Speechless

I have just been to my dentist for 1st check up since diagnosis 4 weeks ago, updated him with me now having PBC, told him what it was & he changed 'cholangitis' to 'cirrhosis' as he said it meant more to him if he used that term, when I said it wasn't associated with alcohol his comment was 'REALLY?' He had never heard of it or the medication & wants to know the contra indications of using any local anaesthetic etc before doing a filling I need. Has anyone had problems with dental work? I see my consultant for the first time tomorrow since the diagnosis as consultant had written to GP to prescribe the Ursofalk, & she told me the diagnosis. I was left speechless & quite upset by my dentists attitude as I am only just getting my head round everything as it is.

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  • I'll let you know what consultant says tomorrow D0ra, fed up of this condition already even though compared with some people I don't have any problems from it, my GP just said ' you are well, just get used to living with it' but it takes so,e time to get your head round it!

  • Hello Quilter1.

    I informed my dentist I had PBC in 2010 as I'd been going to him for a few years at the time and each time I went for a check-up he asked me if I was on any medication, etc. After I informed him I had PBC he put it up on his comnputer there and then and read a bit about it.

    I wasn't 50 at the time and had been going every 12mths for check-ups but once I reached 50 (3yrs ago) he asked me to start going every 6mths., partly because of my age and partly due to having PBC and the fact we can encounter bone health issues (I've not got anything like this that I know of at present).

    I have had a couple fillings since being diagnosed with PBC and he used local anaesthetic. The anaesthetic I believe is broken down by muscle as opposed to the liver due to it being local. I have got a loose bottom middle tooth that started to look a bit out of alignment a few years ago but I've had no problems with it until late last year when eating, I felt it. It has started to become looser and I was expecting to have it extracted earlier this year when I went for a check-up. I left it to the dentist (I see the same one each time, always have) to give his opinion and he said he was going to leave it to come out of its own accord. I've no problems with it and thinking, if it extracts naturally I won't have a bigger wound to heal up. I was happy with that. Nearly 3 months on it is still wobbly but causing me no problems.

    When I was diagnosed with PBC it did end with the word 'cirrhosis'. I am not happy that it has been altered to 'cholangitis'. To me the initial mention a few years ago didn't conjure up what PBC could become. I don't care to be honest as what's in a name. Regardless PBC can still come down to cirrhosis in some cases. Over time I've got round how I say to people I've PBC. Easier to say I've got something auto-immune like MS, Lupus, etc but mine affects my liver and PBC causes my bile ducts to be attacked and destroyed thus causing my liver to be irritated with bile.

    Since diagnosis I've found my dentist has been more interested in finding out about PBC than certain medical staff. I've encountered 2 nurses at 2 different GP practices in the last 6 years and both in my mind were ignorant. One I saw several times in a year asked me each time how much alcohol I used to drink, another just didn't have a clue and wasn't interested and not so happy when I put in that I have to have the GGT taken each time I have bloods due to this being a liver-related disorder.

    Personally a good dentist would find out more and nowadays if a medically trained professional (ie GP, optician, dentist, etc) has certain doubts they can easily pick up the phone and contact a specialist in that field for advice within the NHS. I think if a patient is up front and honest about how they really are (I note my bloods each time as certain ones in the full blood count might be important, ie in iron deficiency cases if having a tooth extraction for instance), then majority of work done with local anaesthesia is more than likely going to be fine.

  • i have always had 6 monthly check ups for years, thought that was the routine. I do need a tooth taking out but am being referred to hospital for sedation as I am a very anxious patient & I don't think I would tolerate having it out under local !

  • I have pbc/aih overlap. I called my dr before my dentist apt and he wanted me to be careful with antibiotics. But said I'm ok. I'm sorry that we have to go through this with our Dr and other medical professionals that haven't a clue

  • Hi quilter1,

    Sounds to me like he must have heard of it, or he wouldn't have come up with 'cirrhosis'. Bad enough being newly diagnosed without stupid comments like that.

  • Some of the google sights still call it cirrhosis. Most didn't bother to up date the new name. Either way we will always be frowned upon from people who have their head up their ass and enjoy using other peoples pain and fears to better themselves.

    There is no excuse for a doctors office to have no clue

  • There are good reasons for your dentist to be aware of PBC.

    By standards of other conditions, we are ahead of the curve on publicising the name change, but there is still much to do.

    We have leaflets specifically targeted at healthcare practitioners (HCPs) which explains PBC in a helpful way. Contact the Foundation directly, and we can send you some. Alternatively, you can print off a copy from the website.

  • Thank you, I have the HCP leaflet from the original pack you sent me which I am going to pass on to my dentist providing my consultant doesn't need it tomorrow but I am sure he will be clued up ( fingers crossed!)

  • I completely understand why you're upset. Your dentist, at best, was very insensitive. The general ignorance out there is frustrating and annoying. However, the facts are this is a rare disease. How many of us who have been diagnosed with PBC can put our hands on our hearts and say that we had heard of this disease before diagnosis? I know I certainly hadn't & I consider myself reasonably well educated and well read. Statistically one of the main causes of cirrhosis of the liver is excessive alcohol consumption. That's a fact. So I'm not excusing your dentist - or anyone in the medical field - but I do understand the reason for the general ignorance. It's very unfortunate and why we should do our best to educate people (including those in the medical profession if necessary) every chance we get. Actually the combined knowledge and experience on this site could teach a lot of medical professionals a thing or two! So we need to keep spreading the word & in the meantime continue to support each other here. The time immediately after diagnosis is very tough. But it will get easier...

  • LisaC22

    Please be aware of NALD, non alcholic liver disease. I have never drank alcohol in my life, yet I have PBC. I find it offensive when people assume that main causes of cirrhosis of the liver is excessive alcohol consumption. The message should be to the patients suffering from PBC is that you do not necessarily have to drink alcohol to be unlucky enough to have PBC. It is an autoimmune condition, of which the medical profession do not know enough about.

  • I certainly never intended to offend anyone but your offence is being directed at the wrong person. I think you should check my reply again. I did not say alcohol was the main cause. I said it was ONE of the main causes and I stand by that answer. Alcohol and hepatitis are the top two causes. Please feel free to research this yourself. I am fully aware of what NALD is. I am also fully aware of the fact that this is a very sensitive topic which is why I carefully worded my reply and researched it in advance. Please remember I too have PBC and have faced incorrect assumptions that it was caused by alcohol. On the other hand my father died from cirrhosis of the liver which was most definitely caused by alcohol. So I can very much see both sides of this. I wish you the best of luck for the future.

  • Hi to all of you with dental issues. I used to have healthy beautiful teeth, but ever since being diagnosed with this PBC I spend lots of time at dentist, who also has no clue of PBC. Those injections affects me terribly. It is one filling after the other. Even my crowns start giving problems. He says I do not floss properly. The other day while flossing a piece of my front tooth broke off,. I am pleading with him to rather get rid of them all and give me a set of false teeth, but he refuses. It is one thing suffering with disease nobody knows about and the medication very costly,now the teeth are also a real problem. For days after the injection I feel not well. Was there last week,due 22nd again. Even the crowns start giving problems,and I have a very good dentist.

  • I have no problems with my dentist. My problems are with my teeth! Ever since bring diagnosed with PBC and subsequently suffering with dry mouth my teeth seem to be deteriorating at an alarming rate ☹️. At present the teeth I have are my own but my dentist has already suggested false teeth, which I'm reluctant to do until it is inevitable that I must. I also was not happy about the name change. Cholangitis says nothing to me and the 'itis' part seems to be suggesting some sort of inflammation.

  • tell the ignorant dentist to Google it.... ive had lots of fillings.... and normal injections.

    also tell the dentist its an auto immune disease like rheumatoid arthrritus where the body attacks its own parts..... in this instance the liver... this should hopefully make him realise. if not change dentists and let him know why.

    this is the whole reason that the name was changed as lots of people with the disease neverget cirrhosis and the word encourages prejudice.

    unfortunately it is one thing we all suffer from.

    ive always used the reference to rheumatoid as people at have heard of it.

    stick up for yourself and explain that lessened misunderstanding and helped me feel a bit more in control. best wishes cazer. x

  • I've just had a root canal and a tooth extraction and I'm fine. My problem was after a small fall I cracked and damaged my teeth. Since having PBC my teeth are falling apart. As for the name of our disease I really don't care all I know is I have it regardless of the name 😝

  • Hi Quilter1

    I am lucky to have a great dentist who rolls with all the medication I have and has never been critical. What an ignoramus! My chap used a book to look up the medication which I guess was the BNF and then said he would do further research when the clinic was over. May I suggest that one of the PBC Foundation leaflets for professionals may be of some help to your dentist. Is there another more up to date dentist in your area that you would prefer? The dental hygenist at my practice has a very poorly husband so she is on the case when I have a problem and is sympathetic to illnesses where you look well but are in fact suffering an autoimmune disease.

    best wishes

    PS since typing this I see that Robert has suggested one of their leaflets - they are great

  • I go to the dentist every six months for a checkup and have only been numbed once where a piece of an old filling came out. He NEVER batted an eye about anything when I told him over ten years ago that I had PBC. And BTW... when I was diagnosed it was called Primary Biliary Cirrhosis and that's what it will always be TO ME. It was explained to me, in the beginning, in 2006, that cirrhosis happens when the body attacks the small bile ducts and causes scarring, which in turn, can lead to cirrhosis. Funny how people changed the name, but the end result is actually the same as what it always WAS...... 😕

  • Find a new more experienced smarter dentist.... it's not cirrhosis unless u have cirrhosis 🙄

  • I was scheduled for a crown and had infection with some nerve pain. dentist put me on antibiotic and low dose pain med, this in turn put me in the hospital back in Feb. This was when they diagnosed me with acute hepatitis. This was the beginning of everything from there I had blood work on top of blood work and a liver biopsy. All the while, my dentist has declined to fix the crown because of the same reason "says he doesn't know what he can give me" So let me know too if you have an answer to this. They say keep you teeth healthy but what if your dentist refuses to treat you!

    Connie

  • Hi Quilter1, for many years before diagnosis my dentist told me I was just unlucky to have gums which are susceptible to infection. I have had dental hygiene appointments every 12 weeks for about 20 years and although I've now got a number of implants my dental health has remained more or less stable for a very long time now. Once PBC was diagnosed, 3 years ago my dentist admitted she didn't know anything about it but looked it up and said, "looks like we know why you've had such a battle with your teeth now"!

    I've had local anaesthetic many times with no problems but being happy with your dentist is important so maybe look around for someone with a little more to offer.

    I also had a shock when the consultant herpetologist told me PBC wasn't really his thing!

    I swiftly moved to QEHB where it's such a comfort to be treated by a medical team who are supportive and caring and most importantly up to speed with the condition.

    It's a hard time for anyone after diagnosis but there is lots of help out there so my advice is go to those who understand.

    Very best wishes.

    Lorraine

  • I have seen my consultant today & he said there is no problem with having local anaesthetic for fillings etc. Said my dentist should have looked it up for himself ! Still got a long wait for the fibroscan until I have that he doesn't know if I have the cirrhosis the ultrasound suggested. I asked about diet etc & he just said follow a healthy diet, take the ursofalk & hopefully that will bring my LFT's down, will be monitored on a regular basis. I was the 4 th lady in his clinic this morning with PBC !

  • Hi there

    I'm new to this forum , however the main risk from dentistry work is bleeding so providing your blood clotting mechanism is ok you shouldn't have a problem

    I recently attended destist for extraction and my care was really good . Done education of dentist required and accepted graciously . I did have my blood results at hand which we discussed prior to work done..

    you could check with your GP re your blood results .

    Hope this is helpful .

  • Thank you I will do I have had trouble with excessive bleeding over 20 years ago, I am having to have a tooth out but going to hospital for that for sedation as I am a very nervous patient so they will have blood results to hand as it is the same hospital I see my consultant at.

  • Hi. Sorry you got an insensitive and maybe ignorant dentist. I have had a lot of dental work in the past 8 months with absolutely no problems. Neither my dentist nor the dental surgeon batted an eyelash about the PBC. I have had two knee replacements so I need to take antibiotics an hour ahead of any dental work but that is the main concern. I have had local anesthetics multiple times with no issues at all. I even had a tooth removed (that really threw me for a loop - how old am I?) and chose to have it done with only local anesthetics and again - no issues, especially related to my liver. I was wondering why I had this many problems with my teeth all of a sudden. The hygenist suggested that everyone's mouth changes over the years and gums recede and that might be why I have two crowns that need to be replaced, they don't fit tightly any more and bacteria can get in there. I read below that someone suggested that a dry mouth might contribute to additional decay. I hadn't heard that but that interests me. I do have dry mouth but try to always have water with me, just to sip. The only time my mouth is truly dry is when I'm sleeping. I'll ask my dentist if there is a product to rinse my mouth with before sleeping that might help in that department. Will post if I find out anything useful.

    In the meantime, don't worry about the dentist - at least as far as the PBC.

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