Hello, new to the forum. had ultrasound on tues, anyone been down the private road re getting diagnosis confirmed. so i can get in system.

[Andy2Teas]

Been feeeling rough for a few weeks with what i thought was indigestion. Went to doctors after a couple of weeks. High Levels in Blood results so scan booked, which I had on Tues. I have all the symptoms , but find that the aching limbs anditchy skin are the worse. especially the itching at nights (very little sleep now for about a week). It is going to be 4 Aug before I know the results of ultrasound, and then I expect there will be a MRI and further tests.

[Buddy2017]

Are you in the UK ? Personally I wouldn't bother with going private unless you have a lot of money to spare . I can't remember having an MRI , it's 12 years since I was diagnosed though . Usually you only get an ultra sound and if you are lucky a Fibro scan . The consultant should go through everything with you , give you Urso and something for the itch , then it's blood tests every 6 months and a follow up to see how you are getting on . In my case it's every 12 months .....I haven't seen a doc since covid , just telephone appointments , though I have got a face to face appointment in 2024 . Good luck , I hope you get the right treatment in August

[Andy2Teas in reply to Buddy2017]

thanks for your reply. Yes in uk. Had a couple of bad experiences with nhs just recently, but have been told I’ve got a specialist appt next Thursday, so maybe I can save myself some money after all. I’ve got some cream from the pharmacist and although it eases the irritation for about 10-15mins, it soon starts up again.

[butterflyEi]

I echo everything that Buddy2017 has said but would add that if you have not already joined the PBC Foundation.org then it is highly recommended that you do. There is a lay persons guide to the EASL recommendations for PBC which will give you a lot of information.

Is it possible to up date your bio information to say which country you are in and whether you are male or female as this helps with replies from the group which reaches many countries where sourcing treatment is different.

If your blood tests have shown all the markers for PBC you will be prescribed URSOdeoxycholic Acid and you may find that once it is in your system your symptoms will improve. Your GP can prescribe Cholestyramine for the itch but it is a pretty horrible medication to take, although the leaftlet says water or juice I used to mix mine up with porridge or overnight oats. Make sure you keep your skin well moisturised and whilst you wait for medical treatment you can buy over the counter antihistamine such as Cetirizine to help with the itch or at least help you feel a bit more drowsy as night to aid sleep.

Do a search on the page for the itch - there are quite a few contributions which may help you.

[Andy2Teas in reply to butterflyEi]

thanks for the reply and information, I’ll try and update my info, was very uncomfortable and distracted when I filled in the info the other day.

[butterflyEi in reply to Andy2Teas]

Hope you get your diagnosis soon. The itch is very distracting, mine was very bad but I now take medication for it. Let us know how you get on.Best wishes

[Sister65]

Cholestryamine powder is awful but the itch is worse. I have heard that you can get it as a pill now. There are also some anti-anxiety meds which help with itch on a low dose. I found the itch maddening. It was the symptom which drove me to Dr's. I have been on urso for about 6 months and now any itch is manageable. You have to find relief as the lack of sleep exacerbates all other problems. Good luck to you