--it's WAY cheaper, especially if you don't get pregnant right away--your drug company may even cover that.
For what it's worth, I've had 2 hemos tell me that for APA, being on baby aspirin for a minimum of 2 mos prior to conceiving is more important than anything.
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#125 of 610 Old 05-11-2006, 03:15 PM
 
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My last doc had me on heparin pre- BFP, but my new one is anti-heparin and only prescribes Lovenox. I've been on aspirin on-and-off (mostly on lately) ever since I was diagnosed, and I just had a PT/PTT done that was normal, so I think I should be ok. The money sucks, but we can afford it so I can't really complain. It's worth it in the long run.
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#126 of 610 Old 05-11-2006, 03:36 PM
 
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ERicaJo, I have VonWillebrans also. I'm pretty sure that my mom has it too. I bruise very easily and hemorraged with almost all of my deliveries. I've always had heavy cycles and am happy to manage them with bc.

Rivka, mommy to 3 big boys and a set of b/g twins
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#127 of 610 Old 05-11-2006, 03:49 PM
 
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Quote:
Originally Posted by whateverdidiwants
I'm still fighting with Blue Cross to get my Lovenox covered. I'm REALLY ticked off because when I spoke to them on Friday they said that they had all the paperwork they needed. Today they're saying that a dx of just APA isn't sufficient.

Today is cd 13 and I should be ovulating Monday - I should be starting the shots TODAY. I've already started pricing local pharmacies, and worst case scenario I'll have to pay for a box full price tomorrow ( at $308 - faints), and then order from Canada where it's a third of the price.

My doc has a call in to the Medical Director of Blue Cross to appeal. Everyone cross their fingers for me.
We have Anthem as well and I had NO problems whatsoever getting my Lovenox covered w/Grace's pregnancy. I called beforehand b/c I had no idea what it would cost and I wanted to make sure they covered it. The CSR said that my copay would be $30 (most expensive copay on our plan). I didn't realize that a 1 mo. supply was almost $4,000! Obviously, I was more than obliged to pay the $30.

May I ask why you need the Lovenox while you're O'ing? I didn't read the rest of your posts so I'm sorry if you've explained it already.

, , , mama to Ross , Reagan (8/29/05), Joshua (from Haiti...here NOW due to the earthquake!), and Elijah , born safely 9-8-09.
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#128 of 610 Old 05-11-2006, 05:49 PM
 
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Hi! I also switched from lovenox to heparin after paying $600 for a week's supply. My doctor claims that there is no big difference, well there is a difference but in her opinion the difference does not worth 2000 a month. Anyway, I was looking all over the posts and found that most of women use calcium supplement while on heparin. I asked my doctor and she said that with my dose 5000units 2 times a day she whould not worry too much about calcium, but I can use tums or any other calcium supplement. Well, i do not like the taste of tums, so I was wandering what calcium supplements you were using during pregnancy? What is the right dose? I am on prenatal vitamins already.
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#129 of 610 Old 05-11-2006, 05:57 PM
 
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Originally Posted by 5thAttempt
My doctor claims that there is no big difference, well there is a difference but in her opinion the difference does not worth 2000 a month.
Lovenox is more potent, thus a longer half-life than Heparin, but you're right, the $$ is the biggest difference. The doctors at the Maternal Fetal Medicine Clinic at IU prefer Lovenox over Heparin but they realize not everyone (and their insurance plans) can swing the almost $4,000/mo. for Lovenox.

, , , mama to Ross , Reagan (8/29/05), Joshua (from Haiti...here NOW due to the earthquake!), and Elijah , born safely 9-8-09.
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#130 of 610 Old 05-12-2006, 07:01 AM
 
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In the UK where we don't pay directly for our meds as I said already there is nearly zero prescribing of straight unfractionated heparin. Nine years ago I had UFH after the birth of ds2 but was given Fragmin when I was discharged from hospital to inject at home. UFH is not considered safe for home treatment here.

The benefits of LMWH over UFH are several and begin with more predictable effect, better absorbtion, less bone decalcification and less incidence of bleeding. I can't put my finger on any research just now but if you google you will find stacks of it.

I can totally understand cost being a factor and injecting UFH is 1000 times better than injecting nothing at all but your doc is not being totally straight by saying that cost is the only difference.
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#131 of 610 Old 05-12-2006, 12:59 PM
 
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Well, at this point am I not debating lovenox vs heparin anymore (unless we will switch to new insurance in a month or so). I am questioning what other calcium supplements I should use in addition to my prenatal vitamins and what will be needed amount. Can I just go to to pharmacy and and by calcuim over the counter? Anyone better than the other? I was postponing this decision since I was not sure if this pregnancy will stick or not. It looks like it might stay, so now I need to take care of long term effects. Any suggestions about calcium/dosage?

whateverdidiwants, I am not sure where you live but when I was researching lovenox prices I discovered that they are different at diffrent pharmacies. In my area Osco drugs had them twice as cheaper than walgreens. It was still expensive - 2K vs 4K for a month - but if you decided that you will stick with it - you might want to check around.
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#132 of 610 Old 05-12-2006, 01:57 PM
 
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5thattempt - I didn't do extra calcium other than fortified juice. I eat a vegan diet high in calcium via leafy green veggies and broccoli so I didn't sweat it.

I called around to all the local pharmacies (I'm in South Florida) and the cheapest I found it was $308 a box. I just ordered a month's supply from Canada at $350 for 30 shots. Hopefully, I'll get a BFP this month and then insurance will pick up the rest.
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#133 of 610 Old 05-12-2006, 02:02 PM
 
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I have fairly severe ITP, ( Chronic Adult idiopathicthrombocytopenia) I have had it for a looonnnnnggg time. I am closely monitored throughout my pregnancies. I get IV infused platelets sometimes, and globulin therapy when they get low.

I am TTC #3, and also on therapy for a number of infertility issues.
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#134 of 610 Old 05-14-2006, 03:57 AM
 
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I have Protein S & C deficiencies, Lupus Anticoagulant, MTHFR mutation.

Isaiah was stillborn at 33 weeks due to complete placental abruption and I almost died too. I've also had many miscarriages.

I'm now on 81 mg aspirin 1x/day and I take prenatal vitamins and folic acid. I will be on the aspirin and folic acid my whole life and the prenatals my whole reproductive life. Fine by me, they're good for me.
During pregnancy i'm on all of that, plus Heparin the entire time 2x/day. I was put on Lovenox for 6 weeks after Elliana was born. I was also on Aldomet for blood pressure, and some other medications. I'm on seizure meds as well.
We had weekly dr. visits with ultrasounds being done every 2 weeks , then they went to 3 times a week with NST's and Amniotic Fluid Index's and Biophysical Profile's being done.
I was also on bedrest for many different reasons. She started trying to come out at 26 weeks lol. Heck, I was 5cm when they induced me!

Elliana was induced at 35 weeks because of the risk to her health as well as mine. She had to be on the ventilator and needed surfactant when she was born, but i'm still very glad we were induced. I wore Anti-embolism stockings while I was in the hospital with her. I hate that she needed all of that stuff, but the pros outweighed the cons in our situation. She is indeed our miracle.
I have other health issues as well that tie into everything.

I see a new hemotologist in September. He will be treating me and he will be testing Elliana.

I'm still covered in bruises and knots.
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#135 of 610 Old 05-14-2006, 01:41 PM
 
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Isaiahsmommy,
I'm just amazed! Wow..thats alot to go through. I'm so sorry about your little boy, thats so sad. Your dd is adoreable, and you looked so happy in your pictures. Our babies really are miracles.
I'm just amazed by all of you ladies on here. You are so strong , much stronger than I! Like I said earlier, as tough as it was for me, I never worried about dying. I feel very lucky, I only have factor V leiden, and I only have to worry about LMWH if/when we decide to have another baby(thats put on hold again )
Happy Mothers Day Ladies! You deserve it

waiting on the power of the three wolf moon. 
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#136 of 610 Old 06-07-2006, 06:42 PM
 
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Hi all,

I had a question regarding some earlier posts about MTHFR and induction, which I just found thanks to Google.

I'm currently 18 weeks pregnant (due 11/7). I was diagnosed with MTHFR C677T homozygous mutation after two prior miscarriages. I'm currently on Lovenox and this time around, things seem to be going well. However, my perinatologist told me that even though they plan to switch me to regular heparin at 36 weeks, they then want to induce around 39. The more I think about it and read about it, the less I want to be induced if I can help it (barring other complications, of course). I am not really clear on why he thinks induction is necessary, and plan to discuss it with him further. (I haven't had a chance to see him since before this pregnancy, when I was originally diagnosed.) According to my OB, this is just sort of a standard thing they do when you are in the "high-risk" category. I've been doing some searching to try to find out if this is really a standard and if so why, specifically, but I haven't found much.

So, my question.. has anyone else been told this, and if so, what reasons were you given? Also, does anyone know a perinatologist in the Austin, TX area that they would recommend that does not subscribe to this line of thinking? I liked mine otherwise, but if this becomes a big issue I may need to seek a second opinion. Any advice would be much appreciated!
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#137 of 610 Old 06-07-2006, 07:15 PM
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Just found out I have both Factor II and Factor V. I'm finished having babies, though. (I had two perfectly normal pregnancies, thank god.)

"Our task is not to see the future, but to enable it."
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#138 of 610 Old 06-08-2006, 03:31 PM
 
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About induction-

From what I can gather induction is planned so as to control the dosing of medication around the time of labour to ensure that epidural or spinal pain relief is a safe option.

This seems more common in the US (from what I read on other boards) than here in the UK where this has not been suggested to me as an option.

You may find some docs who are concerned about an increased risk of late loss and more problems with placental function in late pregnancy but from my extensive reading over the past few years this seems to only be a serious risk in unmedicated pregnancies. The research making the link between thrombophilias and late loss are all reviews which find symptoms first then match these to a later diagnosis of MTHFR or PSD of FVL etc. Unfortunately this is the way that many women find that they have a clotting disorder: they suffer recurrent loss or a stillbirth and it is only then that they are tested for any problem.

The data available for treated pregnacies in previously diagnosed mothers show that loss of any kind is extremely rare as are secondary complications.

If you can convince your OB that you will not need an epi then he will have to come up with another reason for induction. If he is concerned about problems then you can request weekly monitoring, NSTs and bio-physical stuff to reassure you both - which I understand can unfortunately be used to provide info you don't need see http://www.midwiferytoday.com/articles/biophysical.asp or you can just say that is your decision and you don't want to to be induced thank you or "Thank you (Mr Hi-an-mi-tee) for your advice I/We will consider it carefully and let you know what we decide" (Quote from the infamous midwife Mark Cronk here in the UK.)

I know that sometimes women with clotting disorders do need to be induced or have a c section but I really cannot understand why these thigs are suggested as routine when OBs should know that both processes are known to increase our risk of clotting problems post-natally. I cannot imagine any doctor suggesting un-necessary surgery to anyone with a clotting disorder in any other situation so why this one?

a bit ranty - sorry
Rachel
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#139 of 610 Old 06-08-2006, 06:12 PM
 
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Question

I am 11.5 w pregnant and taking heparin 5000 units twice a day for protein S deficiency. It was prescribed to me by fertility specialist. Then I was transferred to the regular OB. Well, last time I saw my OB he hinted me that he might stop heparin after 1st trimester. (risk/benefit consideration, he said that after 1st trimester placenta is more capable of functioning w/o blood thinners and it is more critical to take them at the beginning). I will be seeing high -risk doctor who will advise him on the subject. I never had blood clot and was on birth coltrol pills for many years. Anyway, it is still in the air. As much as I hate doing the shots I am terrifying at stopping them.
I had molar pregnancy, then my son almost 9 years ago and 4 m/c in a row during the last 3 years. Any thoughts? Any one else stopped taking heparin/lovenox after 1st trimester? He said that I should continue aspirin till the end of pregnancy.
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#140 of 610 Old 06-09-2006, 12:58 AM
 
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Hi there,
I am new to this thread. I have FVL hetero, diagnosed after a second trimester miscarriage (apparent partial abruption that tried to heal itself) and an early m/c. One healthy son pre-diagnosis, and one after (now 6 and 3).

I would LOVE to read the studies you mention below. We are still debating trying for another, and I know there is more research done and quite possibly treatments have changed. And I'm 3.5 years older!

Thank you!

Quote:
Originally Posted by orangefoot
About induction-

The data available for treated pregnacies in previously diagnosed mothers show that loss of any kind is extremely rare as are secondary complications.
a bit ranty - sorry
Rachel
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#141 of 610 Old 06-09-2006, 08:38 AM
 
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#142 of 610 Old 06-10-2006, 10:29 PM
 
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I'm new here, tho have been lurking for a while. I have a 4.5 yr old son who was conceived with no difficulty -- it was an easy pregnancy and delivery, too. When we started ttc again I had 2 mc's in a row at 35 and 31 days. I went for blood tests and have tested positive for several acquired and inherited thrombophilic factors. Apparently I'm not at risk for clotting normally, only while pg.

Earlier this year I got pg again. My perinatologist started me on progesterone suppositories and 40mg lovenox once/day just after the positive pg test. But at a checkup at 6.5 wks there was no heartbeat, another mc. My OB did a d&c to see if she could recover tissue for testing, but the test was inconclusive.

Now I'm on day 2 of the cycle in which we can try again, and I'm seriously waffling. My perinatologist said he'd up me to 40mg lovenox 2x/day, which just seems like so much to me! And frankly I'm terrified of having a mc even later -- though it saddens me to have had 3 mc's at least they were early.

I guess thrombophilic issues can arise at any time, but I even though it's been 6 mos since my first blood tests I still can't wrap my head around the fact that I had a totally textbook pg with my son, and now this. It just seems so weird to have all of these clotting issues that are so bad in pg but they are not dangerous to me when I'm not pg? I guess I still haven't come to terms with it all yet. I'd hoped for a homebirth with our second child and can't quite believe that I am suddenly a high risk pregnancy.

Thanks for reading -- I'm looking forward to learning more from all of you.
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#143 of 610 Old 06-10-2006, 10:45 PM
 
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Unfortuantely it's VERY common for clotting issues to get worse as you age. Even genetic disorders that you could have been tested positive for years ago, will often manifest in your 30's or later.
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#144 of 610 Old 06-11-2006, 02:49 PM
 
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I had 4 m/c in a row for the last 3 years. I had my son 9 years ago without any issues. After m/c #4 I was diagnozed with Protein S deficiency. I am currently on heparin and 12 weeks pregnant. However no one was sure that PSD is the root of the problem. I just turned 36.
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#145 of 610 Old 06-11-2006, 06:42 PM
 
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Thanks for these. It will take me awhile to get through them. Between the kids and the terminology I'll do my best.


[QUOTE=orangefoot]This is the most recent review http://www.bloodjournal.org/cgi/content/full/106/2/401
which, if you can get through the blurb shows
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#146 of 610 Old 06-11-2006, 09:38 PM
 
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Sigh, I'd suspected the age thing had something to do with it. I just turned 37. I was 31 when I conceived my son, and had just turned 35 when we started ttc #2. Who knew what a difference 4 yrs could make?
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#147 of 610 Old 06-12-2006, 08:23 AM
 
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Age does seem to make a difference but its just a case of your luck running out without realising it I think.

I got through my twenties with PSD on and off transatlantic flights, taking the pill, having two children then I got a DVT out of the blue when I was just shy of 30. Onset of problems for PSD is around 50% by the late 20s (I think) so every year you go past that you are moving into the unknown.

Most clotting problems are amplified by pregnancy and not necessarily 'harmless' when not pregnant. The thing is that they become more obvious during pregnancy especially if you suffer a loss and this is a trigger for testing. Some people do not suffer m/c but do develop DVT while pregnant.

5th Attempt - Hopefully PSD is the cause of the problem and if it is then the heparin will really make a difference - don't let them take you off it the risk benefit is waaaay in favour of continuing treatment. Tell them that you know that your risk of clotting is increased with pregnancy and you would rather continue treatment than suffer a DVT or later problems with clots in the cord or placenta. Print off the whole of the first article I posted last and get them to read it. OBs are not experts in blood clotting by definition, no matter what they might think. Wishing you a healthy pregnancy

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#148 of 610 Old 06-15-2006, 11:40 AM
 
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Thanks for all the insight, ladies. After a long talk DH and I decided we will wait another 2 cycles to try again. I've just started a 1 yr graduate program and the timing will be better if we wait. Part of me feels hesitant to wait at all, since who knows what can happen in even two months? I wish more was known about all of these issues -- it's so frustrating to have no clear reasons why these thrombophilic factors developed. Makes it really hard to plan for anything.
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#149 of 610 Old 06-15-2006, 11:52 AM
 
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Just a little update: I saw peri and he said that I have to use blood thinner for the rest of pregnancy. Now I have to decide if I wan to switch to Lovenox or stay or heparin (my new insurance will cover lovennox and old insurance was a reason for me to use heparin). I already switched once after a week of usage of lovenox. My dh said: why fix something if it is working? For those why used both: are the briusing the same or is it better with one over the other? Also, I can not get a sence of security with my OB: now he said that may be he get me off all meds 2 weeks before the delivery. Peri said that I have to switch to heparin at 36 weeks if I choose to use lovenox now. My OB's point: why complicate thing if I really never had any issues. Becides, my undestanding that Protein S deficiency usually come together with other clotting issues and thus non-usage of blood thinners is not an option, but I do not have others. Any commenets on both issues: switchng to lovenox from heparin at 12 weeks (where I am now) and usage at the end of pregnancy? Thanks.
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#150 of 610 Old 06-15-2006, 01:07 PM
 
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I'm not certain of your past and whether you've had any live children or not but just because you haven't had any issues so far doesn't mean you won't have any issues in the future. Personally I'd NOT come off for 2 whole weeks before delivery, this is when the risks are greatest--lots of people have completely healthy pregnancies and then end up with a still birth that is later traced back to untreated clotting disorders.
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