Alpha gal, Urso, and high cholesterol and blood sugar.

[Beejoyful]

I have a severe allergy to mammal products called Alpha Gal. Last year I found out I also have PBC right before I found out I had Lyme disease. My symptoms aren’t too bad. My Liver function numbers are good. I test positive for AMA. I recently had labs done and have very high LDL cholesterol and very high blood sugar. I am reading about how much the liver is involved in both these functions and wonder if the PBC is more advanced than I want to think. Wondering if I should be on URSO but wonder if I can have it without reacting if it’s derived from cows. I am 52 and have always been careful about diet and in good shape. This is so very discouraging. And do statins mess up the liver too? Any advice or info appreciated.

[gwillistexas]

Beejoyful, I don’t think there is scientific proof statins meds up the liver. However, I was taken off them when diagnosed with PBC. My cholesterol is genetic & statins are the only way to keep it under control. I was allowed to start statin again a few months ago, but we have to keep close eye on LFT’s, which we do regularly.

[Rsbrown in reply to gwillistexas]

Thank you for your thoughts. I appreciate it. It is hard to figure a lot of this out. I wonder if it is genetic if that is the liver?

[gwillistexas]

Sorry...*”mess” up the liver

[EileenUSA]

Hi,

I understand that URSO is synthetically made. So not sure where the cow-animal concern would be? Is it something in the filler or capsulation? URSO can slow progress of disease so it's worth exploring the options. Lyme can be a difficult disease to recover from. Glad you are here- lots of good peer support.

[Rsbrown in reply to EileenUSA]

Thanks Eileen. Someone had mentioned in one of the past posts about it being derived also from cows. You never know! Lyme is hard. It has rocked my world and the last two years have been quite humbling. I think possibly the lyme bacteria may have triggered the PBC but who knows. Thank you for the support!

[Ballymahon2]

I am not allowed statins coz of pbc they are hard on the liver

[kandiepat in reply to Ballymahon2]

My Liver specialist just put me on statins today! He said it was nothing to do with food and I was to stay on it this time! Hope this helps. kandiepat

[gwillistexas in reply to kandiepat]

I am on a statin also. They have actually been proven not to be harmful. Dr Robert Gish stated in one of his videos that they have been proven to be anti cancer, anti fibrotic and anti something else. I worry not about taking it. My cholesterol is genetic so statin is my only choice. 😊

[Pamela4475 in reply to gwillistexas]

I take Crestor..... a statin second generation and less bone/muscle pain

[gwillistexas in reply to Pamela4475]

I take simvastatin and never had any problems with aches or anything. 😊

[butterflyEi]

Hi Beejoyful

Ursodeoxycholic acid is synthesized bear bile. Apparently it is normal with PBC to have elevated cholesterol both good and bad. If you have been diagnosed with PBC it is best to be on URSO as it helps to slow the advancement of the disease. I was placed on statins over 20 years ago and even though I have asked both doctor and specialist to stop taking them they have asked me to stay on the statin. I was diagnosed with asymptomatic PBC back in 2006 and prescribed URSO straight away allowing my progression to slow and blood results to return in the low range.

It is good to be careful with your diet and to remain in good shape with exercise. I was diagnosed at the age of around 55 and believe that because my PBC was caught early that I have been able to continue to live a relatively trouble free life until around 2014 when the so called itch of PBC flared.

best wishes

[Rsbrown in reply to butterflyEi]

So they actually have bear bile in it? It is so hard not to be able to have anything with mammal ingredients. Lots of capsules have gelatin which is from cow.

[butterflyEi in reply to Rsbrown]

I believe it is synthesized

[GrittyReads]

Hi Beejoyful (lovely moniker!)

My understanding is that it depends 'Exactly' what your blood results - that is, specifically: what your exact liver function tests (LFTs) - are, for a consultant to be able to decide whether or not you do, actually, have PBC yet.

The presence of AMA-M2 is a strong indicator/ warning for PBC, but ... on their own ... AMAs are not enough for a diagnosis of PBC. [NB: some people - about 10% of the population according to blood donor statistics, just 'have' AMAs and the vast majority of these never develop PBC]. It has been known that I have high AMA-M2 since 1992, and I still don't have PBC. My annual bloods/lfts are always normal, and I have no symptoms or illness, and over the years I have had several re-checks, when some GPs (& even liver specialists!) have become concerned.

So it does depend exactly what your LFTs are. Also, my consultant (now, one of the UK's leading PBC experts) is against the use of urso until the presence of PBC is completely diagnosed. [That is, via AMAs, plus raised lfts typical of PBC, and maybe also a liver biopsy that shows PBC damage, if AMAs are not present but lfts suggest PBC ... NB these are the 3 official/formal diagnostic tests/criteria for diagnosis of PBC].

I would check all of this with the lovely advisors at the 'PBC Foundation' who host this site - links at top of page to their website, with phone and email contact details to advisors. You can also ask them for infirmation about Urso manufacture (in case your lfts do indicate PBC). I'm sure I've read that in the West, all Urso manufacture is now synthetic.

Hope this helps, take care and try to keep cheerful and not worry too much. Stress is always the worst thing for all autoimmune conditions. So: have fun, do things you love, and enjoy life as much as possible, while doing practical things for your condition, yet without letting it take over.

Cheers,

Gritty.

[Rsbrown in reply to GrittyReads]

Thank you for the thoughtful reply. I was told by my GI doctor I had PBC and to wait until I had more symptoms. At that time I was pretty sick but I think much was due to lyme that was yet to be diagnoses. My LFTs were elevated then. I went to a liver specialist here in NC who is well know and he said I dont have PBC just as you said. I have positive AMA2 but not elevated bloodwork. I do occossionally have itching in my feet. Weird. And upper right quadrant pain. And my LDL cholesterol is very high, along with sugars so I wondered if stressed liver from PBC causing. I thought I read on here that someone had no symptoms and the biopsy staged at at 3. So all that made me nervous. I will try to check with the hosts here. That is a very helpful suggestion! Thanks for the time!!

[Rsbrown in reply to Rsbrown]

Please excuse typos! Rushing!

[berg944 in reply to GrittyReads]

What is the name of your consultant please?

[GrittyReads in reply to berg944]

We are asked to not name Medics on the 'Health Unlocked' site. If you check out the PBC Foundation website (links above, they host this site on 'Health Unlocked'), he is one of the 2 main Consultants that advise the PBC F. However, I am in the UK.

I hope this helps, but it will help you, hugely, if you learn far more about PBC, its detection and treatment, so the 'PBC F' site is a great place to start.

Hope this helps.

Gritty

[berg944 in reply to GrittyReads]

Only asked out of interest as my consultant left about a year ago and he was very good. They didn't replace him so now I just get a nurse to tell me my liver is normal🙄. Also in UK, had PBC for about 10 years.

[GrittyReads in reply to berg944]

Roughly, where are you in the UK? I live in Devon, but as I had incorrectly been semi-labelled as having PBC by a local-ish consultant (when in fact I only have AMAs) I travelled to Birmingham's QEH to see the consultant GH.

He was wonderful - but I am an interesting oddity, I guess. He saw me again, the year after, but all tests and checks (far more thorough than anything done locally) proved stable and non-worrying, and he said I don't need to see him unless my lfts - and the other level-checks he instigated, and told me to watch for ( eg: especially GGT levels) - changed in a worrying way. But all were and still are good, and have remained stable and my health is very good.

Your GP can refer you to see any consultant, anywhere, in the UK, which is what my wonderful GP did. However, you have to pay for all transport etc, and accommodation if you need to stay over for an early appointment.

Also, I don't know how easy it would be to do this now, as the ongoing UK crisis and reduction in Health Funding (in real terms) may make consultants chary of seeing people outside their area, unless they are extra-special cases.

Hope this helps,

Gritty

[berg944 in reply to GrittyReads]

Countess of Chester hospital.

[Skypony]

Hi Beejoyful

I looked into the issue of PBC and statins when they were recommended for me. I agree with gwillistexas, blood tests are of course important when you're taking them, but there is no general contra indication for PBC. The research I read said there was no evidence of increased risk, but I understand why some people are cautious.

Best wishes

[gwillistexas in reply to Skypony]

Skypony...a few months ago I searched Lipid Journal. In short, they said simvastatin posed no risk. I would have to go back & read again but I remember the simvastatin because that’s what I take. 😊

[Skypony in reply to gwillistexas]

Thank you, yes I take Simvastatin too.

[gwillistexas in reply to Skypony]

👍🤗

[gwillistexas in reply to Skypony]

Skypony...I was originally put on 40 mg. When my drs agreed I could start again my Internist said I could continue w/40 but I wanted to try less. I had a full script of 40mg , so I cut them in half. How much are you on?

[Skypony in reply to gwillistexas]

I'm only taking 10mg and seem to get good therapeutic effect. I find I can manage on the lowest dose of most drugs, but this must be an individual thing. I take 1000mg of Urso though! X

[gwillistexas in reply to Skypony]

It hasn’t messed with your enzyme numbers? That’s what I’m concerned about

[Skypony in reply to gwillistexas]

No it hasn't.

[gwillistexas in reply to Skypony]

That’s encouraging. Thank you!

[shared in reply to gwillistexas]

I was on 40 mg Simvastatin and discovered that it may be tough on the kidneys and so switched to pravastatin . Please be careful.

[gwillistexas in reply to shared]

Thanks for sharing that. You have no problems with pravastatin? In my years of taking simvastatin my labs have always shown my kidney function to be normal. I will certainly discuss with my dr. 😊