Stages

[KevinHall10_]

Just curious, at stage 2 , but my alt have went down after taking oclavia for now my 3 month. Can a person go to the next stage, even at that? I worry, because i know i have had this pbc longer than they first dx. Me

[Hidden]

How long have you been diagnosed for

Do you know your enzymes

[LStonelli]

Are you having any side effects from the Ocalvia? Did u ever take Urso?

[KevinHall10_ in reply to LStonelli]

I am on both now.

[Hidden]

Hi KevenHall10_

PBC is a progressive condition, and as such will continue to progress, albeit slower, if you have responded to the meds - Urso, and or, Oclavia.

I was diagnosed 29 years ago, and have been on Urso for around 22 years. Urso brought my enzyme levels down to near 'normal' very quickly. When first diagnosed I had a biopsy, and then another 5 years later, both indicated Stage 2, since then I have moved into Stage 4 without any significant change in my enzyme levels.

Having said that, it must be said that we are all different, so will experience PBC in very different ways, especially progression wise - some will progress at a snail's pace while others wont. PBC is a very unpredictable condition.

So, try to stop worrying about something that can't be changed (at the moment) and get on with life.

Take care

Di

[KevinHall10_ in reply to Hidden]

Thank you for ur input. Its taken u awhile to get to stage 4. How do they know if u are in stage 4 ? How was it determined?

[Hidden in reply to KevinHall10_]

I began to feel more unwell about 7 years ago so my GI ordered an ultrasound which showed cirrhosis, then a subsequent fibroscan confirmed it.

Di

[KevinHall10_ in reply to Hidden]

Thank you. Do u think you will get a transplant?

[Hidden in reply to KevinHall10_]

No, I won't be considered for a transplant as I've passed the cut-off age (70) here in Australia.

[KevinHall10_ in reply to Hidden]

U are a true inspiration, thank you

[gwillistexas]

From info I have researched on PBC, I believe they say we can have this as much as a decade before it is found. Maybe someone else has more info. I am also stage 2 fibrosis, so if there’s any truth of having it long before diagnosed I guess we’re not in too bad a shape. We just take our meds & pray for the best 🙏🏻

[KevinHall10_]

Thanks

[LStonelli]

Do you take any pain medication?

[KevinHall10_]

Sometimes, i have a liitle left. My primary care doctor refuses to give me any , inless i go to pain management. I refuse to go, because i only use the med when i need it. My insurance has a 6,000 dollar dectuable,so i usually take ibprofin and flexeral. Only pain med when i absolutely need it. I also have 3 disk in my back that are bad, so thats a lot of pain just there.

[Hidden]

Hi Kevin. I believe you are wise not to go to the Pain Clinic as they prescribe drugs that are harmful to the liver. I'm allergic to aspirin, afraid of Tylenol and was told to never take Ibuprofren because of my high BP. Flexaril knocks me for a loop and makes me sleep and is not good for our liver. I've had three back surgeries, a cervical fusion, knee repair and sometimes have the URQ pain. Biomor Curcumin is my go-to for any pain or inflammation and I've been using it for years. I will only use Biomor Curcumin because of it's purity and it has no pepperine. Other brands say pepperine is a necessary additive, but that is not true and we don't need it in our bodies either. Curcumin (Tumeric) is also known for helping to repair the liver. You can go on line and research Biomor Curcumin and also other brands. Please remember, when researching supplements, many manufacturers do not use the proper amounts or strengths of the main ingredient in their products and sometimes use harmful and/or unnecessary fillers. Curcumin is NOT recommend for those taking blood thinners. I hope you can find some relief soon. Best Wishes, W.