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» Hatrack River Forum » Active Forums » Books, Films, Food and Culture » Pregnancy with Protein C Deficiency

   
Author Topic: Pregnancy with Protein C Deficiency
RivalOfTheRose
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My wife and I are thinking about trying to extend our family through the time-honored tradition of making a baby.

My wife's sister found out she had a protein C deficiency, so my wife got tested too. Unfortunately she tested positive. Average scores are in the 60-70 range, and my wife got a 49.

This problem can cause blood clots during the 2nd trimester, which might travel to the fetus and block blood flow, killing the fetus.

The hematologist didn't seem to think that it is a big concern, and thinks that we should try for a natural pregnancy.

To counter this, we could try blood-thinning Lovenox treatment during the entire pregnancy. Aside from any cost, this would require daily injections of the medicine into my poor wife.

Our question: How does the cost and stress of these possibly unneeded injections compare to the possibility of a miscarriage?

We are having trouble coming up with what is best for us, so hopefully you guys can add some insight and experience to our situation.

We are deeply thankful of any help we get!

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Stone_Wolf_
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If your wife had the shots and stabilized her protein C level before she got pregnant, would she still need to get daily injections while pregnant? Pregnancy can be a pain, so smoothing the road a bit is likely worth it.
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Orincoro
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Your hematologist told you not to worry about it. I'd not worry about it. There are too many things to worry about already, and you don't need to hold on to things yourndoctor has dismissed as concerns.
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Belle
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Unfortunately this is not an area where I feel comfortable giving you advice. Your best bet is to talk to your hematologist some more and talk to your ob/gyn. Make sure the hematologist and ob/gyn also talk to each other.

Then make an informed decision. Daily injections, by the way, are painful and irritating but you quickly grow used to them. I had to have quite a few injections during chemo and I was terrified of needles, but eventually it didn't bother me at all. I understand wanting to reduce stress on your wife, but a daily injection if it gives her peace of mind might be a fair trade. It depends on how anxious she will be about the possibility of blood clots. So, again, I can't offer much help but I wish you both luck!

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Wingracer
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I know nothing about it, so I did some reading online. I found a couple studies that showed no statistically significant increase in stillbirth rates.

Also, is there a history of blood clot problems in her family's history? It sounds like many families with this condition show no symptoms throughout their lifetime, while others are plagued with problems.

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RivalOfTheRose
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Her sister developed a bloodclot after a long plane ride. She was also on the pill, which acts as a coagulant. This is what led her and respectively us to get tested.
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Jhai
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I have to take Coumadin daily for a blood-clotting disorder & history of clotting (not Protein C Deficiency, though - Factor V Leiden and a couple of minor ones), and would have to go on Lovenox if I ever wanted to get pregnant.

I've been on Lovenox a couple of times when I've gotten a clot and needed to get my clotting factor changed quickly. As a daily injection, it's not fun, but it's not the end of the world. I've mostly injected on the belly/thigh region. There's the prick, a sharp stinging sensation as you inject, and then it stings/burns a bit for maybe five to ten minutes more. And you get a nice red dot and/or some bruising that takes about a week to fade. It's a rather expensive medicine without insurance... I want to say $2,000 a month for daily injections?

If you haven't found it yet, the Thrombophilia Awareness Project has some excellent information as well as personal stories

Feel free to ask me any questions about clotting if it'll help with your decision-making process, but I don't know anything about your wife's particular disorder. Personally, I'd probably go with your hematologist's suggestion to try for a natural pregnancy at first, but it all depends on what your feelings are towards this particular sort of risk.

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Samprimary
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quote:
It's a rather expensive medicine without insurance... I want to say $2,000 a month for daily injections?
urk
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rivka
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Yeah, that's way, way lowballing the actual cost.
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Mucus
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Lowball?
Eek

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rivka
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I take that back. Either I'm misremembering from the relative who was on them, or the cost is down -- I'm finding estimates of $1800-2200 a month, so $2000 is right on target.
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The Rabbit
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Miscarriages are very common (15-20% of all pregnancies). They are so common that doctors don't generally even look for a cause unless you've had more than one.

Presuming you relatively young, I'd follow the doctors advice and try it without the injections. It seems rather extreme to do the expensive daily injections unless she's already had a miscarriage.

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DSH
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Rabbit, my wife had three miscarriages (they were her first, third and fifth pregnancies) and her OB never felt the need to investigate. They also occurred pretty early, I think around 8 weeks.
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The Rabbit
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DSH, That's not at all surprising. My grandmother had 5 children and 5 miscarriages. I think the fact that your wife had successful pregnancies in between the miscarriages likely contributed to the OBs decision not to investigate. The women I know who've had tests relating to miscarriages had never had a full term pregnancy and had two or more miscarriages in a row.
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Anna
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You should discuss it with a doctor in any case, but you should know that lovenox is not the only possible treatment in case your wife's protein c deficiency prevents her to carry a healthy pregnancy. Low dose aspirin is another option, for example, far less expensive and to be taken by mouth. Then again, you shouldn't take this decision on your own, if only because you need to know when to stop the treatment unless it becomes dangerous when your wife gives birth.
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Alucard...
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Lovenox is actually dosed on body weight, however this can only be tricky in morbidly obese patients whose body weight or Body Mass Index push them over the highest commercial dose available: 150mg. The upper reaches of dosing (150mg) can be much more expensive than the lower doses, (for example: 40mg). However, the med did have an approved generic come to market within the last year, and interestingly enough, the most common generic brand available is made by the same company that manufactured the "Name Brand" version as well.

Lovenox is a low-molecular weight derivation of heparin, another potent anticoag med commonly used in the past in injectible and IV form. Due to tolerability, many patients are discharged on Lovenox therapy for the short-term and later, if required, switched to oral Coumadin therapy. However, in your case this is not part of protocol [Frown]

The best advice I could offer you from a pharmacy perspective is to further research how necessary daily Lovenox therapy would be during the 2nd trimester, and get a second opinion on whether to initiate Lovenox therapy during the 2nd trimester. Three months of painful, bruising injections once or twice a day would be so very costly and daunting. Being on the dispensing end, I would be hard-pressed to see my wife undergo such a course of treatment, but if necessary, having a healthy child would be well worth it. I wish you well in your endeavors and hope you get it all sorted out.

S

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