PBC & Statins : I was just wondering if... - PBC Foundation

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PBC & Statins

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I was just wondering if anyone takes statins as well as Urso. I stopped taking my statins once I was diagnosed and put on Urso. I have read that statins aren't good if you have liver disease. What are your thoughts and what where you told by GP and/or Consultant

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19 Replies
emerich profile image
emerich

Hi essexmike, I was put on statins after a heart attack,80mg atorvastatin. Then found to have pbc. After 14 months of trying different tablets and doses I was eventually classed as being allergic to statins, because of the adverse effect on my liver.Also unable to take urso because of severe allergic reaction after 7 days on it. I am now on fenofibrates as a replacement for statins. Not as good at dropping cholesterol levels but better than nothing.

LKoewler profile image
LKoewler

I take statins , am currently on Ursodiol and have PBC. I was taken off them by my family doctor due to achey legs and my liver, but my gastro/liver Dr. at the Cleveland Clinic said he disagreed with taking me off statins. I am also diabetic and he and my endocrinologist both felt it was more important to keep my cholesterol lower. I will follow up about it again at my next appt. I take statins 3x a week for now, which helps with the cholesterol and keeps the aches in my legs under control. The achey legs are a symptom I experience from taking statins.

butterflyEi profile image
butterflyEi

Hi Hidden

I take statins. I have now asked two GPs if I can come off them. I have a family history of heart problems and both GPs at two different surgeries said no. My diagnosis was back in 2006 when I started URSO and I was already on statins.

There was an article in one of the Bear Facts magazines within the last couple of years. I am pretty certain it was by Prof. Neuburger which discussed statins within the article.

best wishes

spoul profile image
spoul

Ive been on them for 18 yrs with urso too. My consultant said I needed them as my cholesterol was 11 due to my Pbc. I'm just on low dose simvastatin 20mgs and I'm fine 😊

janetfolley profile image
janetfolley in reply to spoul

Hi I have just started statins for my high cholesterol after been diagnosed for PBC 14 yrs ago. Up to now doc's have ignored my high cholesterol but as it has now reach 11.4 I started taking statins and became very ill feverish, sore throat, cough etc. Did you feel the same as not sure what to do shall I keep on stations!!

gwillistexas profile image
gwillistexas in reply to janetfolley

janetfolley...I had been on statins 4-5 yrs with great success. Once diagnosed w/PBC, dr had me stop. GI says will reconsider after few more labs. I need the statin as my cholesterol is genetic & diet & exercise does nothing.

mattiasw profile image
mattiasw

I never took statins, instead I take bezafibrates, which is a replacement for statins. The reason I take it is that URSO didn't normalize all my liver values. Maybe this is a good combo for you too?

Pea1234 profile image
Pea1234 in reply to mattiasw

How long have you been on bezafibrates?

mattiasw profile image
mattiasw in reply to mattiasw

Found a meta study on URSO+bezafibrate combo, for those like me where URSO only didn't improve the liver values like ALP. Urso only removed the itching.

However, already after starting taking urso, I felt much better. And if it would not be that I have my liver values tested several times per year, I would have thought everything was fine with urso only. How often are your values checked?

dovepress.com/systematic-re...

cclcnal7 profile image
cclcnal7

I was put on statins after having four heart attacks last April. Two weeks later I was rushed back to hospital with a high temperature and very high LFTs. They thought I had biliary sepsis and stopped my statin immediately as they said it was affecting my liver. I have since been diagnosed with PBC via a biopsy and other tests. I am taking statins again, but only 20mg (should be on 60). I also take Urso. Personally I know I have to take the statins but knowing what I know now it makes me wonder if the high dose I was put on kick started my PBC.

ginam profile image
ginam

drdavidwilliams.com/foods-t...

doctoroz.com/slideshow/top-...

Statins aren't good. Hope this helps.

articles.mercola.com/sites/...

in reply to ginam

Thanks Gina 😊

Lisacj profile image
Lisacj

This is another area I find odd in the variation of "what the dr says" I was on statins but was taken off because of PBC. Since then 2 liver specialist have said to me no statins??? My cholesterol level was 6.9 the last time it was checked 5 years ago. Wouldn't it be nice if these Drs/ consultants had a single accurate set of rules !!

mylo2 profile image
mylo2

I am on Statins ,have been for years,have PBC , No one has mentioned coming off them, Have several symptoms pertaining to Pbc, or so I am led to believe from all I have read on this site, I once mentioned my swollen abdomen,which I also put down to PBC, but have now been put on Mebeverine for IBS, and pleased to say its working , the bloatedness is going along with tummy pains and toilet probs,I had also put down to PBC. I have the fatigue and achy legs ,sometimes that bad , feel like Im wading through water when walking, it effects my my whole body, I was DX IN 2006 but guess I had it for sometime before!!!, There was a debate about Statins in general not so long ago, and was declared Safe , programme on the television, or maybe it was on the news. !!!!

StefTeaches profile image
StefTeaches

My alk phosphate was up and my cholesterol. I had an ultra sound on my liver which came back normal. My nurse practitioner gave me to choice of going on a station because my hdl is very good and outweighed the bad to the extent of almost being normal. I chose the statin. A month later my cholesterol was down, but my alk phosphate was even higher. She said if it was still high in 6 months I should see a gasteroligist (sp?). I chose to go right away which was good because the bloodeork and biopsy that followed was how I was diagnosed. He says stay off the statins, and my lipids are way up again! I wonder if I should be on them and why the alkphosphate goes up on them.

Hi,

I'm on statins also and take urso , consultant told me that my high cholesterol was secondary to my pbc and not to worry about it. It was 11 . Something and got it done to 7.4. Not much concern over it

Angela

Loobyloo54 profile image
Loobyloo54

Hi , I also take statins but only alternate days , I had a heart attack and so also have other meds to take along with the urso - at the moment I think this is working and my meds are balanced

EP55 profile image
EP55

I started artovastatin after having massively high cholesterol, liver and thyroid readings . I started itching and felt terrible now dr thinks the statins agreavated what might be PBC, an waiting for results of a biopsy. Anyone know of anyone who has had this

gwillistexas profile image
gwillistexas

I took statin 4 or 5 years before diagnosed with PBC. I was taken off until they could run tests. Cholesterol went back up so I am back on low dose simvastatin with approval of Internist & GI. So far no problem. Labs in July which will include lipid panel.

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