Obstetric Cholestasis - anyone else got this?

[KiwiKat]

I had OC in my first pregnancy, and was feeling very pleased that it hadn't developed this time, but it has suddenly popped up at 32 weeks. Bum, bum, bum!

However, at least I know what to expect this time. Anyone else going through this?

I haven't got a diagnosis yet, but I'm waiting for blood test results as I'm itching all over and have been for 2 weeks now (after 2-3 weeks of intermittent hand/feet issues), with it getting gradually worse.

Even if my test results are okay this week, I'm going to be pestering the doc to get them redone in a week as I'm really struggling and no-one has come up with an alternative reason for this level of itching.

It's driving me a bit crazy, so any tips would be welcome! My doc suggested Piriton, but that doesn't help the itching at all (another sign pointing towards OC I understand) and only helps me to get to sleep despite it.

The OC Support Site has been great and has given me the info I needed to make sure it gets checked out (e.e.g my GP forgot the BA test first time round ).

I'm 30 weeks and a GP I saw said I'd be unlucky to get OC this early, but that doesn't seem right from what I've read!

ATM I really feel in limbo, partly because we were planning for a home water birth and that will be out if it is OC.

Poor you (both of you), I remember what it was like... 30 weeks isn't early japhrimel!

Piriton did nothing for me.

Thanks, I thought that GP was talking nonsense!

Sorry to hear that this is causing you such distress, Japhrimel. Usually they diagnose OC at 35 weeks, but the symptoms can appear earlier than that - they did in my last pregnancy - and the blood tests are always way behind the symptoms - you know if you've got it by the symptoms before they're able to confirm it, iyswim. For example, my bile salts are 'slightly raised' but my symptoms are all there, waving at me, and because I've had it before, I know exactly what it is.

The main ones are the hands and feet itching, and dark urine, but also watch out for nausea and fatigue, which have just hit me.

GPs are just that - GENERAL practitioners, and OC is rare enough that they probably don't know the ins and outs too well. Have you spoken to the MW about this? Last time I took a drug called Ursodeoxycholic Acid (UDCA) which got the itching under control, but not sure if that's standard treatment.

They usually (but not always) induce OC babies at 37 weeks, so keep that in mind as an option b when you're planning. Is this your first baby?

I hope you get some answers soon.

Thanks KiwiKat. Yes, this is my first baby.

I'm just waiting for my test results tomorrow before I call my MW and update her either way. My antenatal care is shared between the CMW and my GP so I alternate standard appointments between them. I think I definitely need to get my MW onside as the GPs are being pretty useless - not surprisingly as you say. They seem to be taking the line that unless I get a positive test result, it cannot be OC, which I know isn't the case.

I'd like to discuss birth options in light of this too. Even if I don't get positive blood test results, I'm not sure I would be okay with going ahead with my HWB plans as I wouldn't consider myself to be a low-risk uncomplicated case anymore.

Hi Japhrimel, what news? And how are you feeling?

I've been diagnosed as a definite, and was given Urso on Thursday afternoon, off to see the specialist tomorrow. I'll be seeing her each week now until D Day, whenever that it is.

Don't suppose you're based in London, by any chance?

No, I'm out in Berkshire.

My tests so far are fine, so it may be hormonal itching that isn't OC. I'm getting retested every 7-10 days though and have asked to stay with MW only care as my GP is so useless with this. Luckily my MW and the hospital are being great so I'm happy that they're looking out for us properly.

The only thing I've found to really help is cold - cold water for handwashing, cool showers, ice packs for hands & feet at night, etc. Cooling moisturisers help a teeny bit.

My latest BA result is borderline - jumped from 7 to 12 in one week, so OC now looks likely. I'm booked to go into the Day Assessment Unit tomorrow to get things rolling.

Sorry to hear that, Japhrimel. Mine are 12 as well, but they're keeping it under control with the Urso, which has knocked the itching almost completely on the head. At this stage they think they'll schedule me for a c section when I'm 38 weeks - I'm 34 weeks today. I hope your itching gets better soon. It can be pretty horrible when it's intense! I'll be interested to hear what comes out of your appointment tomorrow.

quick question ladies.

do you itch all the time? i have been itching loads lately, but it's not all the time, a few bad episodes a day but really bad at night.

i haven't slep more than a few hours a night for the last 3 weeks.

makes me want to scream!

tia

It certainly doesn't drive me mad all through the day plus it's gradually got worse - mine started only in my hands & feet and only at night.

Definitely see your MW or GP and get tests done - make sure they check your bile acid levels!

Hi Mumatron, the itching usually begins slowly, then builds up - and it will always be more intense than the test results indicate. Japhrimel is right, get blood tests now, and even if the results aren't high yet, make sure they monitor them weekly or fortnightly. Also depends how far along you are, as the later it's diagnosed, it's harder to bring under control with the drug, meaning that your options for the birth become more limited. Good luck.

Japhrimel - what news?

Had a very positive morning with the DAU. OC diagnosed, Urso prescription issued and consultant appointment sorted. The SHO/registrar I saw said that hopefully I'll be able to go to full-term and have a natural delivery as it's been caught so early so hopefully the Uros will keep my BA levels down.

i will call and ask about tests tomorrow, although it seems to have eased a bit last night. i have a few of the other symptoms so better to be safe than sorry i suppose.

Make sure they check your bile acid levels as well as your LFTs (liver function tests).

Hi Ladies,

I posted a few days ago on another thread begging for miracle itching cures.

I am 28 weeks and had the tests at 26 weeks but everything came back normal. Went back and saw my GP at 27 weeks and she tested my bloods for kidney function? which was fine. Saw the MW again on Friday (routine) and told her things had not improved but she said it was my hormones, which I guess it may well be.

The itching is driving me absolutely nuts. Like Mumatron said I get a few bad spells in the day but its manageable. But in the night time I am utterly miserable. Had to kick lovely DH out on to the sofabed last night as I was just so wound up & frustrated. This has been going on for well over a month now. Luckily I have flexable hours at work so have managed to keep my sanity by lying in to catch up on sleep.

Next appointment is with the GP at 31 weeks, will def ask for more tests then but dont really want to ask before that in case they come up clear and I'm not sure Ill have the guts to ask a third time. My doc/MW are both lovely but so busy I'd hate to waste their time.

Any advice appreciated, how do I relieve the itch? the skin on my fingers is beginning to peel away, its not pretty :-(

You need to get your BA and LFT levels rechecked and soon. They should be rechecked every 7-10 days while you remain itching. With OC, it's normal for itching to start before any tests are positive, and then for BA levels to go up before LFTs are affected. So negative results mean nothing other than you can't yet get a diagnosis.

Really - you need to insist on getting your BA levels checked again - and again if they're negative. It's serious.

Yes, pregnancy itching can be down to the hormones without your liver being implicated (OC is due to hormones too!). But the serious risks with OC arise when you don't get diagnosed until your BA levels are in the danger zone (above 40, the risk to the baby increase and some women don't get diagnosed until they're over 100 or 200!). Early diagnosis and prompt treatment can mean the difference between going for a natural delivery at full-term and needing a sudden induction or EMCS at 37 weeks or having premature labour or risking your baby being stillborn.

Have you got a Day Assessment Unit or helpline at your hospital? Mine have been brilliant, especially as I had to fight with the GPs to get the tests in the first place.

Japhrimel is right - and there's no point taking piriton or applying calamine lotion, as the itching is being caused by the bile acids from inside your body and won't help the itching at all. However, the Urso has really helped with my itching, made a HUGE difference. Keep at your MW and GP - it's not their baby's life at stake - and after all, they are employed to give you the safest and least traumatic pregnancy and birth possible.

Because cholestasis is quite rare, unfortunately there is a lot of ignorance and misunderstanding about it and how to treat it, and the test results are slow to back up the symptoms.

Because of OC and the dithering and disagreement between the medical staff at the time, I had a failed induction and emergency c section at 37 weeks with my first child, and it was a truly frightening experience, a crap ending to what had been, until then, a straightforward and enjoyable pregnancy.

Although I have OC again in this pregnancy, this time I'm not frightened, I know what to expect, and the symptoms are being managed, as is the cause. However, it's only because I badgered the consultant (the MW said, "oh, you don't want to take any unnecessary blood tests", but I pushed for it) that we got onto it as quickly as we did. And even when the consultant confirmed that it looked like I did have it, and said that I would be GOING TO SEE the woman who specialises in this the following week, it's only because my pushy ex-MW mate rang the specialist woman that very day and directed her to view my hospital notes, that she rang me that same day to come in for Urso that very afternoon. Even so, had an insanely itchy few days before the drug kicked in, so thanks to pushy mate for moving things along for me. I've told specialist woman I am NOT happy with specialist chap for not setting up immediate appt with her, and she's advised me to complain to him direct when I see him at 38 weeks, and boyoboy! I'm certainly going to give him some grief.

Ahem. Sorry, rant over. Moral of story is, push for what YOU need, for both your and baby's health, as well as your peace of mind, no matter how they try to shut you down.

ok, thanks very much for you posts & advice. I showed my DH and we have made an appointment with the GP for Wed and he is going to come a long to back me up, (I can be a bit of wimp around doctors).

I looked at my notes and it mentions Liver Function tests but not Bile acids, so will check if that was done or not. I don't want to assume I have it, people have all sorts of reactions to pregnancy but I did want to ask about URSO. I read a bit about it and from what understand it has not been fully tested. Just wondered what your thoughts were on this, I'm nervous about taking something unknown.

Thanks again for all your advice.

A quick footnote, Readyornot - OC is usually diagnosed around 35 weeks, as that's when the symptoms most often appear, and the tests start to back up the symptoms. Don't be surprised if the tests are inconclusive at 28 weeks, but DO make them test frequently from now on. Best of luck - I hope it all goes well.

The doc I saw at DAU who diagnosed me said that it was common for women to not get diagnosed until 35/36 weeks, but that often by then the blood BA levels would be in the danger zone (over 40) so early induction would be needed.

Whereas if you can get your BA levels monitored so that if it is OC it gets diagnosed as early as possible, then it's possible to keep the BA levels from ever going over 40 so a natural birth may be okay (what we're hoping for in my case).

Urso hasn't had many proper double-blind placebo controlled studies done on it use as a treatment for OC, that is correct. However, the issue there is not the common issue with meds in pregnancy, where women/companies are not willing to try the drug in pregnancy because of the unknown risks. Because Urso is the only med known to really help OC and so can reduce the stillbirth risk, many women (like me!) would not be happy joining a trial because you may get given a placebo not the drug. So they struggle to get enough OC women on trials as they don't want to risk their babies' health by not taking the drug.

However, it has been used for some years as the main treatment for OC and the research agrees that it helps and doesn't seem to cause issues - possible known side effects are really just diarrhoea and nausea and I'm finding they're less if I take it with food, not after food.

Obviously, do your own research and discuss it with your doctors if it is recommended you take Urso. Personally, I was far happier taking it than not taking it.

No side effects for me at all - and no more itching, yahoo!

I hope you do get to have a natural birth, Japhrimel. My specialist agreed with the information that you've been given, if the condition is brought under control early enough, then there's no reason that you shouldn't have a natural birth. Fingers crossed for you.

Thanks KiwiKat.

How long did it take for the Urso to help your itching? I think mine is less already, but I've now got a stinking cold so feel pretty rotten anyway.

Great information, thank you.

Can I ask how far along you each are? and when were you diagnosed?

I'm 32 weeks tomorrow and got diagnosed last Saturday at 31+3. My itching started in my hands/feet at about 27 weeks and became widespread at 28+5.