PBC Foundation

Statin

I saw my Internist this morning to go over last labs. In discussing my cholesterol, he sent a msg to my GI asking his thoughts on getting back on statin. GI responded quickly & approved as long as they both keep an eye on enzymes. I researched Journal of Lipid Research & looked into their clinical trials with the use of statins & PBC. The trial was done with simvastatin 40 mg, which is what I’ve always taken. They found no harmful effects on PBC. I had a full script when I was taken off so Dr said I can continue 40 mg or can cut in half. Will give it a fair shot.

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That sounds like good news. Are you going to try the half or the full dose? Good luck.

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I’ll start cutting in half for a while. Want to make sure it doesn’t mess with anything. Labs in 3 months for lipid, hepatic & thyroid.

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gwillistexas,

Sounds good 👍. I hope you can get the benefit of it without it raising your LFT's. I need to have my cholesterol checked. Good to know there is a statin out there that won't mess with LFT's. Keep us posted.

Stella ❤

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My hopes as well. Tks

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As I shared with you before, my hepatologist put me back on statins & told me it was perfectly safe. I still tripled check by consulting with my GI/PCP & the cardiologist. Well, hepatologist did suggest, why don't you discuss it as well with your PCP. Then my PCP said, let's check in with the cardiologist as well.

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Great😊 and it doesn’t have negative effect on your enzymes?

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Don't think so.

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Which statin do you take?

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Generic for Lipitor

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My enzymes elevated for rhe first time in 2013 after taking statins just watch your enzymes you will know after the first blood tests good luck

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I’m taking the same medication and it works great for me. Keep us informed.

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Lipitor or simvastatin?

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Lipitor

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Gatorlin...I remember your AMA & ANA we’re negative? I may be thinking of another member.

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No, my ama was very high, but the ANA2 was negative

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Gatorlin...so I actually didn’t remember if you definitely have PBC.

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No, but since my AMA was so high, I am having labs drawn twice a year. My doc said I could eventually develop a problem, and let her know if I do. Since I am a retired nurse, I am very optimistic that I won’t.

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I don’t yet. My test revealed that I’m leaning toward Lupus, but it is not active either. As I mentioned in another post, the dr plans to check me for that twice a year

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Hi gwillistexas

I have been on simvastatin for a long time now even before PBC was diagnosed. I have often asked to come off them but have always been advised best not. My blood tests for the PBC have remained slightly above normal parameters.

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Thank you. Yes, I took simvastatin 5 years prior to diagnosis & I didn’t want to stop taking it. I’m praying it has no adverse effect now. Do you take 20 Or 40?

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Hi gwillistexas

Oh I only take one at a time :-) :-)

apologies for my terrible sense of humour, seriously

my prescription is for 10mg a day.

hope I have at least brought a smile to your day :-)

best wishes

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Lol! I’m sorry... I meant 20 mg or 40mg. 🤗 I take one at night.

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Thanks for info as I have just started Stations as was worried in case it effects my PBC

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Well I have to wonder this...how could it be healthy to let that cholesterol sit in our blood? When my dr put me on it 5 years ago, he said “your liver manufactures that stuff”. So I was given no option but to take statin. And my cholesterol dropped 60 points the first month & has stayed low, until now. Anyway, I’m on it & hope can stay on it. 😊

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I have high cholesterol, always have since being a teen. I have PBC and recently started taking atorvistatin too, besides ursodiol. I only take 10mg, but also radically changed my diet. I got it down from 290 to 170 in three months.

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You might not even need the meds. Sometimes diet & exercise alone can address the issue but unfortunately, our health care system just tells you you need to do this & that without coming up with a comprehensive game plan to set you on course. All so much easier to prescribe a pill.

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I had changed my diet many times and it never worked alone. The med is what did it. I hate being on a statin, but as grudgingly as I say this, it works.

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Yes...the body changes too as we age. Without meds, my cholesterol #'s fluctuated...sometimes normal, sometimes not. Had to be on a really stringent regiment which is not conducive to day to day living unless you are a model or actress. So I went back on meds. But I was able to decrease the dosage from 20 mg daily to 10 mg every other day.

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claygi...I had high cholesterol for many years but was finally given no choice but to start statin. Never had enzyme issue until last year. Mine is familial so no diet helps. Most females on my mom’s side have high cholesterol. If I could keep HDL high, the LDL would be of no concern. One of my aunts had high cholesterol but her HDL stayed high 80’s. Wish I could be so lucky. She also drank red wine.

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Mine is familial too, my dad even had the genetic test and it came back positive. When I was 19, and about 97 lbs, my cholesterol was at its peak, 490. Now, I’m 46, weigh 115, and my last test it was 220, but I got a little lazy and did not take the statin evert night. I’m going to get militant again and try to get it back down to 170.

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Same here. Both parents were on meds. Both siblings on meds except one of them stopped & is eating a very stringent diet & massive daily (7x a week) exercise effort. He took himself off meds with his doctor's approval.

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My average weight was 117. But every time my thyroid goes hyper, I may lose one or two lbs then it’s impossible to get it back because I also have high metabolism. Blessing & curse. Right now I’m at 111. Total cholesterol was 230 end of June. GI wanted to watch enzymes before allowing me to start statin again. I don’t think he really realized my cholesterol has been a problem for years, not something that just started. Glad my Internist contacted him & got the green light.

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My son was given Lipitor for high cholesterol. My cholesterol went down because of my diet and juicing. His LFTs are already much worse and mine are perfect. It you're going to take a statin, Simvastin is probably the safest, but I can't tell his doctor what to do.

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I won’t take Lipitor or Crestor. My Internist takes simvastatin so I’m ok with it😊

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