Is anyone out there with pbc over 80?

[Jlruggie]

Is anyone out there with pbc over 80?

[Oidra]

Creeping that way, 77 next month !!

[Jlruggie in reply to Oidra]

How are you doing? What medicines do you take?

[Oidra in reply to Jlruggie]

Ursofalk on prescription, also cod liver oil, calcium and Q10 by choice.

I am one of the lucky ones with few symptoms and can lead a normal life. For the last 5 years it has been my fit husband who has had serious problems and I was once put on a plane with him described as " his carer". Life doesn`t always turn out the way you expect!

[Jlruggie in reply to Oidra]

Helooo Oidra!

I'm lucky too health wise, I have no symptoms either. I take 3 tablets of Ursodyoxycholine, fiber, probiotic, vit c, calcium and methanamine daily. The last 4 are for recurrant UTIs due to probably a malrotated kidney. I do 1.5 Yoga classes daily, lift weights and either bike or run every week. I'm 60 in July. My live together boyfriend is 40. We've been together 3 years. Recently he's afraid of getting more attached as I will die prematurely of Pbc and leave him alone. It's lame and very likely because he simply doesn't want marriage but there it is. I have read life expectancy is 78, just wanted to see how many of us have no symptoms and how many of us are over 80. Thanks for your reply. Any info or tips from anyone is welcome!

Jlruggie

[Wocket]

My specialist told me about a lady that died aged 103 and she didn't die of PBC. I'm planning to breaking the record and going for 104 😄

[Rockie]

Jlruggie. I am 76. Since 2008 diagnosed, but must have had PBC for many years prior. AI started using chronic medication for Thyroid. Only discovered 2008 that Auto Immune is the cause of it

[Rockie]

Jlruggie. Sorry half of message disappear (sign of old age, hey,hey) I started using Eltroxin for thyroid at the age of 40

[JaneIng in reply to Rockie]

Rockie, your doctor told you that PBC is the cause of thyroid issue. Did you stop the thyroid meds then?

My doc seemed to think thyroid issue caused elevated AMA M2.

[Rockie in reply to JaneIng]

Janeing. I will have to be on medication for thyroid for the rest of my life. We just have to monitor it. Sometimes its under active and then hyperactive. I also will have to use Ursotan (that is what it is called in South Africa) for PBC forever

[JaneIng in reply to Rockie]

Thanks Rockie. I am on Armour for my thyroid problem. Synthroid causes my liver enzyme to go up. Not on Urso yet. Maybe the new doctor will give it to me.

[gwillistexas in reply to JaneIng]

Janelng...does Armour keep your thyroid in balance? I have been on synthesis in the past & levothyroxine for several yrs. cannot get it balanced & keep it there. I had lab today & ifits off again I’m asking for a change in drug. I have read years ago that Armour is the best.

[JaneIng in reply to gwillistexas]

Armour did help me. Synthroid did not. Synthroid also caused my liver enzyme to go up. My doctor did not want to give me armour in the beginning but after seeing my liver enzyme kept going up he agreed to switch me to armour. So far so good....

Best luck to you.

--Jane

[gwillistexas in reply to JaneIng]

I know Armour is ancient🤣 but something has to change. Thank you.

[susanburgess]

I am 77 had pbc for appr 20 years

[LKoewler in reply to susanburgess]

After having PBC for 20 yrs, what is your current state of health? I am 54 and worry that in 20 years I will be too old to receive a transplant if needed. Just wondering if after having PBC for 20 yrs I will still be healthy enough and not ever need one. Hoping that is the case with you!

[Maur22 in reply to susanburgess]

What is your key to success in treating the PBC? Please do share.

[ritarobainapbc]

MY GP told me that she has a patient 92 years old and among her illnesses has PBC. I have no idea how many years has had PBC