Cholesterol

[gwillistexas]

I was on a statin approximately 4 years. Now, they're holding me off from taking it. So now I'm worried about cholesterol levels. And had just gotten my HDL up to 60...then PBC. Does anyone else have high cholesterol or did you have, prior to PBC diagnosis? I've also read these PBC meds can cause an elevation. Scary

[butterflyEi]

Hi gwillistexas

I have been on statins for a long time because of family history of heart disease. My PBC diagnosis came after statins. It seems that many people with PBC have naturally elevated cholesterol levels. I believe Prof. Neuburger wrote something about this in an article in one of the back copies of the Bear Facts magazine which can be found in the member's section of the Foundation's Web site. Free to joun if you have not yet done so. Apologies but I cannot remember which one.

Make sure you get regular blood tests while you are making this change.

Best wishes

[gwillistexas in reply to butterflyEi]

Yes I am a member. I see my GI in November & I think he said labs at that time. Thanks!

[gwillistexas in reply to butterflyEi]

So, are you still taking statins?

[butterflyEi in reply to gwillistexas]

Yes

[gwillistexas in reply to butterflyEi]

High cholesterol runs in my family also. I do remember reading before I started Ocalivia, that it has the potential to drive HDL down. Not a good thing.

[butterflyEi in reply to gwillistexas]

I do not know anything really about Ocaliva other than it is new and proving very useful. However I think they had quite a good website where I am sure they wld be happy to answer your questions if your GI cannot clear this up for you. I have a sketchy memory of there being a phone number but for the USA where it was first approved.

[gwillistexas in reply to butterflyEi]

I have news release article in my phone when it was approved by FDA May 2016

[Ballymahon2 in reply to butterflyEi]

My pbc came after statins wonder is there a connection

[gwillistexas in reply to Ballymahon2]

I don’t know. When my dr put me on statin about 5 yrs ago, I put up a hard argument. He told me, if statin raises enzymes, normally they come back to normal when statin is stopped. My aunt had that happen to her, so when she stopped statin, enzymes returned normal. They took me off. Retested after couple weeks, enzymes still up. That’s when they tested further & determined PBC when Mitochondrial M2 was high.

[Pat_H]

I was under the impression that people with compromised livers should be wary about taking statins.

[gwillistexas in reply to Pat_H]

I think you may be right. My GI said he would just have to wait & see my labs next time.

[LKoewler in reply to Pat_H]

I was taken off statins shortly after I was diagnosed with PBC. My cholesterol was high when I had my labs done at next check. I was put back on statins 3x week. Better labs but still elevated and good cholesterol was low and bad was still too high. Put back on statins full time after talking to primary care, endocrinologist and liver doctor. All felt benefits of statin outweighed liver issues.

[gwillistexas in reply to LKoewler]

Helpful info. Thank you!

[Ballymahon2 in reply to LKoewler]

Helpful info thanks

[gwillistexas in reply to Ballymahon2]

You’re welcome 🌷

[teddybear7]

I've been told that it's the good ones that go up with PBC x

[gwillistexas in reply to teddybear7]

Oh wow! I sure hope that's true. Tks! 😊

[Ballymahon2]

Gail i was on statins for 4 years approx wonder has this some bearing on my pbc

[Hidden]

I am on statins..Hepatologist suggested that I go back on it after I stopped it (with agreement from my GI primary doctor) post PBC diagnosis. Hepatologist said it was safe to go back on it. I consulted with both my primary doctor who is also a gastroenterologist (though not a Hepatologist) & a cardiologist and they both concurred to go back on it. Pre PBC, was taking 20 mg daily. But since changing lifestyle, cardiologist recommended 10mg every other day. My Hepatologist monitors my cholesterol as well as everything else he deems important, like vitamin D levels. I see him every 3-4 months.

[gwillistexas in reply to Hidden]

Thank you I’ll be checking soon to see if I can start it again. 🦋