No fibroscan

[Cumbria7]

Hi

It’s been 2 months since I was diagnosed, still no fibroscan, the gastro consultant is supposed to be ringing me with the blood results and fibroscan results next month but despite chasing have not had. I have not been to work for 2 months as head is still mashed and get extremely fatigued in the afternoon's. Still itching although my bilirubin is normal, which is what causes the itch, joints are very painful and ache especially from my lower back down. But also have a painful left shoulder. I could cope better if I had some reassurance and answers but not forthcoming. I am totally fed up😏

[Privatelangers]

It was about 3 years before I got my first fibroscan, 5 years before I got medication, which I had to fight for. 2 months after diagnosis and I hadn't even got an appointment to see a consultant, not that they've been that great anyway. I'm guessing I didn't win the postcode lottery for treatment.

[Cumbria7 in reply to Privatelangers]

Hi

Thanks for that reply, that is shocking I thought my scenario was bad, hope things improve for you xx

[Dibbles2023]

Sorry to hear of your predicament. However, it was 14 years before I got a fibroscan, and even then I had to go private to get it.

It was 10 years after the M2 antibodies appeared before I got a diagnosis. Although like many on here, I probably had it without the antibodies for a previous 7 years, during which I had raised ALP and GGT.

LOL I must have asked a dozen Dr’s ‘Do I have PBC?’ I’ve lost count of the excuses given. They were varied, from, ‘Some people just fall outside the range’. To, ‘raised ALP can come from anywhere, I wouldn’t worry about it’. Whatever I asked, the excuse mostly contradicted what they had just previously told me. It wasn’t my liver it was my bone, was given if I asked about my liver. It wasn’t my bone it was my liver, maybe something in my diet, etc etc., when I asked if it was osteoporosis. Docsplaining, is a terrible thing, for women anyway, especially women of a certain age.

After the antibodies were found, along with damage shown on CT? Then I was told they thought it was PBC when I was last seen ten years previously. Followed by being told they didn’t think I needed medication yet.

Follow up appointments? None in five years since that day.

I never even got a DEXA scan, despite having raised ALP & GGT for twenty years.

I eventually got a DEXA after pushing for five years for a scan.

LOL I would be told I must have constipation, when complaining of spine pain, when in actual fact I had severe spinal osteoporosis.

I eventually got a GP a year or two after diagnosis, who put me on ursodiol.

I really do hope you have much better treatment than many of us have had. Some people are lucky, I hope you are one of them, and that treatment is better in Cumbria. Beautiful part of the world BTW.👍🫠 Don’t let my experience scare you😊 Just know you may have to push, I sincerely hope not though.

[Giraffe44]

Sorry to hear you are struggling. A new diagnosis and feeling unwell are hard to cope with but there is help available. If you haven’t joined already I would strongly recommend you contact the PBC Foundation in Edinburgh. They are wonderful at providing support and up to date information and can guide you in asking the right questions of your clinicians and help you to get the treatment you need.

[Cumbria7 in reply to Giraffe44]

Thank you so much. I am already a member of the pbc foundation, and they do help alongside the wonderful members on this forum xx

[Giraffe44 in reply to Cumbria7]

Keep pressing for answers, be as prepared as you can with your questions. Best wishes

[Dinasmom]

Hi. I’m a RN with PBC. Have you had a biopsy? If so, fibroscan at this point not as important. If you haven’t, definitely push for the scan. You want some sort of staging to see how advanced the PBC is. FYI, I actually reversed my PBC a full stage by a Mediterranean diet and losing weight.

[LaoUK in reply to Dinasmom]

Hi Dinasmon, I was told by my consultant that PBC can't be reversed, how exactly did you do it, if you don't mind me asking. I'm also struggling with consultants here, not getting the help I need.

[Dinasmom in reply to LaoUK]

If he means by reversal that you can be cured of PBC, he is right. I still have it. But by losing weight, eating extremely healthy and eliminating inflammatory foods, my scan showed less inflammation and active disease than when I was diagnosed.