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PBC Foundation
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Just diagnosed with PBC

Just diagnosed with PBC

Hi just been diagnosed with PBC which was a complete shock as started with routine blood test for something else.. trying to understand what this means and how I will be affected , worrying about how it might progress , have started on ursofalk 250mg twice a day ... will be 60 next month !! Is there anything I should be doing diet wise? Or any info and help greatly appreciated. Feel confused x

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Don't worry. PBC is a slow progressing disease. If you had no symptoms & just caught the issue by accident, means that it was caught early enough. The urso will slow the progression of this.

My hepatologist says just think of taking urso like it is a vitamin & leave the worrying to him.

Eat a healthy diet as is recommended for the average person. Stay away from processed foods, too much salt & fatty stuff.

Listen to your doctors & follow their guidance. You are going to be fine!!!

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Thank you , that’s helped put my mind at rest.. it’s good to hear from others in the same situation thanks again .

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Enjoy life to its fullest. We can't control any of this, but we can manage how we react.

Find a hepatologist that you trust & is attentive to you & let them worry about you. You just follow their guidance & live your life as before the diagnosis.

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Hi was diagnosed in November after having blood tests for fatigue and itching. It was a complete shock so I understand how you are feeling. Have you joined the PBC Foundation? There is lots if really useful information and leaflets there. I think that at this stage we just need to adjust to the medication, I have been suffering with side effects from the Urso but I have read that these will probably settle down as my body gets used to them. Have you seen a specialist or had any scans yet? Although I had never heard of this disease before from what I have read most people manage to lead relatively normal lives by taking the medication and having regular check ups so try not to worry too much - that is what I am trying to do so I know it is easier said than done!

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Thanks for replying, yes I’ve seen a specialist and am waiting for a dexa scan... have joined the PBC Foundation today, have felt a bit sick since starting the tablets but reckon it’ll settle down .. always had trouble sleeping and been using nytol for years but stopped them now so struggling with sleep at the moment too .

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I have had no side effects from urso so far

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I was diagnosed recently also i am almost 60 started on urso eat healthy diet i have cut out alcohol but that was my choice i am hoping urso works and my bloods get better

Good luck

Hope all goes well for you

I was also in state of shock but i am coming to terms with it

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You sound like me :-) thanks for the info .. good luck to you too .

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It seems a lot of us women are getting this autoimmune condition when we are near 60 and looking forward to retirement where do you live i live in ireland my name is anne☺

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I live in East Yorkshire, England, I’m janet , nice to speak , yes it’s not what you expect coming up to retirement. Well we would have been if they’d not put it back to 66 .. but that’s another story .

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I know i can get full pension at 61 i am 60 in feb i worked in england for 3 years and i get a small english pension and like you have to wait till i am 66 for the english pension

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I love your photo i still dont know how to put up profile photo i must get someone to show me

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When you figure it out, pls let me know😊

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Will do

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Dear jnuttal, I was recently diagnosed with PBC . I am sixty two. I have been taking Ursofalk for three months recently had a blood test and all my elevated liver enzymes ? Alt, alk phos , gamma have returned to normal those were the only three that were raised significantly.

My professor at the Royal Free is very happy with results.

I have not really had any side effects with Urso or maybe I don’t notice them.

Drink lots of water cut down on sugar eat healthily . I was told no alcohol which is fine. Also nail varnish , I use Lilli lo lo as it does not contain any toxic ingredients,

I was caught early with mild liver damage. It’s a terrible shock but it gets easier . Trust in your liver specialist good luck

Miriam xx

I

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Thank you xx

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Hi Mira Mari. You have got me confused. Why no nail varnish? Never heard of this before. Take care. Thanks

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I love my new name💖I was answering someone I cannot find the email now.

There are many harmful toxic chemicals in some polishes . Lilli lo lo butter london seem to be safer. I believe the toxins can get into the blood . Please check it out .

I was advised not to use it

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Hi Mirimaur. Sorry about your name (predicted text!). Thanks for your reply. I hadn’t thought about the toxins in nail varnish. I like to wear it. I have gone onto thier website and ordered myself some so thank you. I will use thier products in the future. Have a great Christmas and all the best for the new year 😀

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Hello 195748

There products are good I use the top coat from butter london you can get butter London in some marks and Spencer’s. My hep prof advised not to wear polish . I am a nail tech so I have a using chemicals for many years although I only do gels now and very few . It makes you think what we use and breath in.

Take great care and be well Miriam xx

M

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You are so right in eliminating the toxic nail polish. I learned in research it is dangerous stuff. I have warned friends and family, but they continue to use it. They aren't concerned because they don't have a sick liver, at least not yet.

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Yes I wondered that too as I always have gel nails on ?

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My hepatologist who is a professor told me it is ok to use nail varnish

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Oh well Ballymahanon 2, I guess they all have different thoughts. I am aware that it has been thought that the toxins may enter the blood system. You must do what you think and follow your Instincts and Professor. We are all different .

Kind Regards

Miriam

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You could be right which nail varnish would be safe to use

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To Ballymahon2, I just thought I would try them , believe me , I miss wearing my gel polishes which are different to ordinary nail polish . I’m trying to research if the gels are as bad. Or worse . It’s all very confusing,

Anyway these are the nail polishes which are without eight of the harmful ingredients for exp formaldehyde and toluene. LilyLoLo .www.lilylolo.co.uk and butter LONDON , wwwbutterlondon.co.uk I hope they are safer as they promote themselves to be. Its confusing when your prof says it’s ok and mine says no . Mine also said it’s better not to drink any alcohol , what does yours say? I don’t drink anyway luckily .miriam

Best wishes Miriam x

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My hepatologist said i could have 3 small glasses of wine a week but i dont i havent taken alcohol since diagnosis doctors differ so much its unbelievable you would imagine they would have studied the same medical books!

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To Ballymahon2 I know I have feeling mine is being very cautious with me . He is so kind and caring . He checks everything . Luckily he found out I had PBC where others had overlooked it. He caught it in the early stages after three months on Ursofalk my liver function tests are normal I do have mild liver damage . Which hospital do you go to Miriam x

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Where do you live i live in ireland i was very disappointed with my gp i have elevated lfts for few years only recently diagnosed on ursofalk for 3 weeks i also have mild liver damage hope my bloods improve with urso i go to a dublin hospital

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Dear Ballymahon2 . I was not diagnosed for a while . My gamma was high for quite a while then my alt abd alk phos kept going up and up. I even had my gall bladder taken out as I developed gall stones . My liver surgeon sent me to my dear Professor when my bloods did not improve . He did a fibro scan then and there , it showed mild damage. I then had a liver biopsy he wanted to check for auto immune hep and see the extent of damage. I have had blood tests bone scans vit d levels etc checked. Thank goodness all was ok I could not believe my liver enzymes had returned to normal levels I hope they stay that way.i do hope yours will be ok too , please let me know . I take one tablet of 250 mg three times a day of ursofalk.

I go to the Royal Free hospital in London I live in Hertfordshire.

It’s very nerve racking I had no idea I had this disease. We will get through it and be ok it sounds as though you too have been caught at an early stage . I get blood tests every three months , do you? .please keep in touch with me. Hopefully the Urso will work for you

Miriam x

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I take 3 ursofalk capsules daily i am due blood tests early in new year your situation is like mine i am almost 60 when my bloods were elevated gp refered me to hepatologist fibroscan said mild fibrosis i dont have any side effects from urso hope my blood levels will come down will let you know thanks

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Yes he is Italian . I have to say he is wonderful I trust in him . The liver team at Royal Free are lovely . I’m in my early sixties .like you I donot have an side effects with ursofalk.

I will be so happy if your levels come down too. Don’t forget to let me know Anne . Miriam x

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When were you disgnosed with pbc miriam

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Hello , Anne my diagnosis was confined after my liver biopsy about four months ago

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Its good that your bloods are good since starting urso

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To Ballymahon2 I know I was very shocked in a good way. I just hope they stay that way

Xx

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Did you ever take statins my enzymes started to elevate in 2013 after taking statins i often wonder could this have caused my pbc i havent taken statins for 18 months

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Yes I have been on statins for about ten years . Although I’m very slim and eat sensible I had high cholesterol . I also take h r t . My professor has kept me on both . It’s so hard that know why we have this disease. It could be any worse f these things . We must stay stronger by and pray the Urso work s for us . I keep trying to tell myself it could be worse .

Xxxx

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You must watch your cholesterol though . Has it gone down . What does your specialist say ,Anne x

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Hasnt made any comment about cholesterol think its ok

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My dr took me off statins when enzymes were elevated. I’m about to request he put me back on them. I need them in order to keep cholesterol down. I see a few here who have remained on statins. What do you take?

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My primary doctor told me to come off them i told him i went off them myself 18 months ago as my bloods were elevated a lot of doctors dont like pbcers on statins

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I know, but if cholesterol gets high again not sure what other option to get it down. My dr did tell me at last visit, they have to keep an eye on the HDL.

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Hello dear gwillis , I take Crestor rovastatin. My specialist did say it’s a balance of what to do for the best . He felt I should stay on them I take the lowest dose . I am very slim and careful with my diet but it does not help . I may have the familial type.

Luckily my liver levels have returned to normal with the Ursofalk xx

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Just to add my cholesterol is normal with the statin

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G’morning! I was on simvastatin 40 mg. I’m like you, very slim & mine is familial. I actually read an article on statins last night. I emailed the link to ballymahon (Anne). I do know HDL is so important. As long as it is high enough, it offsets bad ldl. But my hdl has probably bottomed out by

now. That’s what scares me. Glad you’re doing well. Merry Christmas 🎄

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Good to talk to you again Gwillis , you weee so kind to me when I was so scared. The minute I stop my statins my cholesterol goes up. I’m ok when I take them. My L F T s with Urso seem to have returned to normal even with taking the statin and dare I say h r t !! Xx

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Thank you & nice to talk to you too. Yes I’m sure mine went back up pretty fast. Scary. I’m so glad your numbers are normal now. Keep up the good work🌹

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Thank you Gwillis . I will try I do not know if it’s me or the Urso .you keep well and take care

Love to you Miriam x💖💞

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Thank you. You do the same💗

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Were your blood tests ok after you started taking statins when did they start to elevate

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I agree i notice a lot of people getting pbc in their 60s i am 60 in 2 months time

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I see you live in england miriamthe royal free is a very good hosp my name is anne ballymahon is the townland where i live

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It’s a very good hospital Anne. Professor pinzani is the kindest sweetest person . He knows how I worry but he always calms me down and reassures me. He will always email me if I’m frightened about something. I pray the Urso will work for you .Miriam x

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I have heard his name mentioned on this site think he is italian i have heard some positive comments about him

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Yes he said to wait three months but I fact it was earlier than that . X

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Miriam did you wait for 3 months for your blood tests after taking ursofalk my hepatologist told me to get bloods done in 2 months but i am thinking of waiting for the 3 month mark as it might give a better result

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Medicine is not as exact a science as you would like to believe. A lot of it is subjective, based on doctor's experiences & training. My doctor also said I can drink every now & then. I am a social drinker; didn't drink that much to begin with.

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Thanks for advice about the nail polish

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You will be ok xx

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I was diagnosed in August, I am 48. It was a shock at first, but now I've learned that it's not going to kill me. I have had no side effects from urso. I gave up smoking and I feel better for it. The only thing I miss is a nice brandy & coke or 10 lol. Now I just have a few glasses of low alcohol wine on special occasions.

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I was diagnosed 2 years ago, like you by bloods for something else, no symptoms aged 49. Never heard of PBC before, started on Ursosan (NZ) I am really aware of what I eat cut down on the processed foods haven't had alcohol in 2 years, my choice. I figure my liver is working hard enough why put it under extra strain. I also increased my exercise. Feeling good, liver readings are at a normal level now waiting for the results of a dexo scan too. Keep taking the tabs and put PBC to the back of your mind the best you can.

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Thank you.. hope you continue keeping well 😊

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