PBC and Cholesterol

[Carly92]

My total cholesterol level has shot up to 6.39. My internist wants me on a statin (Atorvastatin) with it's many negative side effects. I've been researching other cholesterol lowering medication options and many sites (including the Mayo Clinic) list bile acid sequestrants - including Cholestyramine and Colesevelam as being effective. Anyone here on these drugs for cholesterol? Any tips or advice?

[gwillistexas]

I took simvastatin for 4 or 5 years then it wasn’t working well. I have been Rosouvastatin (Crestor generic), for almost a year. No problems and it keeps cholesterol normal.

[Carly92 in reply to gwillistexas]

Thanks gwillistexas. Glad you haven't had problems 😊

[gwillistexas in reply to Carly92]

You’re welcome. None to my knowledge anyway. I hope you do well. There are different statins if for some reason you can’t take that one. Sometimes I think everything is trial and error with PBC. I bet you’ll be fine 😊

[Carly92 in reply to gwillistexas]

I hope so. I'll stay positive. I don't want to risk heart disease or stroke on top of everything else : )

[gwillistexas in reply to Carly92]

For sure. You take care🙏🏻😊

[ninjagirlwebb]

I am on Atorvastatin and my hepatologist says it is perfectly safe to take.

[chrisj in reply to ninjagirlwebb]

thats the one my gp prescribed for me

[Carly92 in reply to chrisj]

Thank you ninjagirlwebb and chrisj 🙂

[JaneEyre55]

I've been taking Cholestyramine for over 10 years, no problems. My Hepatologist won't let me take statins because they are processed through the liver which is a bad thing. Biggest issue is I have to take it 4 hours before/after any other medications. Worked with a pharmacological to make sure I take all my medications at the correct times.

[Carly92 in reply to JaneEyre55]

Has the Cholestyramine helped with your cholesterol readings?

[YummyBear]

From my experience I was prescribed Simvastatin 18 years ago, which caused much aches and pains. I was then put on Atorvastatin, but same side effects. In UK the statin Rosuvastatin (5mg once daily), had to be approved by medical council to justify the reasons why my Doctor wanted me to take it, as it was a costly medication. I have been on it for 10 years, no side effects at all. Hope this helps.

[Carly92 in reply to YummyBear]

Good to know. Thanks YummyBear.

[butterflyEi]

I also am prescribed Rosuvastatin with no side effects.

[Carly92 in reply to butterflyEi]

Thanks butterflyEi

[RunningRabbit7007]

I take colestyramine for PBC related itching, have used it for a year now and my cholesterol is still 6.4 no changes at all. Last week the PBC Foundation Q&A were saying PBC can cause a 'false' high cholesterol reading and I saw my hepatologist this week who confirmed this as my GP was trying to push me to take statins.

[Carly92 in reply to RunningRabbit7007]

Good to know. Have you made changes to your diet?

[RunningRabbit7007 in reply to Carly92]

No I didn't need to, I've been on a Mediterranean diet for over thirty, years, stopped alcohol Aug 2023 and am not overweight. My hepatologist has increased my colestyramine to two a day as I'm having awful bouts of diarrhoea which he says is due to the cholestasis. Be interesting to know if the increase in dose does anything for cholesterol levels!

Hope you find a solution soon ☺

[Carly92 in reply to RunningRabbit7007]

Thanks RunningRabbit7007. I tried Cholysteramine for itching but it didn't work after a while. But I would go back on it if the drug helps with cholesterol. My pharmacist says there's a world-wide shortage of it until the fall. He says he can give me Colesevalem which is similar. I'm trying the Mediterranean diet now, plus exercise. Gave up wine a few years ago. Will see how it works after my next blood test.

[JWJD]

I am taking fenofibrate for my PBC. It has normalized my AlkPhos and lowers cholesterol. I also have not experienced any side effects.

[Carly92 in reply to JWJD]

I was on fenofibrate for my itching but I didn't do well on it. Glad it's working for you JWJD : )

[chrisj in reply to Carly92]

My GP told me to get antihistamine tablets for itching. I was ill with a virus and what they thought was a problem for my liver. Never had itchiness like it..doc told me to buy a oacket of antihistamines. Different problem I know buy they helped and they're not expensive.

[Carly92 in reply to chrisj]

I tried antihistamine tablets but they just knocked me out and left me feeling awful in the morning. Glad they work for you chrisj : )

[chrisj in reply to Carly92]

thanks Carly, sorry they didn't do the same for you xx

[pbc-zero in reply to JWJD]

Works for me ad well

[DonnaBoll Administrator]

I would certainly have that conversation with him about how you feel. Show him the article you were referring to. Making just some dietary changes possible to start with. PBC does increase our cholesterol - but not the 'bad' kind.

Typically, there is an elevation of the HDL and PBC patients in fact have a lowered or normal LDL. If the elevation is in HDL only then do patients absolutely do not need cholesterol lowering treatment.

This is from Dr. Jones' book. The Definiitive Guide for Patients with Primary Bliary Cholangitis.

[Carly92 in reply to DonnaBoll]

Thanks DonnaBoll. I have Dr. Jones' book - a must read for those with PBC. Unfortunately, it's the bad cholesterol that is elevated.

[DonnaBoll Administrator in reply to Carly92]

Do you feel dietary changes might at least be worth a try first?

[Carly92 in reply to DonnaBoll]

That's my plan. I'm following a cholesterol lowering diet and walking and doing some weights every day. I'll see what my blood test shows in October. Fingers crossed 😉

[DonnaBoll Administrator in reply to Carly92]

let us know... it's so important for women especially to do strength training. I need to be better about this.