Our Drugs

[gwillistexas]

There have been a lot of mixed thoughts on some of our drugs for PBC. But at the end of each day, what really matters is that we’re all still here to send understanding, love & support all around our PBC world. 💞🥰

[gwillistexas]

So true. We pay our drs for treatment & guidance. They are doing the best they know how with this disease. And like you say, if we feel they’re not, then we should take our best interest to heart & move on. 😊

[Arlie]

Exactly 😘

[cocotte5]

thanks! this is so true! [pbc since 2002] f2 just had my 1st fibroscan in sept ,im doing good just retired 4 months ago!

[gwillistexas]

I’m convincing myself as I wait for hepatologist to arrive, that my GI probably should have done something more than labs. Of course I understand he is slightly limited since I’m self pay at this time. But there are different lab tests he could have done, another ultrasound just to look at things. After my last fibroscan, fear has been building in my mind that OCA May have caused my liver harm. So I make myself continue taking it until hepatologist says different. So yes, I’m scared.

[gwillistexas]

Honestly I have seen my GI one time. I have seen his NP regularly & she is great. She is very knowledgeable & on top of everything. I trust her wholeheartedly. When I saw her last, she stressed that she & my GI were not concerned about bump in fibrosis but because I’m on OCA, they felt a hepatologist might offer something different in the way of treatment. And knowing me & how I worry, she felt I might be more at ease with the hepatologist & let him explain things to me so I won’t worry so much. I’ll admit, I’m a handful at best😅

[Ellyne]

You need to take the fibroscan result with a grain of salt. It isn’t 100% accurate. So there is a strong possibility that your worry about your meds causing your situation isn’t true. The med you are on has side effects. You are not experiencing that. You have a lot of good stuff in your corner! Wishing you well with the new doc.

[gwillistexas in reply to Ellyne]

You’re right. I need to just let it go & let hepatologist figure it out. Thank you😊

[gwillistexas in reply to Ellyne]

Ellyne...on the subject of Ocaliva, I received an email from Intercept. The 2018 annual meeting of AASLD will be November 9–13 in CA. They will be presenting new data. Hope to hear good things😊

[Ellyne in reply to gwillistexas]

Me too.

[PBCRobert Partner in reply to gwillistexas]

I am here at AASLD so looking forward to what comes...

[gwillistexas in reply to PBCRobert]

Awesome! I’m anxious to hear🦋

[Ottley3 in reply to gwillistexas]

I am coincidentally going to be in San Francisco Sunday - Tuesday for business (unrelated to health care or the AASLD) I will be tempted to ask every doctor in the elevator about my PBC. Here is an article about AASLD:

bloomberg.com/news/articles...

[gwillistexas in reply to Ottley3]

Ottley3...that’s great! Maybe you can come back with helpful info😀

[Ellyne]

You’ve got this!

[gwillistexas in reply to Ellyne]

Thank you😉

[SunnyXXOO]

Anger here, for what? Let it go!!! Not worth putting your body through.

It really helps to be stay positive, happy and grateful for what we have.

Last thing I wanted to do was to upset anyone.

BUT ! The posting I put out there are cold hard facts, it’s better be informed then uninformed.

Sunny

LOVE, PEACE, GRACE, GRADITUDE, LIGHT

SAT NAM 🧘‍♀️ 🙏

(seed of truth)