Vaping and PBC

[Hils67]

Any vapers out there? I'm wondering whether my vaping triggered the PBC? all the research I've done suggests Polypropylene Glycol is not toxic and neither is nicotine in the quantities vaped.

I wonder whether anyone else vaped prior to getting diagnosed? Also whether it's ok to carry on vaping or will this exacerbate the condition?

Grateful for your views 😉.

This site has been so useful for me and really helped me feel less scared and less isolated. I was only diagnosed a couple of weeks ago so still trying to get my head around it all, but this forum has been a mine of information.

[Tigger858]

I was diagnosed with PBC 4 years ago. I asked what caused it and was told they don't know, just unlucky. I've never "vaped" so doubt it has anything to do with your diagnoses. Check with your GP/Consultant if nicotine etc can have a detrimental effect on your health.

[Junolee]

Hi there. The jury is out really on what if anything triggers the PBC, reckon we are just unlucky. I did smoke for years but gave up years before diagnosis, I was also a vegetarian for most of my life, was the lack of meat the cause? Lack of sunlight? Drinking wine, drinking coffee? Not drinking milk? Having tonsils removed? Growing up in the 70s? who knows!!!!! Very doubtful it was your vaping. Do your best to give up only because - why have the crutch if you don't have to. I do best not to eat cake but it's very difficult and guess what? What's the point of living if you can't live. Keep smiling x

[Hidden]

I've never vaped however I did smoke, and I looked into the vaping (electronic cigarettes) when I decided to stop. I personally feel the reasearch on the vaping needs to be read with caution all I could find at the time was written by those producing it or those opposed to it for other commercial reasons. I found no long term studies to confirm or deny its safety so I stopped smoking using other ways.

However I think anything that stops you using cigarettes has to be a good thing, but It's worth asking your consultant what they think.

Pbc is thought to be genetic with an environmental triggr in those predisposed to it, I have read everything from hair dye ,nail varnish, smoking and even the water. I think every one with pbc could give a suggestion of what they thought triggered it in them personally and I'am sure each suggestion would be different, so I would say live your life and do what makes you happy unless it's proven.

[butterflyEi]

Hi Hils67

Welcome to the group, like you I have found the information on here invaluable. I have been diagnosed for about 10 years now but am sure I have had it for longer.

I have never vaped but used to smoke. I think Candy12 has a point about every one with PBC making the suggestion as to what triggered each individual persons PBC. I often read on here that people say they never had a days illness before the PBC. I was always the "healthy horse" until I came up to peri menopause age when my hormones would have been all over the place. Others say their PBC was diagnosed when they were pregnant and as PBC is more likely to be diagnosed in women could it be a hormonal thing. There are so many variables and possibilities that it is still any ones guess however as PBC has been about longer than electronic cigarettes it would seem that may not be a factor. But to follow Candy12's line of thought that PBC is thought to be genetic with and environmental trigger - there are many in my family who have had various other auto immune diseases.

best wishes

[LisaC22]

Hi there. I gave up cigarettes 2 years ago & began vaping then. In May of 2015 I received LFT results that were literally off the charts. Before I saw a specialist (and was subsequently diagnosed with PBC), I discussed the LFT results with my GP. I asked could vaping cause such crazy results and he said no. I think the jury's out on vaping but I personally believe that it has to be safer/better than smoking. I know I feel a million times better since giving up - apart from all the lovely PBC symptoms that is 😉

[Hils67]

Thanks everyone for your replies...living life to the full has a whole new meaning now!

I'm still coming to terms with this condition...some days I'm thinking that certain lifestyle changes maybe a good thing, other days I don't feel quite so positive.

What I will say though is that this forum is great for helping me to put things in perspective...I could be so much worse...thank you everyone xx

[amt50 in reply to Hils67]

I have also been recently diagnosed, have you been prescribed Urso?

Thanks

[Hils67 in reply to amt50]

Yes I've been taking urso for a couple of weeks now. Since taking it I do get a bit of nausea and have developed some itching...not all the time. I understand these symptoms should calm down as my body gets used to taking the urso.

[hotdog]

Hi

I started vaping long after I was diagnosed. In speaking to my GP and consultant about it. They said it was far safer than smoking which I did before, as others have said they do not yet understand what the causes are for someone to get PBC as many people have never smoked or vaped. Hope this is of some help to you. All the best to you. x

[Twinkle26]

I can't answer that but I can say my son smoked quite a lot last year then 9 months ago started using the liquid smoke don't know which type but just to sY that his carbon monoxide level was at 2 and I think it's great considering the amount he used to smoke, this was done at his wife's anti natal appointment which is now given to new mums( and partners).

[Hils67 in reply to Twinkle26]

Ah that's encouraging...also congratulations you're going to be a grandma

[liver-bird]

I have found that I am the fourth person with PBC in my family. My grandmother, my cousin, my cousin`s daughter and now myself. For this reason I think it is hereditary rather than something I have done (or not done).

[Heleno]

I vape and have done for about a year now. Used to smoke and gave up about 3 times but always ended up going back to it, hence the vaping. I was only diagnosed in Nov last year but based on symptoms I think I've had it for at least 8 to 10 years, I was having regular consultant appts with blood tests for about 2-3 years before they eventually diagnosed PBC after a 2nd review of a biopsy that I had just over a year ago. I don't think the vaping has anything to do with it, I also have raynauds which is what I was referred to consultant for in the first place, but have read a lot of people with PBC have other autoimmune diseases.