Who is the oldest member on this site?

[Gioielli]

I have had PBC for 16years now and am 68 years old. Just wondering who is the oldest and how long you have had PBC.

[butterflyEi]

Hi, hope you are keeping well.

I will be 71 this year, spoke to a GP around the mid 90s who suggested menopause or depression as the cause of symptoms finally got a diagnosis in 2006. I believe the PBC Foundation knew of a woman over 100 who died with PBC not because of it.

[Wrecklesham in reply to butterflyEi]

I think I must be the granny as I am 80 and suffered from fibromyalgia since I was 60 I still find it difficult to cope as I have 6 bones in the bottom of my spine pinching the nerves and now the top is going so fingers on both hands feel dead. Doctor sent letter to the consultant before pandemic but not even had an acknowledgment.It is difficult to live with but I make myself walk my little dog twice a day and it does help to ease the pain. But sadly driving is difficult so I don't go far.

[Cressy]

Hi Gioielli, I will be 78 in June and was diagnosed in 2003.

[Candy12]

I’am just a baby then, 😊I’am 68 , I was diagnosed 2009, but think I had it a few years before then and my thoughts are now it was around 5 years previous. My sheerwave last year was still in the F0-F1 range which is normal to mild at 6kpa.

[Abstractionist]

Hi everyone. I will be 80 this autumn. I was diagnosed about 2 years ago, and my numbers came down with Urso.

[Oidra]

82 next month and with fingers crossed hope to be enjoying many more years. Diagnosed by accident in 2000 .

[doberanne]

I'm 82 and have had PBC for many years, but not diagnosed until I was hospitalized 1n 2005 with a stroke. Nobody appeared to know what was wrong and took ill-health retirement at 52. The itch and lethargy are frequently unbearable, but I am well looked after by my consultant every 6 months.

[zinchunter]

79 in July. Diagnosed 2008. URSO non-respondee so take bezafibrate as well. Looking at other replies it looks like we live longer than general population!

[CBCB]

70 and have had PBC over 20 years. Controlled with Ursodiol fairly well.

[witchiegirl]

I thought I might be one of the oldies but I see at 61 I’m just a youngster.

[Triciawc]

Guess I’m a youngster too at 67. Diagnosed at 60, the year my warranty expired.

[Gioielli]

Thank you to everyone for all your replies. Great news that we are all getting older but generally coping ok and keep on living. 🥰

[gwillistexas]

I will be 68 in July. I was diagnosed in 2017.

[janetfolley]

I'm 73 and diagnosed with Pbc in 2004....

[Pirog57]

I’m 64. Have PBC for 17 years, still stage 2.

Two weeks ago my doctor invited me to participate in a clinical study for a new drug. According to my last Fibroscan, which was 9,2 in 2019 I was eligible to participate.

They’ve done Fibroscan again and it was 7,5

My doctor was surprised , the scaring got better. I am not eligible any more.

What could’ve helped it?

I started taking Neprinol , Nattokinase and Serrapeptase which are proteolytic enzymes, few months ago. I alternated them.

I also started Fenofibrate 7 months ago.

[hypnovoice]

Hi Gioielli, I am 81 and was officially diagnosed in 2019 about a year after I had open heart surgery with an aortic valve replacement and a triple bypass, although my alk phos tests were high prior to that.

[PatriciaHebrides]

Hi, I am 81 too. I was diagnosed 2010 with chronic itching for several years and after blood tests and a biopsy. I am an urso responder.

I also have an underactive thyroid , gluten intolerance, dry eyes and mouth.

I used to have blood tests every 6 months, now (since covid) every 12 months.

[rubberglove]

Hi. I'm 74 had pbc for 10 years

[alpha3]

Hi I shall be 83 in August, diagnosed in 2013 by accident. Have kept mostly well, but now have possible sjogrens as well, dry eyes, dry mouth, etc', take 750 Urso daily. Recently saw consultant after two and a half years interlude due to Lockdown, Keep going everyone, we all seem to be doing fine.

[JubileePenny]

I was diagnosed without symptoms in 2008. I am now 73 and doing

fairly well, although fatigue seems to worsened in the past few months.

[Lena2011]

Hi I’m 36 just been diagnosed very scary at my age 😢