AIH/PBC Overlap Anyone on urso & Mercap

[Eternity6]

basically this , love to know how everyone is doing ! Must admit I’m feeling a bit overwhelmed since having the pbc diagnosis

[She-66]

hi … yea i’m on both of these along with prednisolone and vit d tablets . was diagnosed jan 22 . doing good . just get tired x

[Eternity6 in reply to She-66]

what dosage are you onShe-66 I’m finding I’m not sleeping on it only getting very few hours sleep now, and it’s only the second night I’ve taken it , having unusual dreams. I also on vit d and pred

[She-66 in reply to Eternity6]

i’m only on 5mg of pred now …. started on 30 . my sleep was shot ! loads better now . are you taking it first thing ?

[Eternity6 in reply to She-66]

I’m on pred 5mg have been for many years but am being put up to bude 9mg after blood tests and I’m not looking forward to such a high dose , I’m interested to know what Mg were you on when taking mercap it’s that that’s giving me insomnia , have you got AIH/pBC overlap ? Do you take urso

[She-66 in reply to Eternity6]

yea i have pbc /aih … 3 urso tablets a day from the start. weaned slowly down off pred …. sure they said it’s the steroids that causes insomnia

[Eternity6 in reply to She-66]

I’ve sent you a direct message

[Readlots]

Hi, I have PBC/ AIH overlap. I’m on Urso for PBC and Azathioprine for the AIH. I have had short doses of Budesonide for flare ups. This cause really weird dreams and I was glad when the course finished.

Any diagnosis can be overwhelming sotreat yourself gently while your getting used to things.

[Eternity6 in reply to Readlots]

yes I think it’s going to take a bit of getting used to and now three more tabs added what dose of Bud were you taking please

[Readlots in reply to Eternity6]

Only 3mg per day for a month. Just waiting for blood results to see if my levels have gone back to my normal. But I was diagnosed early and only have mild fibrosis, so my levels are generally very good with treatment.

I’ve been diagnosed for over 10 years now and am doing well. I worked full time until last year (age54) when I decided to go part time. I manage the fatigue by prioritising activities depending on my energy levels. My Mum also had PBC. She lived a full and active life. She died 2 years ago at 75.

People hear liver disease and thinks it’s dire, but it doesn’t have to be. Give yourself time to get used to your diagnosis and talk to the nurses on the BLT helpline if you need support

[Eternity6 in reply to Readlots]

thank you, I have mild fibrosis too, I’m being put on 9 Mg bud but my hep a new one to me, says he wants me off steriods as I’ve been on them for years no break so I’m thinking he’s going to zap me I’m going to be having weekly blood tests so he be keeping an eye on me closely to see what’s going on for which I’m grateful

[Readlots in reply to Eternity6]

If they are doing weekly bloods they’ll know what’s going on and hopefully you’ll be fine without steroids and just need occasional short doses of them to manage flare ups. As they learn more about the disease treatments change, so it’s good to have new doctors with new ideas.

[Eternity6]

yes that’s right, I think I’m overwhelmed as he’s changing three meds to higher does whereas my other consultant kept me on the same doses for years . So it’s a big shock when someone new starts changing everything! The first consultant was a gastroenterologist though this consultant is a hep

[Readlots]

A hepatologist is more of a specialist. I do like to understand why changes are being made and why different treatments are being given though. I’m happy to try something if I understand why. I’m not one for blindly following doctors orders. After all it’s my body and I’m the one who’ll be getting any side effects! I’m probably a nightmare patient… If something is making you feel a bit uncertain, I’d ask. There’s probably a very good reason for the changes in medication.

[Eternity6 in reply to Readlots]

snap I’m the same I question everything and always have to know why I’m being given this etc, if you are a nightmare readlots then I am too, but seriously I will try things but if I feel I’m not getting any better then obviously I tell them and ask what the next step is