New Diagnosis

[NativeJax]

Hello, 51 female from Florida PBC diagnosis confirmed yesterday and already Autoimmune Hepatitis patient 2016. I was told stage 3, 2nd biopsy in 3 years. I came for information, support and feedback. I would like to know what to expect.

[Kakey]

Hi NativeJax. I was diagnosed with PBC this week too. I was originally diagnosed with AIH, but it was changed to PBC after biopsy.

I don't know what to expect either, but I've joined the pbc foundation, which my consultant recommended me to do. They seem to be the go to for information.

Best wishes.

[Wocket]

I was diagnosed 3 years ago and I’m fine so don’t worry. Kasey is right when she says you should joint the PBC foundation as they have the best information and its free.

[butterflyEi]

Hi and welcome to the group. I was diagnosed in 2006, probably had it in the background at least 10 years prior. Now in my upper 60s and have learned a lot over the years as I am sure you will also. Although we all share the diagnosis of PBC many of us will have different symptoms at different times but one thing I have learned over the years is not to assume everything is PBC. Unfortunately auto immune disease does not come alone, many of us have 2 or 3 or more. The PBC Foundation is a terrific source of up to date accurate information and once you have joined you will find the member's section of the web site has a lot to offer. There is also an App which is a handy way to transport information should you decide to upload your information.

Lots of personal experiences can be shared on here so ask away if you have any questions.

kind regards

[recipes in reply to butterflyEi]

I agree with you butterfly ELI. I am having trouble with lots of soreness in my upper legs when I go to get up from setting. some times it is a lot better, then back again. I am wondering what is safe to take with pbc and also could this be a side effect of urso. Good luck.

[lilygrower]

Hi Native Jax and Kakey,

Welcome to this support network. I felt so unsure of what to expect when I was diagnosed in November of 2018. I've learned a lot from this group here, and have had many questions answered. But the most important thing I have gained from being a part of this group is that we are all in this together. We can live with PBC, we might be more tired and we have side effects from the medications as much from the autoimmune condition, but we can live and live well. It is important to eat a clean simple diet of the healthy foods that you can eat, and exercise to the extent you can tolerate!!

(Also, to Recipes, I also have the cramping and pain in upper legs when I get up from my desk after sitting at the computer. Not sure if it is a side effect of Urso or not, but we will press on!!)

Take care all and welcome!!

[Michi1]

Welcome fellow Floridian! Where do you live? I'm in Miami and have been on this journey for about 5 years now.

First, don't freak out. What we see online looks so scary but the fact is if you respond to Urso you are likely to live a perfectly normal life. The blessing is that they found this now and didn't continue to treat you for AIH. If you have overlap syndrome that has some intricacies. I feel pretty lucky to have found one of the best doctors in the country for this disease at UM. Her name is Cynthia Levy.

My personal experience is that living a healthy lifestyle (exercise, manage stress, eat a healthy, whole foods diet with lots of veggies) has been really good for me.

[NativeJax in reply to Michi1]

Thank you! I am in Jacksonville and I do have overlap. I was diagnosed with AIH in November 2016 and now this, I just started the URSO today so hopefully no side effects....we will see.