Cholesterol: Hi all, my doctor wants me to... - PBC Foundation

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Cholesterol

kandiepat profile image
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Hi all, my doctor wants me to take statins because my cholesterol is - non fasting, 8. I heard that PBC caused high cholesterol and that taking Urso would solve that problem. I really really don't want to take statins - anyone else with the same problem? Thanks Kandypat

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kandiepat
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10 Replies
1978louisa profile image
1978louisa

Hi. I have high cholesterol too, but Dr reckons its familial cholesteroleamia (excuse spelling), as my aunt has it. Mine was at 8 and with in a month of taking the statins it was down to a normal level. I'm only 37 and I'm on all these meds. I'm also taking urso 1000mg a day and I have a hiatus hernia so must take a PPI everyday, sometimes twice......

I wouldn't worry about taking the statin, hey if it reduces having a stroke or a heart attack or had to be worth it, afterall we have enough to deal with having PBC!!

Good luck with it all!!

nickiwj profile image
nickiwj

Hi Kandypat,

My cholesterol has been tested only a couple of times in my 9 years of having PBC. Around 5 years ago, my gp prescribed me statins for raised cholesterol. My consultant who I've been under care with for 7+ years with my PBC has always explained to me that.....cholesterol with PBC works differently to a person with raised cholesterol.

My gp had prescribed the statins and then called me at home the same day. She had said she wasn't fully aware of PBC and the chemicals in statins could make me poorly to do with the liver enzymes. She instructed me to stop them immediately.

Just thought I would give you my experience with PBC, cholesterol and statins.

Good luck 💞

butterflyEi profile image
butterflyEi

Hi Kandiepat

I am on statins for familial reasons rather than high count because of PBC. Prof.Neuburger in a recent article in Bear Facts magazine wrote that statins would be his last line of defence. If you are alrwady a member of the PBC Foundation then back copies of the magazine can be accessed on line if you have not seen the article already. If not a member, membership is free and the members section has a wealth of information. If you have any difficulty contact the Foundation directly as they should be able to help.

For myself I showed the article to the doctor but she told me that I must stay on them however my wonderful step daughter who is quite knowledgeable on certain medical matters would prefer me to come off them because of the side effects that can occur.

Hope the above will help to clarify your thoughts.

Best wishes

IOW-gal profile image
IOW-gal

My cholesterol is fairly high and a specialist I saw at the hospital put me on a low dose statin but within about six weeks it had made my LFT's shoot up so it was decided I shouldn't take them. I try, very badly, to control my cholesterol with diet. I am failing miserably! My husband has taken statins for years due to heart problems and he blames them for all sorts of muscular problems. So my thought is and it's only my personal opinion, if you can do without them do.

spoul profile image
spoul

My cholesterol was 11 and I've been on 20mgs of simvastatin for 17 yrs with no adverse effects. My cholesterol is now about 6ish but consultant happy with that as they don't want me to have a higher dose.

Hope this helps 😊

janetfolley profile image
janetfolley

Hi I've had PBC for 12 yrs and my cholesterol on last blood test was 9.6 I have been on low cholesterol diet now for 1month get my results Fri. My GP will not give me statins as they are dangerous to liver enzymes, but I read a very good article in the mail that a new drug has been release to bring down cholesterol for people like us who can't take statins. Will follow up after Fri after I have seen my GP

Pea1234 profile image
Pea1234 in reply to janetfolley

Looking forward to hearing what the new medicine is. I also have high cholesterol.

chynablue profile image
chynablue

Hi! I just wanted to share my story too. My cholesterol had been borderline high for a long time. I was diagnosed with PBC and fatty liver disease in October of last year. I got real serious about my diet and started urso. My doctor said that if my cholesterol was still high, she would put me on statins. But she wanted to wait and see how things changed with Urso because a lot of times it helps bring down cholesterol levels. The liver regulates the amount of cholesterol in the blood, and when it is struggling, it can't always do a good job of it.

Cleaning up my diet reversed the fatty liver disease and the urso helps me digest my food better. A lot of my symptoms either went away or improved greatly. My blood tests all came back normal, including cholesterol and blood lipids.

I am very glad because statins can have some nasty side effects. I agree that statins should be used as a last line of defense. First line of defense should always be diet, exercise, and stress reduction for overall health.

One more thing - you don't always have to be on statins for life. Doctors can prescribe them as a temporary measure while people work on their diet and make lifestyle changes. As health improves, sometimes the dosage can be decreased and the patient can come off of them.

kandiepat profile image
kandiepat

TThankyou everyone who replied, it's been really helpful.

Tacnap profile image
Tacnap

I was on Lipitor for 3 months for high cholestrol my legs were so weak and muscle aches so bad I called the doctor after 6 weeks, he said add Coq10 and continue to take until I saw him again in 6 weeks. I knew the med was causing my problem, I would take it at bed time and by 5:00am when I got up the weakness was there,it would get better a little during the day, then start all over after taking the med the next night.bwhen I went to the doctor three of my liver enzymes were elevated. Which I had read from Mayo Clinic could happen when taking this med. Dr. Did not seem to know that, he said stop the statin. After 2 days of stopping I had no more leg weakness or muscle aches. I am changing doctors, lost faith in this one when he did not stop this med after I called him at 6 weeks. I read lot about statins and want to stay away from them.

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