Any other Obstetric Cholestasis sufferers out there?

[Pickle]

I was just wondering if any of you have suffered (or are suffering) from OC in pregnancy?

I'm 33 weeks into my 3rd pregnancy, with symptoms getting worse by the day - last night being my worst night so far. I also had it in my two other pregnancies - starting at around the 30 week mark both times.

I am a member of a few online OC support groups, but it would be interesting to hear from others in this situation locally. For me the hardest thing is trying to explain to others what's wrong, as people don't tend to take it seriously when they're told the main symptom is itching - I often get people responding with "oh yes, I suffered from itching when I was pregnant".

It's such a hard thing to explain, although after the night I had last night (woken by it at 1am, tried unsuccessfully to get back to sleep until 2am, got up at 2 and sat downstairs in the cold attempting to get the attack under control until 4:30, back to bed and finally asleep at 6, alarm goes at 6:45am...) I would say that it's the kind of itching that makes you want to get a piece of industrial sandpaper and take layers of skin off until you reach the source. It's under the skin, feels like you have millions of little creatures running around (although might be different for others I guess). It centred around the feet and hands, but I find during an "attack" it spreads to just about everywhere. Horrible. I wake up most mornings with bleeding hands and feet due to the fact that I've been scratching while asleep :(

On the plus side, it's thanks to this condition that I've always found the newborn stage quite easy as have always managed to get more sleep with a new baby in the house than OC!

Anyway, is there anyone else out there suffering that wants to share tips and support?

[Lochie]

hi pickle, I had OC with my first child. It was diagnosed really late at about 39 weeks so instead of being induced I was just monitored at home with trips up to hospital to check fetal movements and I also had to keep a daily kick chart(stressful!) - I don't think I was a severe case and was told to just take piriton . I had never heard of OC at the time and my midwife only took some blood to test because I had quite severe scratches across my stomach from itching at night. I had been rubbing my palms on carpets/sofas/anything textured religiously for a few months before that though - you don't think of it at the time as being anything significant and I thought it was just some weird preggo quirk.

Actually when I was seen at hospital (not Kings) with it they were asking all sorts of questions about my drinking habits which is quite interesting. I think OC is still seen as being quite rare (is it 1% or something?) but a lady next to me at work actually had it at the same time as me.

I'm now 29 weeks pregnant with second child and know its highly likely i'll get it again.

I do remember the dreadful dreadful night time itching and that is the last thing you need or want when you need to be getting some rest. When I had it it was summer so i'd put a fan on and that kind of helped but now its winter and so cold so that is not really an option! I did end up sleeping in a seperate bed to my husband as I felt so guilty about keeping him awake with my itching and also to be honest I think the thought of having anyone around you whilst you are itching makes it even worse.

The one thing I did do that might help (because I found it a bit freaky that I could itch my stomach so much in my sleep without waking) was put something over my hands when I went to bed - at the time it was a dressing gown, but might make more sense to put socks on your hands? Also obviously keep nails short. During an attack maybe get a cool cloth to sooth area.... all really obvious and am sure you are doing all this.

Good luck and remember its not long now (though am sure every itchy minute is hell)

[Pickle]

Yes, all those tips are good ones. I cut my nails at 3am this morning in an attempt to reduce the damage I can do to myself!

I have found diet can make a huge difference, and in this pregnancy have been really careful pretty much from the day I found out I was pregnant, more so in the past couple of months. I have found triggers are anything salty/fatty/spicy as well as caffeine and alcohol (which makes sense given it's a liver problem), so have cut all of those things out of my diet. Whether it's worked or not is hard to tell, I'm still suffering badly, but perhaps it would be worse if I was eating anything with flavour!

My 2nd pregnancy was a summer one, and I do remember it being hell during the day as well as nighttime due to the outside temperature - for once in my life I'm enjoying doing the school run in the cold as it really helps.

I find by late afternoon my clothes are driving me mad, anything that clings to my skin is too much to bear (so once the school run is done for the day I'm generally to be found wearing hubbies t-shirts and trackie bottoms!), and the poor kids know not to try to cuddle me :( I often jump in a cold shower in the evening to try and calm it down - it does give temporary relief.

I'm taking piriton when I find it too much to bear (doesn't seem to help much, if at all), but am reluctant to take the high doses at this point as it will mean I can't drive, which for me is a nightmare. May up my dosage over Xmas while hubby is off work. I've previously used urso (the acid) which didn't help my symptoms at all. Such a frustrating illness.

I'm sure it goes undiagnosed in a lot of people, as apparently is more common in the very late stages of pregnancy - by which time when blood results come back etc. you've had the baby and it's gone. I think I'm a bit unusual in that I've had it so early on all 3 times. I'm very thankful for the service my midwife has been providing me with, saving me lots of trips to hospital for blood tests and monitoring, she has been a godsend doing it all at home for me.

Thankfully so far baby is fine, very active so putting my mind at rest. And with potentially only 4 weeks to go at least there is an end in sight.

[Lochie]

yes I would up the piriton doseage maybe at night, it might help you sleep? I wouldn't worry about taking it I have spent alot of my pregnancy on antihistamines for vomiting and they have been ok, no problems.

I reckon you should really try and find something in the day that gives you relief so at least you have that to look forward to - have you thought about swimming? I can't think of anything nicer than being in a lovely cool pool when you want to scratch your skin off!

[Pickle]

I've been taking it at nighttime, sometimes it helps by making me drowsy but not always. I took a huge dose last night and it didn't seem to help at all.

Typically it's worse just as the school holidays are approaching, so I'll be very limited in what I can do to help myself during the day (at the moment I only get a couple of hours without children, as my youngest is in nursery mornings only). Usually though, daytimes aren't too bad, it's evenings onwards when I struggle. Today has been a bad day though, thankfully my little girl seems to realise that Mummy is not at her best today and is being really good.

[juliap]

Hello

You have my sympathy. I suffered from OC in my first preganancy and it was hell. I know quite a few other mums who've had it too - I don't think it can be as rare as the books suggest!

The urso really worked for me - is it worth going back to the consultant at King's (am assuming that's where you're being seen) to see if they can change the dose?

The only other thing that helped me was getting the chemist to make me a mixture of aqueous cream with 1% menthol. The cream this produces is so cold it nearly takes your breath away when you put in on your skin, but I found it gave me just enough relief to be able to get to sleep.

I'll never forget sitting in the bathroom with the windows open on a freezing cold February night, with my feet in a bath of ice cold water, though! The itching makes you do really crazy things. Your description of it is perfect - it really feels like insects under your skin.

I also found that diet made a big difference - I was really careful about what I ate once I had the diagnosis, and also drank a lot of water to help my poor old liver.

Good luck - at least you're near the end now.

[Pickle]

Hey Julia, thanks for your response.

It seems the thinking on urso changes quite often - 1st pregnancy I was given the highest dose possible and it didn't help me at all. 2nd pregnancy they no longer offered it as it was felt the benefits weren't there. Now they are again offering it, but in my case they want to hold off using it so they can see the true extent of my bile acid results (they were up in the 200's in prior pregnancies) as it's felt the higher the acids the more the risk to the baby. Urso will bring the levels down, but also mask the severity of the condition. As it didn't work for me before I feel this is the right decision as I would rather know what's going on in terms of the numbers.

Yes, I have a lifetime supply of the cream in the bathroom. It used to be hubby's job in the middle of the night to put in on the backs of my legs and my feet. And yes, I too have sat in a cold bathroom in the small hours soaking my feet in cold water - OC sufferers think alike!

Today has been horrible, I've now taken another large dose of piriton to no avail, still itching like mad (and have a very short fuse with poor kids!). I only hope this particular attack works it's course before bedtime.

[Ko]

i'm not an OC sufferer but can really sympathise about the itching. i had severe eczema in my pregnancy (and have bad ezcema on and off all the time, but much worse when i was pregnant).

it drives you insane and yes i also scratch in my sleep and wake up with bleeding skin. i have to keep my nails supershort, so no fancy manicures for me usually!

cold cream kept in the fridge helps a little. taking antihistamines takes the edge off the itch but again only works a little in comparison to how bad the itching is.

i actually sat at the dermatologist's when i was pregnant and burst out crying as i was so utterly miserable and tired, not able to get a good night's sleep and just fed up of it.

xxx

[Belle]

Ko - I could have posted your message, same here. So do totally sympathise Pickle, and particularly because of the stresses which must go alongside the condition, with all the tests and monitoring etc.

Guessing you've tried every cream Pickle. I found Doublebase good in pregnancy as my eczema went through the roof, have scarred my legs I think :(

Don't know if it is safe - perhaps this late on it would be ok - but my doctors when I was young used to recommend short hot showers to kill the itch (basically similar effect to v cold water). I always took the cotton gloves off in my sleep - and anyway, it sounds like you want not just to not scratch, but to not itch in the first place. Really hope these next few weeks go fast for you, pregnancy with other children to look after is hard enough as it is.

Sorry not to be of more help...

[Ko]

hi belle - the scars will go eventually! i also had bad scars on my legs at one point.

i had ezcema on my face as well during pregnancy and as the skin was so sore, i had to stop eating food with any sorts of spices as it aggravated my skin even more - eating plain food was not much fun.

pickle - i also found sleep easier with a newborn baby! pregnancy just had too many aches/pains/morning (read as: all day) sickness for me.

i can't imagine what its like being pregnant and feeling unwell, while also having other children to look after. you are doing an amazing job looking after two children and carrying your third xxx

[Pickle]

Thanks ladies, sounds like ezcema is also horrible to deal with! I guess the major difference is that OC is not a skin condition, it's a blood condition, so the creams etc don't tend to have much impact as the problem lies within the veins and not on the surface.

My night was *slightly* better, although I spent an hour with my feet in a cold bath from midnight (till the point where they basically turned blue!). But that did seem to kill the itch enough for me to then get to sleep for around 4.5 hours which is a vast improvement on the previous night.

Belle - I agree with Ko that the scars will go, I had terrible ones from my 1st pregnancy, all around my ankles and feet, but they did go (only to now return!).

I have a busy day ahead, so am hoping that it will help to keep my mind off it. Have decided to take the maximum dose of Piriton today as I don't need to drive anywhere and hopefully it will help (although I just hope it doesn't mean I fall asleep in my daughter's nursery show - that wouldn't look good!).

P x

[The Nappy Lady]

Pickle, so sorry you're suffering like this.

Xxx