Hi there.

[mjdecker47]

Hi. I'm Mary Jo. I was diagnosed 2 months ago with PBC after more than 5 years of telling doctor's that my bones hurt, I itched for far too many of those years with thoughts of suicide and telling my husband if I have to live the rest of my life like this, I would rather die. It was that bad. I guess my God heard that and the itch has diminished greatly. Not sure why because my levels continue to increase. Diagnosed with fatty liver first and told to diet, eat right and exercise. 46 lb weight loss, giving up all red meat, fried foods, and most bad carbs, my levels continued to climb. Then the trip to the gastro. One visit, AMA testing and boom, there it is. Dr wanted me to wait a couple more months, not sure why but I go next Friday for the start of medication, a biopsy or both. The fatigue, pain in my upper stomach/liver area feels full and uncomfortable. Thank God I found you fine folks. I'm 55, a recovering addict/alcoholic with almost ,26 years clean. I guess I'm just sad. I'm also a substance abuse counselor who works in the male prison and I see them getting better care, expensive meds for their liver's and here I am having to rack up medical bills and fight the insurance company. Sorry guys, I'm just venting. I promise I will bring more than complaints. God has been good to me and I know whatever happens, it will be his will. All I have to do is suit up and show up. Thanks for listening.

[Bama_girl]

Pray your itching subsides, and pray you get a good report on your biopsy and start on the necessary medication ASAP. God bless you!! 🤗 hugs from Alabama

[Hidden]

Hi Mary Jo,

I’m glad you found us! You will get nothing but support on here so you are in the right place.

I’m so sorry your journey to diagnosis has taken so long, I’ve read that many people go years and years coping with symptoms before further tests are done and a diagnosis is made. At its worst the itch is something else, it’s indescribable, thankfully I don’t suffer with it too badly at the moment but before I was diagnosed I was itching terribly.

I’ve been diagnosed almost 2 years now, I see my liver Dr tomorrow to find out if the medication is working or whether we try the other one too, not that there is much choice.

I take it you are from the US? We don’t tend to have biopsies here so I’ve never had to have one. It must be so difficult when you have an illness to factor in the financial implications, God Bless the NHS in the UK, yes we pay for prescriptions but it’s a very low cost.

I hope everything goes well for you, like I say everyone on here is really supportive and know just what you are going through with regards to PBC.

Take care xx