Statins and PBC

[CaptainB]

I’m male and was diagnosed with PBC 12 years ago. I’m broadly asymptomatic but because of raised cholesterol levels (caused by PBC?) have recently been prescribed statins. I’ve read that statins shouldn’t be taken by anyone with liver disease and wonder if others have experience of this.

[Oidra]

I have been taking statins for a few years now without any problems. I was diagnosed 22 years ago and am now 82

[CaptainB in reply to Oidra]

Thanks for that Oidra. It’s good to know.

[butterflyEi]

i have been taking Simvastatin for over 10 years. This subject was queried by a student doctor present at one of my appointments with the specialist. He said they were OK to take.

[CaptainB in reply to butterflyEi]

That sounds very positive. Thank you.

[janetfolley]

I also take Simvastatin 20g per day forthe past 6yrs.I checked with my GP as diagnosed with PBC 18 yrs ago and perfectly ok...m

[CaptainB in reply to janetfolley]

That gives me some confidence. Thank you.

[Jlruggie]

diet and weight lifting and cardio work should work instead of drugs

[CaptainB in reply to Jlruggie]

I do follow a good diet and I’m quite fit for my advanced age. Not sure I could take on weights though!

[CeeCee101]

I take statins but went through 5 brands as they kept elevating my LFT. Am on generic Lipitor now BUT only 4 days per week, if I take more than that LFTs go whack. Talk to your doc, mine said even taking a statin once per week is beneficial.

[CaptainB in reply to CeeCee101]

Thanks for the input. I shall keep tabs on my LFTs.

[ritarobainapbc]

Hello , I am taking atorvastatin and my lfts are good so far. My Doctor has told me that it is important to keep cholesterol under control , because the cholesterol is also processed by the liver .

[CaptainB in reply to ritarobainapbc]

Good point. Thank you very much.

[gwillistexas]

I took simvastatin approximately 4 years then was changed to generic crestor. No problems for me with the liver.

[CaptainB in reply to gwillistexas]

Thank you. That’s good to hear.

[Cressy]

My GP put me on statins and after raised LFTs my consultant told me to stop taking them. Now waiting for next blood test to see if it has made a difference.

[CaptainB in reply to Cressy]

Thanks for sharing that Cressy. I shall be interested to see the results of my next blood test too.

[Sadie9476]

I take Respator injections every two weeks. It doesn’t go through the liver. I’m stage 4 PBC.

[Sadie9476]

sorry, I meant Repatha injections, not Respator- don’t know where I got that (fuzzy brain maybe?)

[CaptainB]

Hi Sadie, I had to look that one up. Are you statin-intolerant or were statins affecting your LFTs?

[ninjagirlwebb]

My hepatologist: "it is perfectly safe to take the statins with pbc." He checks LFTs quarterly which you should do when on statins regardless of pbc status.

I would recommend going with the lowest dosage that brings the cholesterol down to desired levels before just doing a high dose. Start with 10 mg for 3 months and if that does not work step up to 20 mg etc. Ideal cholesterol should be under 200, ldl with out risk factors should be under 130, if there are risk factors 100; HDL >50, and tricylerides within the range.

[CaptainB in reply to ninjagirlwebb]

Many thanks for your detailed reply and advice. I normally have bloods taken every 6 months but will now request 3 months. You sound very knowledgable, are you in the medical profession?

[ninjagirlwebb in reply to CaptainB]

Thank You. I just happen to read a lot of research since being diagnosed with pbc. Plus I ask my doctor a lot of questions and since he teaches medical school, he explains everything in detail.

[Zelda5]

Also you can look into taking in more fiber and fish oil. I think they can help lower cholesterol too.

[CaptainB in reply to Zelda5]

Thanks Jean.

[Knackeredknowle]

Hi, I'm not fully responding to Urso so been taken off this by consultant and placed on Benzene (statin) three times a day.My awful symptoms I was getting on urso have also disappeared and I'm coping better with all my medication.

In regards to cholesterol I blame my liver for all my complex heart conditions and from 2019 when diagnosed with pbc have 4 stents to the LAD in four years - now talking bypass procedure.

In my experience its managing the risks and they (medical professionals) have the knowledge and expertise to help you.

I just wish they were a little more upfront so we can be participating in our care.

[CaptainB in reply to Knackeredknowle]

Really glad to hear that things are improving for you. I too like to know what’s going on!

[Knackeredknowle]

😀 yes think it's important we are fully informed about our health. We can then make informed decisions

[Jeremy72]

I was told by my Hepatologist no to Statins and was put on Fenofibrates.

[CaptainB]

That’s interesting, thank you. I hope they are working.