PBC and Cholesterol: I am newly diagnosed... - PBC Foundation

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PBC and Cholesterol

Itsmecork
Itsmecork

I am newly diagnosed (June, 2018) with PBC. My liver enzymes were through the roof (800+). I had a emergency gallbladder removal in May- but symptoms did not resolve - hence further testing and diagnosis of PBC. My cholesterol is insanely high - almost 600. My doc told me that I cannot take cholesterol lowering meds because it is so hard on the liver. I have been placed in the “moderate” stage of PBC based upon my biopsy. I have severe pain in my liver - almost daily. Hurts in my back and shoulders as well.

Any clue/suggestions on how to get cholesterol down without meds? My cholesterol was 198 a year ago, so you can see how it has spiked. Thanks!

32 Replies
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About your cholesterol, you may want to listen to Dr Robert Gish, liver specialist who speaks st all the pbc Roundtable discussions. St the last conference I Houston, he talked about cholesterol. It used to be considered taboo but it has been proven statins are anti inflammatory, anti fibrotic, & anti cancer for the liver. He prescribes statins for his patients. I take a statin as others do also.

I’m curious. Did he mention any statins by name? Are they all safe for us with pbc?

Dr Gish said he prescribes Pravastatin. You would really like this dr if you can listen to him. It was the PBC Roundtable discussion, May 17th, Houston. I he is awesome. There were many speakers there but I keep up with Gish.

Thanks. I’ll look him up and see what I can find. I’m in Indiana.

You will be impressed. Wish he were my dr. 😊

My hepatologist suggested that I go back on lipitor (stopped it with approval by my primary care doctor when pbc was diagnosed) as the cholesterol was kind of high. He said it was perfectly safe to do so. I consulted with my primary care doctor & a cardiologist as well. All 3 of them agreed that it would be better for me to go back on lipitor.

That’s sort of how it happened with me. I’m back on statin since Jan or Feb. internist & GI agreed on it. 😊

Are you living in ireland there is a support group in ireland which may be of help to you

Hi Itsmecork

I have been on simvastatin for over 15 years without any ill effects. As gwillistexas has said the PBC Roundtable discussion on You Tube is very informative. There is also an article in a back copy of the Bear Facts magazine on the PBC Foundation web site (free to join) by Professor Neuburger where he discusses the use of statins. I do not remember which issue but it was certainly a good couple of years ago.

In the meantime eat a lot more fiber-rich foods (especially soluble fibre from foods like beans, oats, barley, fruits, and vegetables). I have porridge oats in some way every morning for breakfast. There is a very good article which you may like to look at:-

health.harvard.edu/heart-he...

Great info 👍😉

butterflyEi...I meant to ask, your labs have not been affected by statin? As far as causing any of your levels to increase? The one thing my GI stated to my Internist , was as long as my numbers don’t increase on it.

gwillistexas whilst on holiday this year I took the opportunity to have private blood tests done one month apart for my cholestorol.

The first draw showed HDL 40.6<40-80> and LDL 122 <0-100> The second blood draw having had no statin for the month showed HDL 42.2 same parameters and LDL 129 again same parameters. As I live in the UK and have no direct access to laboratories I decided on this little experiment in Cyprus where laboratories are easy to access. I am no doctor but this little exercise I believe showed me that I need to stay on the statins as much as I would like to have one less tablet to take :-)

I fully appreciate that higher than normal cholesterol is common with PBC but as I have a family history of heart disease and having asked 3 separate GPs if I could come off the statin and the answer has always been to stay on them I guess my little experiment proves them right.

best wishes

Thank you so much. My drs agree as well. We will be fine doing what we’re doing. 😉🌷

Same here on the statins. I even paid out of pocket to get a coronary calcium scan done which measures the risk for the heart. Though it was normal, cardiologist said given family history etc, should be cautious & re-start the statins.

I had that test also. Slight trace. If slight trace is all I have after all my years of high cholesterol, I’m pleased. 😊

My score was 1 point higher than my Internist. He doesn’t smoke, never did. He’s looks like he works out every day & is also part owner of a fitness gym. He definitely healthy. He also take simvastatin. So there😃

Excellent!

I flat refused to start it few years ago. When he told me he takes it, I gave in. I had tried the diet changes with zero results. So here we are. Can only hope for the best🤗

I didn’t take it for a while after being diagnosed with pbc. It took 3 doctors to convince me. Plus I was practically a vegetarian & it didn’t work. Even with the meds, I still have to watch everything I eat.

I guess we have to find our individual happy medium. Sometimes I wonder what that is😅

I was told by my doctor that higher than normal cholesterol is common in people with PBC but it does not correlate to heart problems in us and is not something to worry about. You may be able to bring it into a reasonable range with lifestyle changes.

In the U.S. the pharmaceutical industry drives healthcare and they keep lowering the “healthy” range for cholesterol and putting more and more people on statins. Meanwhile, statins have a lot of really bad side effects you don’t hear a lot about. One common one in men is it can lower their testosterone levels. My mom was taken off of them when she experienced muscle pain, and was told by a pharmacist that the muscle pain was a sign that the muscle was actually being broken down by the statins, and then he pointed out your heart is a muscle.

Try a mostly plant based diet lower in red meats. Eat eggs, fish, chicken, a wide variety of fruits and veggies, and a small amount of healthy fats every day, avocado, coconut oil, ghee, nuts. You need fat to absorb certain vitamins. Exercise regularly. You’ll probably knock down your cholesterol, get in great shape, and look and feel amazing!

If you need help making these changes, don’t hesitate to reach out. I’m a health coach (a career change brought on by making drastic changes myself and wanting to learn more and share that knowledge with others). I would never say not to take a medication if your doctor is advising it, but you may be able to eliminate the need for a cholesterol lowering drug with a healthy lifestyle.

gwillistexas
gwillistexas
in reply to Michi1

I think we might all agree with some of this. But there are those of us who can not control cholesterol due to our genetic makeup. Yes, it is well stated these pbc drugs as well, can drive cholesterol & especially drive the good HDL down. It becomes a decision our personal drs have to make when benefits of statin outweigh the risk, if any. Lifestyle changes don’t help some of us.

Michi1
Michi1
in reply to gwillistexas

I understand and like I said would never advise anyone to go off a drug without consultation, but we need to be careful.

gwillistexas
gwillistexas
in reply to Michi1

Careful as with all drugs. Statins are now proven safe with pbc. 😊

Michi1
Michi1
in reply to gwillistexas

On that, we can disagree. They may not cause liver damage but I’m not sure they’re safe for anyone. The best any of us can do is learn all we can and make educated choices. My personal method is to consider side effects and do everything I can with lifestyle changes before taking any drug, then consider whether the drug really is the best way to get the effect it gives, and whether the side effects are worthwhile. There are a lot of cardiologists questioning both the safety and the value of statins. Not all doctor’s are making their patients aware of the risks. Once aware, then we can make an informed decision.

I would like to reiterate that taking statins is in addition to exercise & practicing healthy eating habits. I still need the meds because lifestyle changes were not enough. I was not on statins for 1.5 years & then went back on it because the cholesterol was getting too elevated.

Same here👍

I have been on statins for years. I had slightly elevated liver enzymes and was told that this was caused by Lipitor and the benefits of the drug outweigh this particular problem. My gastro did further testing and I was diagnosed with PBC. I decided to come off Lipitor for 3 months and get retested. At the same time, I started Urso. In 3 months my cholesterol shot up and so I went back on. 3 months later another test and down to 175. All liver enzymes in range because of Urso. Conclusion: I need both drugs and they are working for me.

I have PBC and Autoimmune Hepatitis, my Hepatologist put me on Cholestyramine to reduce my cholesterol over 7 years ago. It has worked tremendously well, and is not a statin. You might want to talk to your doctor about this medication. By the way, it also stopped my itching.

My drs have me on simvastatin. It has not affected my liver enzymes at all.

Encouraging. Thank you🦋

Try and keep your good cholesterol at about 2

I find eating as much olive oil as l can. To cook with a good spread on salads.

Need cold compressed.

Hi anyway l am Colleen and at what seems about the same stage as you

I to get the same pain most days and will go to the left l think the spleen at times. Do you get much swelling yet. I don't most of the time but go through times when l get tired l think. All the best corkygirl. How old are you if you don't mind me asking

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