Anyone had CHOLASTASIS 2nd time round???

[nannyjo]

I'm 21 weeks prgnant and have been told 2 different theories from 2 different consultants on what is likely to happen to me this time round.

Anyoone else out there who has any experience on the type of treatment i may recieve, when it could start, the chances of me getting it again etc?

Any advice would be gratefully appreciated thank you

Prufrock had this, search on her name.

does anyone know whether profrock is still a regular poster???

sorry, found her. Helps if you put the name in right??

sorry i just wanted to bump this to see if there is anyone on now who could help me with this.

Thanks

Hi Nannyjo

I had cholestasis with DD and was told I had a 50:50 chance of getting it with subsequent pgs. Unfortunately had 2 mc since then and I'm currently 4.5 wk pg, but had very light spotting again this afternoon, so not sure this one is going to work either. but I do worry that once I'm past that worry, I then have to worry about the itching again!!

I was told that if I did get it, it would probably start earlier in my pg, but at least I would know what to look for. My antenatal care was impeccable when they found out last time - unfortunately I've moved now, so hope round here is as good, should I get it again.

And DD hasn't suffered in the slightist being induced 4 weeks early due to the cholestasis in her pg.

I hope you are ok.

HTH
x

Hello. Yes I had it second time round. I had early onset cholestasis first time - started itching at 14 weeks, LFT's sky high by 26 weeks though bile acids only became raised at about 30 weeks. I was induced at 36 weeks and ended up with an emergency c-section 2 days later.

2nd time round I started itching v. early again. Was started on Urso at about 20 weeks I think, had weekly blood tests at hospital FAU, and fortnightly scans/dopplers - which became weekly later on. Had an elective c-section (consultant didn't recommend induction after previous C-sction, especially as I hadn't even got fully efacec first time round) at 37 weeks.

2nd experience was so much better, mainly because my amazing midwife in the FAU managed to wangle me into the care of a superb consultant, and becasue I had private medical insurance. So whilst ante-natal care was in NHS, I was able to have a private c-section - with the same consultant - at John and Lizzies which was bliss. Bt also I knew what was likely to happen - had learnt all the itch relieving tricks, and knew that although there is a risk to the baby, I had already managed to have one perfect child despite the OC so was confident I oculd do it again. (Not confident enough to go through a third pregnancy now though)

Your care should consist of regular LFT's and bile acids tests (fortnightly at least) until diagnosis. Urso would then usually be prescribed, but there isn't a huge amount of evidence to say it works - although in my case it did relieve bot h itching and bring down LFT levels. Vitamin K is often also prescribed. Apart from that you just have to make a decision on delivery options. Many doctors will still recommend regular CTG monitoring and even admittance to enable it to take place. There is no clinical evidence that this helps, so don't feel you have to agree to it - IMO the stress of long hospital appointments and staying in hospital outweighs any supposed benefit.

Pupuce posted a really good recent update here It might be worth printing it out and getting your doctors to read it

Just to add, I got it in all three of my pregnancies. The itching kicked in earlier and was more pronounced with each one.

Hi i am 33wks pregnant with third child i did not have oc with first but had it with 2nd and now got it again,(was told as different father from first child thats why never got it with first pregnancy). My itching started about 26wks and new instantly it was oc my bloods have gone up from normal to 235 in three weeks and was induced with second child at bloods 350 (does any one else out there no what there bloods were)?

I have been put on ursodeoxycholic acid, piriton and vitamin K and itching seems alot better as sleeping loads better. I have been told i am going to be induced at 37 wks which is a worry as i had emergency c section with second after being induced i have been told can have another c section but dont want the long recovery so i have opted for natural, but chances are quite high for assisted delivery and have been told horror stories of it being more painful.
I was told it was quite high to get it again but you will no when you start itching!

Hi helarno. I presume you are quoting AST levels rather than bile acids s highest bile acids documented in the literature I've read were 72! In which case yes, I do know - my AST levels peaked at 479 in my second test after diagnisos, but after a week of urso were back down to 78 (normal is 30-45 I think). But there doesn't acualy seem to be any correllation between maternal transemanine levels (AST, ALT and ALP) and incidence of fetal distress - ie, anything above normal is bad, but way above normal dosn't appear to be anyworse than just slightly above normal. My consultants reasoning for doing LFT's was simply to note when they started rising again -which meant the urso wasn't working so dosage needed to be upped.

The piriton actually has no effect on your itching - but is probably helping because it has a mild sedative effect so is helping you sleep.

Regarding your delivery - I personally pted fro an elective section because I really wanted to avoid having another emergency after days of inneffective labouring. And I found the recovery after my elective far easier than ater my first emergecy because I was refreshed and ready for it beforhand. But I wish you all the best with your VBAC - if you've aleady had your first naturally then you have a much beter chance than I would have had. I would advise you to have a plan agreed with your consultant in case the inducion doesn't work straightaway though - know in dvance exctly how much intervention you want to have before opting for a c-section - there's nothing worse than labouring for days and still ending up with an operation to recover from.

thank you all for your messages.

The reason i asked is because i saw the consultant last week and she said i will get it but not till 30 weeks so she said have bloods taken and she'll see me then. I thought that was a long time away and a lot could happen in that time and was worried about it.

She said any itching i get before then can't be cholestasis and not to worry about it.

I said we were told i could get it earlier and if so it could be treated with urso, she laughed and said it would not come early and the urso did nothing to help the baby but may reduce my itching but basically with there being little evidence of the drug i should not bother at all and use topical creams to help with itching.

To be honest she left me feeling really concerned about the level of care i was going to get and with no confidence that i wil be monitered sufficiently.

Should i accept that or try to get to see someone else with a second opinion, however if i do do this what route do i take to organise it?

This makes me SO mad. Cholestasis can happen pre 30 weeks - it's rare, but it can happen. If you are itching, and have a previous history of OC, then it would be extremely unlikely for it to be aything but cholestasis.

I would definately ask for a second opinion. Did you have urso last time, and did it help? If so, go and see your midwife, armed with the RCOG factsheet I linked to, and say that you are not happy with the consultants advice, and that though you accept there is no definitive clinical evidence that urso works for everyone, it did work for you last time so will again.

Having said that - if you aren't itching, then it is perfectly safe to wait until 30 weeks. There are no cases in the literature (at least the literature I've raed - which is extensive) of women losing babies to OC before this point. so there is little point in unecessarily medicalising your pregnancy util then. But if you are having problems youa have a right to have these taken seriously and treated.

thanks prufrock, i'm not itching so i'll just try to relax and cross that bridge when i get there i think.

Last time i got OC at 32 weeks but it came on very quickly and i was induced at 34 weeks because my bile acids shot through the roof, (that was a fight as well cos they refused to test them to start with as it is costly to the NHS!!!) So i never used URSO as it was too late at that stage anyway.

I see my midwife in 2 weeks, i'll ask her then what she thinks i should do, i got the impression she thought i would have more monitoring then this and i do think shes good so that should help keep things right.

Thank you for your help and i hope you don't mind if i contact you again in the future as it's helps to feel someone knows what it is like and can give me some sane advice so my mind doesn't go into overdrive

Thanks all aswell its realy good to hear other stories and the advice is good!

When the itching was really bad was only sleeping couple hour a night and felt could no longer cope i was about 29wks it was a sat and decided to go hospital (i called first)and get some thing to help with itching and when i told midwife i was itchy all over as my itching is actually worse on arms and lower legs at mo she said well that cant be oc as it is only on hands and feet. I felt quite bad and was thinking i am maybe being a bit over sensitive but now i have been diagnosed and even though i do have itching on hands and feet it does not seem as bad as upper arms and lower legs.

I always think trust your gut instinct and no matter how they make you feel demand a blood test.

nannyjo - if you want to e-mail me on prufrock at hotmail dot co dot uk please do. I would also suggest you speak to Judith - her number is on the fact sheet - she's an amazing woman who set up the support line after she lost 2 babies to OC, and she will probably be more use than me on recent developments - it's 2.5 years since I suffered so things may have changed

thank you.

Helano, if only it was only hands and feet

I had it so bad that my husband was too scared to go anywhere with me cos i looked like i'd been beaten to bits. I bruise easily anyway and basically everywhere i could reach was raw and black with bruises

I still have damaged scar tissue under the skin on the tops of my thighs from it.

prufrock,
I found reading through the link that you set up earlier very useful but i didn't notice a number or mention of Judith (is this pupice as her MN name?)

Is that the fact sheet that you mean?

I dint get any treatment but that was 5 years ago and was told there was nothing they could give me. I stopped all salty food and just had fruit and salads and it worked

Sorry - always get her name wrong - it's Jenny Chambers - [email protected] or telephone: +44 (0) 7970 367973.

Just to let you know I've had it twice as well. If there is anything I can do to help, just shout (not too loudly though, I'm a bit under the weather at the moment... )

thanks maryBS, it''s nice to know there is lots of supprt out there

Hope your feeling better soon

Funnily enough, I spoke to my GP about this yesterday. I got OC in my first pregnancy and am really scared about going for no2. She looked at some info on her computer (maybe it was mumsnet ) and told me i had a 40% chance of getting it again.

I'm really convinced that diet has a lot to do with how well you can get through OC - I felt better by avoiding red meat and fatty foods, even though it made pregnancy even more boring. Am going to do this from the start next time and hope this helps to keep the OC away. Fingers crossed for you!

i don't understand how my diet can effect the process of cholestasis??

I've not read or heard anything about that before