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If you had cholestasis...

post #1 of 17
Thread Starter 
If you were diagnosed with cholestasis during pregnancy, did this cause you to deliver early? Or just monitored closely the rest of the pregnancy? Also, what did you use, topically, for the itching? I haven't been diagnosed yet (and hopefully won't be!) but am being tested for it this week and want to know what to expect as far as delivery options. I certainly have the itching on hands & feet (and now pretty much everywhere), but hoping it's just a side effect from the increased estrogen/stretching of skin/dry heat, etc. We'll see...
post #2 of 17
I was put on meds as soon as the liver enzyme results came in - it wasn't long before the itching stopped. I didn't use anything special topically - whatever moisturizer was on hand. As long as I wasn't itching, they didn't bother retesting. I delivered early due to other complications, but the choleostasis would not have caused me to deliver earlier given that the medication had it under control. However, with triplets, my doctor wouldn't have let me get past 36 weeks anyway.
post #3 of 17
I had the meds, and the itching stopped somewhat but not completely. I was not retested before birth, but when I was 36 weeks along, I started itching like MAD again, and my OB, who had been cautiously discussing with me the possibility of delivering at 38 weeks, became worried and proposed 37 weeks instead. I had a scheduled C at 37 weeks. (It was a C-section because I would have been a VBAC candidate, and nobody was willing to attend an induced twin VBAC with a mama with a heart condition, and plus DS was transverse. Normally, I would have been offered induction.) Anyway, at the time I did my research, the evidence was pretty strong on delivery by 36 to 37 weeks for cholestasis. I haven't looked at anything that's come out in the last few years, though. My twins are almost 3 now.

I was retested after birth, just to be sure the levels were normalizing. They were. The itching vanished almost like magic, within a few hours of birth.

For the itching, I found some relief with Sarna lotion, and with cold packs. Nothing perfect, but it helped. The real relief came from the Vistaril my OB prescribed-- not for the itch, but to make me drowsy enough that I could get some sleep despite the itch. I hadn't been sleeping because of the itch, and was quite literally threatening suicide, and going a little crazy in general for lack of sleep.
post #4 of 17
a friend of mine had it with all three of her pg, and all three of her LOs were scheduled csecs early, the last was maybe 35-36 wks and was only about 4-5 lbs and had a rough start
post #5 of 17
I'm neither a twin mum, nor a mum who's had cholestasis. However, I know of someone who lost twins to this and have friends who's babies were fine (in the end), but were delivered early.

So it's ended up being something I've read up a fair bit on and when I saw read, I mean the original research papers when I could access them, or reviews of the literature otherwise.

I'm speaking from memory now, but I don't recall anything that even vague conclusions could be drawm from regarding multiple pregnancies, most studies of were smallish anyway and with multiples being more likely to be born early for other reasons, that my result in less poor outcomes if nothing was done.

The interuterine death rate seems to sit around the point where the consequences of the large numbers of babies that have to be delivered early to save one baby are quite similar in some ways of measuring (though not strict mortality) to the complications to babies due to early delivery and mothers due to increased c-section rate. Also, the death rate is barely any larger than the death rate at that gestational age anyway, though there does seem to be enough information to determine that the death is due to the cholestasis, even though there isn't a good theory on how the cholestasis causes interuterine death.

Of all pregnancy related conditions, it's one I find particularly scary, medications don't fix it (though some help both with outcomes and symptoms), any monitoring other than constant monitoring of foetal heart rate doesn't predict it, and even then from first sign to death is short, so needs a fast emergency c-section to prevent.

So personally, based on the current information available, I'd definitely want to deliver at 37 weeks and possibly earlier, but that is a personal choice, which wouldn't be right for every woman and if a woman makes an educated choice, that should be respected. What does bother me is doctors who rely on serial liver enzyme tests and if they don't get worse hold off from delivering, when as yet, as far as I can tell, there isn't any evidence to support any reduced risk in these cases.

As for delivery if you decide to do it early, I'd try induction if you are a candidate, but I'd want continuous monitoring from the moment I entered the hospital, due to the sudden nature of the foetal demise. I've had a sucessful early induction for other reasons and although I got monitored more than a postdates induction, it was not continuous until the pitocin was started.
post #6 of 17
I had terrible itching with my twin pregnancy. It started at about 28 weeks. I mentioned it in passing to my ob at the end of the appointment and ended up in the hospital for a week while they tried to figure out what was going on.
I was tested for everything. In the end, I didn't have true cholestasis, but I had severe itching. I spent a good part of that month (28-32ish weeks) in the hospital. A week to figure out the itching, 10 days to get my blood sugar/insulin balance figured out... anyway.

In the end, they didn't diagnose anything in regards to the itching. I used topical sunburn gel (ocean potion sunburn, a blue gel with lidocane) on my skin, and used ice packs to calm it. It was miserable. I got through it. But, man, it was terrible.

The twins were delivered at 38 weeks (c-section) and had no trouble. A subsequent pregnancy with a singleton resulted in a later onset of the itching, but it still came. I suspect it wasn't as bad, but it's hard to compare.
She was born at 40 weeks with no complications. Personally, the difference between a baby at 40 weeks and 38 weeks was marked; enough so if I were to do it again I wouldn't schedule my twin c-section until closer to 40 weeks.

I hope you don't test positive for cholestasis. Good luck. I know that severe itching can make one crazy!
post #7 of 17
I had cholestasis with my first pregnancy. I did not have twins, but I was induced early because of it. I have been closely monitored with this pregnancy and my maternal fetal medicine specialist was planning to deliver at 37 weeks regardless if the medication lowered my numbers. i also had non-stress tests 2x a week just to be safe. I never had bile acids above 12, so I just got very lucky this time!

hope you don't have it, one less thing to worry about.
post #8 of 17
Not a twin mom, but in my first pregnancy I suspected cholestasis. I took milk thistle and it completely cured the itching. I was in labor a couple days later before I even had the chance to think about a possible induction and before I even had a chance to pursue testing to find out for sure. So who knows if I really had it.. all I know is the milk thistle was magic!
post #9 of 17
Thread Starter 
So, liver enzymes levels were "elevated," but not extremely elevated (high 50's, with 0-40 being normal), but I am awaiting the bile acid levels. Started milk thistle, but no relief! Anyone had luck changing to a lower fat diet?
post #10 of 17

The above link is a guideline produced by the RCOG, it's the British equivalent of the ACOG. It's 2006, so it's not bang uptodate, but it's a good baseline to compare any advice given.

In particularly unless there is new evidence I'm not aware of non stress tests are of no help, unless indicated for another reason. With the vast majority of complications of pregnancy a good NST is what it says it is, though the same isn't true for a bad one, but with cholestasis they are false reassurance.

It's worth double checking that the lab has used pregnancy ranges for test, there are so many different tests that doctors rely on the ranges given on the results, and depending on the lab or how the test was ordered, it might not have been done correctly.

Also, if itching presents early, you do need to recheck as the itching can happen before elevated levels show up on tests.
post #11 of 17
I had horrendous itching in my last pregnancy. I was tested twice for cholestasis, and although I don't know the #'s they said it wasn't cholestasis. What kind of meds were offered to you? The strongest thing offered to me was Benadryl which didn't do a thing. I was bruised & blistered from itching so much and I felt like a lunatic. It went away about 4 days after she was born at 37 weeks (both of my kids were naturally born at this time) for about a year. Now the last year my hands and feet itched sporadically. I really wish I knew what this is, if it isn't a random pregnancy issue.
post #12 of 17
Thread Starter 
So now I have been dx with cholestasis - my bile acid levels caught up with the itching; the liver enzymes were elevated to begin with. Then I see that OB has prescribed cholestyramine rather than ursodeoxycholic acid. Everything I've read says that cholest. has gone by the wayside for treatment of ICP and that urso. acid is the treatment of choice. Guess I'll be contacting them yet again tomorrow. Why did I trust them to know what to prescribe in the first place? It's like I had to beg to be tested for this to begin with; IMO, they should have suggested testing right after I described intense itching with no rash. I'm 37.5 weeks now and contemplating whether delivery should be moved up b/c of the cholestasis. Some studies point to increase risk of stillbirth; others say risk is the same as it is generally. Anyone have any addn'l thoughts?

annekh23, I have read that the urso. acid is supposed to cross the placenta(s) to help lower the bile salts, so that at least with that med., there is hope that it decreases any risk.
post #13 of 17
I just recently went through all the testing and thankfully my levels were normal. But, my OB is very all-natural, low-intervention, and even he was saying that if my levels were elevated we may have to consider induction. I'm only 33 weeks!

I'd sit down and have a heart to heart with your OB about what the real risks are. I had a tough time finding anything concrete on the internet. Half of what I read said that it can be seriously detrimental and the other half said that it can be controlled with medication and pose little risk.

You're doing great and you're full term! I'm jealous...I wish I were that much closer to the end of the itching...and mine is only PUPPP.
post #14 of 17
Thread Starter 
Valerie, thanks for your response. We are in a similar situation, it seems - I have a 5 year-old, a 2 year-old and, of course, the itching! Glad that you don't have cholestasis, but sorry to hear about the PUPPS.

I know what you mean about conflicting info. concerning cholestasis. It seems that early induction is being questioned as of late (esp. when treatment is bringing down the bile acid levels), but who knows. I guess the scary thing is that the levels can seriously jump towards the end, and there doesn't seem to be much warning. My sense is that they will push for intervention, but, like you said, at least it isn't really "early" intervention at this point. The OB office acts like cholestasis is pretty rare and that they rarely ever see cases, but from what I have read, it isn't really that rare in multiple births (can be as high as 21% occurrence rate). Either way, though, I am glad that I've made it this far and consider myself lucky to have had a fairly uneventful pregnancy up until this point!
post #15 of 17
It's funny....PUPPP even seems rare until you have it. Now friends are coming out of the woodwork saying that they had it too! I've even heard about two with cholestasis! One being my mother-in-law.

I think maybe in an individual office it is rare- we're just all spread out. But, you're sooooooo close! Are they doing NSTs and such to keep an eye on you? The b/w took so long for me I can't imagine they're checking you all that frequently for bile acid, are they?
post #16 of 17
Originally Posted by Freeman View Post
annekh23, I have read that the urso. acid is supposed to cross the placenta(s) to help lower the bile salts, so that at least with that med., there is hope that it decreases any risk.
urso is a relatively new treatment anyway, I haven't dug around much on it, but nor have I seen clear data that it does decrease risk.

Someone said something on another group about cholestasis a while ago that really struck a chord with me, that even though the data about increased risk of stillbirth isn't entirely clear, there is even less data about what happens to that risk as the pregnancy progresses further, we don't know if the apparent increase in the stillbirth rate at ~35-38 weeks is something that climbs, or is a peak. We don't even know what the mechanism is behind the stillbirths, everyone seems pretty confident that the way they happen is unique to cholestasis and so almost certainly related to it, but clueless as to why they happen and why they happen relatively rarely.

I'm pretty confident that in your position I'd go for delivery, but I'm not in your position, so it's pretty easy for me to say that. Of my 3 pregnancies only one has gone beyond your current date anyway, so I do have experience of slightly early babies. Very tough situation, I hope you figure out what to do.
post #17 of 17
Thread Starter 
Originally Posted by Valerieg View Post
The b/w took so long for me I can't imagine they're checking you all that frequently for bile acid, are they?
We are pretty close to a major lab that processes the testing here, and the bile acid tests come back in about 1 or 2 days, fortunately. I've had it tested twice so far. You know, at the mothers of twins club meeting I attended last week, one mom had PUPPS during pg., and another had cholestasis...we're not alone!
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