Effects of ursodiol : I have a niece who is... - PBC Foundation

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Effects of ursodiol

Jen11804 profile image
39 Replies

I have a niece who is into natural remedies for anything medical that requires medication.

She was researching ursodiol and found that it can cause cancer

Asked if I would try something natural instead.

Is this an issue? Can it in actual fact cause cancer ??

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Jen11804
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39 Replies
NormaH951 profile image
NormaH951

I hope that is not true! I’ve been on it for 3 years now. 😕

Jen11804 profile image
Jen11804 in reply to NormaH951

I’ve been on it for prob at least 6. I think I’m all reality there is a risk with any pharmaceutical prescriptions.

Just that people don’t do the research.

When I was diagnosed at first I was depressed. But as time passed I live my life the same as always. Was never a heavy drinker just occasional.

But I’m waiting to see what my niece comes back to me with.

Miamomma profile image
Miamomma in reply to Jen11804

I’ll be watching for additional posts from you. I was just put on Urso three days ago:(

Jen11804 profile image
Jen11804 in reply to Miamomma

Ok well I’m waiting for some alternatives. And also although I don’t have an appt with my Gasteoenterologist until June. I will be mentioning to him also about what I just learned

Sydgal profile image
Sydgal in reply to Jen11804

Hi Jen,

I just saw your post, please keep us updated on this :-)

in reply to Sydgal

Robert has posted in depth on this subject in laypersons terms, bang up to date and with evidence gathered from the widest possible and accredited sources. Check it out so you get a balanced view at a time when this is all new and understandably scary for you? Ask your specialist ALL the questions you have, including doubts that crop up by wondering if Natural Remedies would be better for you although we have seen no evidence in this case.

annscot profile image
annscot in reply to Miamomma

I've been on URSO for 15years....I have my life to live and at 75 I'm doing ok. URSO was not available when my younger sister was first diagnosed and subsequently she had a liver transplant and passed away when she was 56. There are many alternative medicines that could do as much harm as prescribed ones. I personally stay clear of alternative medication. Take advice but do as you think best for you. Many of my dear friends have had cancer and passed and I'm still here taking URSO xx

in reply to Miamomma

You'll be wasting a lot of precious time waiting for 'evidence' that URSO causes cancer - it just doesn't. In fact it reduces the risk of colon cancer for PBC group. I understand your drug-wariness after bad experience you attribute to taking statins. This is exactly how google-gossip posing as learned inquiry, (no matter or not if well-meaning), can be so damaging. Speak to PBC F if you really, really want to know the facts. Don't accept my word for it either.

Miamomma profile image
Miamomma in reply to

I would never quit taking Urso for something else without my Gastroenterologist making the change. I’m 70 years old and my liver is going to outlive me. That’s my story and I’m sticking to it!

in reply to Miamomma

Thats good news!

Ballymahon2 profile image
Ballymahon2

Hope not

in reply to Ballymahon2

Brilliant! Wish I'd said that :-)

HealthyChik profile image
HealthyChik

I would love to see the info she found on the connection to cancer. Please post a link for us if you can😊

butterflyEi profile image
butterflyEi

I wonder if there is a truth in the fact that all medicines have side effects and in all groups there will be people who have cancer in addition to other diseases. For myself I now have pernicious anaemia hiatus hernia gall stones etc but no cancer having taken ursodeoxycholic acid for over 12 years.

Will be interested to learn of your findings.

Aussielouise profile image
Aussielouise

Seems strange. I’ve just done an online search and can’t find any links suggesting it causes cancer. I have found a few that say it’s been used with some success along with chemo drugs to treat cancer so I think it unlikely to cause cancer..

I’m always very sceptical when someone who uses “natural “ medicines for everything says a tried and tested drug causes problems. In my former working life I’ve lost track of the number of people who spurned conventional medicine in flavour of so called natural medicine, only to see them go down hill fast.

Another thought, do you really think that drs , the Pbc foundation and other support groups would advocate us taking it if the benefits didn’t outweigh the risks? Let’s face it, what’s the alternative anyway? Liver failure?

Ps. I’ve had cancer.

Jen11804 profile image
Jen11804 in reply to Aussielouise

This is the first I’m hearing of this too. That’s why I put it on this forum. Wondered if anyone else has heard of anything. I also started looking into this and found nothing linking this medication to cancer.

I’m going to talk to my niece and see where she gets this information. Maybe she is trying to just try to convince people to go natural. I will ask where her proof is and let you all know.

I’m skeptical like all of you.

in reply to Jen11804

Good idea to talk to her... unless she is a medical professional I really think she should be very careful what she is advising and investigating - Show her these responses and the distress she can cause with what she may feel is a 'crusade' to go natural.... Even she must realise much of the medications she seems to want to dismiss are derived from natural sources......

Sorry but I’ll take the risk thanks... anything can cause cancer if you search hard enough ...

bear bile was the ‘natural’ Urso and I wouldn’t take that.

Miamomma profile image
Miamomma in reply to

I’m a firm believer that we all have cancer in our bodies...it just depends when it decides to raise its ugly head.

in reply to Miamomma

It does seem like that sometimes especially when you hear of all the people you know getting cancer...

Candy12 profile image
Candy12

Not seen any reasearch on it causing cancer, all medicine is balancing the benefits and risks, natural remedies also carry the same risk/ benefit. If your niece has some reasearch perhaps she’d like to share it with us. I’ve been taking it 10 years, with a disease that’s been stable so that’s 10 years I might not have otherwise had. Think, I’ll be sticking to the urso but that’s my opinion, everyone must do what they feel is right for them . But please.. It’s not a good idea to just stop taking it, if you decide to do so, check with your doctors first so they can monitor you more closely.

Jlruggie profile image
Jlruggie

Please share research articles that show Usodoil causes cancer.

annscot profile image
annscot

healthunlocked.com/user/ann...

iagra profile image
iagra

I did a lot of research on ursodiol before I started on it, 2.5 years ago. I didn't find anywhere that ursodiol was linked to cancers. It is a very old medicine. It was approved by FDA in 1997 in the USA for PBC, but, it was used a lot longer for preventing gallbladder stones. If this medicine caused cancer, it would've been well known by now.

Karaliz profile image
Karaliz

I completely agree with Aussielouise and frankly find it incredibly irresponsible to suggest that the gold standard first line treatment of our rare disease causes cancer. Actually think about what is being proposed here by someone who has a vested interest in using non medical treatments. For those newly diagnosed who find this news alarming please ring the PBC Foundation for reassurance.

I have been on Urso for nearly 16 years and this is the first time I have come across such a nonsensical claim.

Take care PBC friends

Karaliz

barotacnuevo profile image
barotacnuevo

I have been taking urso for about 8 years. I was alarmed with this post. If Urso causes cancer, many of the people in this site must have gone. I'll continue taking my Urso, my LFT was back to normal 2 years ago, maybe with the help of Dandelion Herbal Tea, also. I see my specialist now every 9 months.

God bless everyone.

luxe66 profile image
luxe66

I am totally respecring natural medicines, but know for a fact, that people who is in it , sometimes exaggerate the benefits of it and dangers or conventional one)..i was the same, trust me)..anything can cause cancer in this world, and nobody knows for sure what does.

URSO is pretty natural actually)..if you read description of it)...Just take it and dont think about any natural equivalent, because there is none(..unfortunately. As the matter of fact, majority of naturals was synthesized in a lab anyway with no regulations to it. URSO is much better this way, natural and synthesized folowing regulations, as you get it from the pharmacy.

Cathyjo profile image
Cathyjo

I hate it when people do this, you throw that C word around and have nothing to back it up. No one knows what really causes Cancer if they did they would have a cure. Urso has helped me a lot and I think its sad you have to plant that seed in the minds of people who are all trying to live a normal life with this disorder! Just my opinion!

Jen11804 profile image
Jen11804 in reply to Cathyjo

Same. Just my opinion. Like I said it was brought to my attention so I questioned it. U can relax. As people are responding to what they believe. Thought that’s what this forum was for for information.

Tea_time_13 profile image
Tea_time_13

You know what they call alternative medicine that has been proven to work?

Medicine.

I am all about complementary medicine and using food/dietary changes for health benefits, but... after the anti-vaxxers, I am leery of anyone's claims without peer reviewed clinical trials.

Jen11804 profile image
Jen11804 in reply to Tea_time_13

I am waiting for her response as to where she found the information linking ursodiol with cancer. She said she found it on google scholar. I am looking and found no evidence as of yet.

She said she would forward me the link. I think she is prob more worried than anything because in the last year we have had 3 family members die if cancer and she tends to be a little protective.

I know where she is coming from my family has a very large variety of autoimmune diseases and some were never found out what the exact problem is.

My mom for example has a brain tumour and also has a lot of issue. Luckily she’s still with me. But is very ill at times with dizziness and vomiting

My aunt died of a number of issues

There is breast cancer, prostrate cancer, lymph node cancer, ovarian cancer just to list a few in our family.

So I guess when or if she saw something even in the smalles article

Jen11804 profile image
Jen11804 in reply to Jen11804

She tends to be a little protective. 😞

EileenUSA profile image
EileenUSA

I have used lots of alternative modalities throughout my life ( I'm an old hippie -lol ). I don't like to take drugs in general and try to avoid if possible. So when I got dx'd with PBC and told to take URSO, I researched it..

For me,( this is just me) I have a good comfort level with it as a drug. (Again I am someone who tries to not take drugs when possible.)

This is how I came to peace with it. ( besides the SUPER OBVIOUS that we hope it reduces damage from an incurable disease- PBC and slows progression according to follow up studies)

It's been in use for decades, there's lots of users over those decades and unlike some drugs where red flags show up- no proven fatal or carcinogenic effects from use have come out. ( that I've seen reported in any reputable source)

Also, simply put, URSO is a bile acid that mixes with the other 4 or 5 main types of bile acids naturally occurring in our bodies- the URSO helps keep ratio of bile acids in best possible mix for our compromised biliary systems.

I don't view it as different from taking Vit D or B-12 vitamin supplements- as I need the additional amounts.

This is my "making peace process" when it comes to URSO.

ninjagirlwebb profile image
ninjagirlwebb in reply to EileenUSA

I, too dislike taking meds unless absolutely necessary. My doctor told me, think of taking urso just as you would a vitamin. Exactly how you are thinking.

While it is unfortunate that we have this condition, just be grateful that urso helps. The alternative is dismal.

Think I saw on the PSC site people who’d been on Urso for 10 years maybe even longer. PSC UK site. Know it can be hugely helpful with PBC. Google the research on Urso and PBC. Think the benefits outweigh the risks. In PSC the risks of cancer are increased because of the illness not the medication. Wish Urso was as effective in PSC as it is in PBC.

Sachin1234 profile image
Sachin1234

Who got the disease you or your nice ? If it’s about yourself you better research yourself.. if you opt out urso and go natural remedy please, let’s us know how you do after coupe years! There are very few have done well with out urso it’s not because they are taking natural remedies it is because they are progressing slower then in general! Good luck 👍🏼

Ballymahon2 profile image
Ballymahon2

Hope not

kizzywizzy99 profile image
kizzywizzy99

I've been on Urso 20 years and feing very well on it. Urso in fact is not 'drug' in the conventional sense, but is a bile salt that helps flush out the liver, and although it is manufactured, it mimics the natural bile produced in the body. Eating healthy food (organic where possible), eliminating toxic substances from the home, exercising and living as full a life as possible are the best ways to avoid cancer

VeeWat profile image
VeeWat

I’m on it 20 years

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