Pbc

[Bellalou10]

Hi I was diagnosed yesterday with Pbc and I am absolutely terrified. My alt has got worse with every blood test this year and is now 421. I need all the advice I can get. I have no symptoms at all and would not know I am ill, only the blood tests that have revealed this. I am having a biopsy in the next 10 days and the consultant said I might need steroids too. Any advice greatly received. I am 42 with 2 young children so the worry is making me feel ill. Thanku

[Hidden]

Hello again Bellalou10.

I never had a biopsy due to symptons, bloods and antibody AMA, was enough for diagnosis of PBC.

I am a bit puzzled regards to the mention of steroids and have just had a thought maybe it is something to do with another blood check that is used in liver disorders that I have each blood check and it is known as the GGT. Apparently this is a gauge of liver inflammation. Mine has been abnormal since the year I was diagnosed with PBC, 2010. It has come down over time and my bloods remain abnormal but not abnormally so and I am still here almost 6yrs on from starting to itch. (I have been on urso for almost 5yrs now.)

You'd not know I had this PBC either looking at me. I have found it to be a rather strange thing to have at times.

I originally started to itch, one of the commonest symptons of PBC and I still itch almost 6yrs on.

If you are currently asymptomatic then I hope that it remains that way. I think once the initial shock of it has passed then it is a good thing, trust me, to start to look forward and then start clocking up time and memories. I wasn't sure how I'd be 5yrs down the line from being informed I had PBC but I am still here. I am not far off being 52. Even though my life hasn't been that much on an even keel in recent years due to having this PBC making certain life changes and seeing the world differently can make you cherish things even more than you thought you might have done previously.

I had to come to terms with the fact that after being widowed with 2 young children when I was 29 I had managed to raise my children on my own into good standing adults and thought I'd got my life back to start living much more freely again within a year of being remarried I started to itch.

I have found it hard and felt guilty due to finally meeting up with an ex-soldier who I was writing and corresponding with for 12yrs when he was based overseas that within 6 months of us meeting up we married in mid-2009 to just get by our first wedding anniversary to be informed I had PBC. I lived with my former late husband when he was sick for several years so know what it is like.

But we've managed to enjoy time together as we are both free to do so and hope to do so for many years to come now. I think we never know what is round the corner and I resolved long since to not keep asking why it had happened to me who had never really frequented a doctor at all over the years to now be in touch with the surgery several times a year whether it be for a PBC check or a prescription for urso. I'd rather not waste time on PBC nor think about what it might become as to me that 'what it might become' might never just become that.

Enjoy your children once you have some plan in place with the medics regarding PBC and before you know it the years will start clocking up and you'll still be getting on with life best as you can.

[Bellalou10 in reply to Hidden]

Thankyou peridot for the support

[Donna2641 in reply to Hidden]

Peridot,

What was your GGT at dx and what is it now? If u know.

Thanks

[Hidden in reply to Donna2641]

Hello again Donna2641.

I got my blood results out from back in the year I was diagnosed and just prior to diagnosis my GGT was 642. That had risen during that year.

After being diagnosed Dec 2010 and starting urso it started to come down quite rapidly and was 172 Feb 2011.

Currently it stands at 231 but I've not had any major changes with that since diagnosis. The GGt bounces up and down it seems but so far not gone above the current reading in the 5yrs taking urso.

I noticed after diagnosis that a few of the elevated LFTs that had climbed during 2010 prior to being informed I had PBC there was a natural drop of them. August 2010 was the final ones I had at GP surgery and then I was waiting for early November when I saw the hospital consultant for the first time. The bloods he took that day there was a pretty distinctive drop naturally. This is why I do think that with PBC there can be a slowing down at intervals if mine dropped without any urso.

[Bellalou10 in reply to Hidden]

Hi peridot I too was told by a dr that my alt/ggt can fluctuate so although at 421 at the mo it can have dips and flare ups. I am holding on to the fact I might not yet need urso but think I'm kidding myself. Think my ggt is 216 x

[DonnaBoll Administrator in reply to Hidden]

Glad your numbers are down but I have to question why no Urso has been prescribed. This is proven to be the first line treatment for PBC. Have you had this discussion with your doctor?

[dianekjs]

Hi Bellalou, PBC is not a death sentence, and many people live normal or near-normal lives with the disease, although it takes an individual course. The fact that you have no symptoms is encouraging, and as many here will tell you, you are more likely to die with PBC than from it. Urso is the drug used to slow progression and that controls symptoms for some. If you have not been started on it, you should get a second opinion and inquire about it. A biopsy is not always necessary for diagnosis, although some doctors want one. Is your doctor a specialist who has extensive experience diagnosing and treating PBC? You don't mention your AMA - I assume this tested positive? A positive AMA is the main test that flags for PBC, it is highly specific for the disease.

With your elevated liver enzymes, regardless if you have PBC or not, you need to start right away to make changes to protect your liver and overall health, if you haven't already done so. That means no alcohol, first and foremost. You should also dial way down on sugar and processed foods in general. Focus on real, whole nutritious foods, organic and prepared at home whenever possible. PBC can be successfully managed much of the time, try to stay calm and proactive if you can - stress won't help. Best of luck to you and let us know how you are doing as you sort through this.

[Bellalou10 in reply to dianekjs]

Hi Dianekjs

Thankyou for your message. My consultant is a liver specialist and yes he wants a biopsy done before he will put me on urso, he is 99.9 sure it is Pbc but obviously needs confirmation so he can stage the disease. I don't have any symptoms but he said that dosent mean I am in the early stages. I am worried I will lose my hair with taking urso along with other side effects. I am not sure about my ama I know my alt and ggt were high and presume my ama were high too. I will check. It does feel like a death sentence at the moment and I just want to run away from it all.

[dianekjs in reply to Bellalou10]

I know it is very scary at first, but please try not to despair. It is NOT a death sentence, and may turn out to have minimal impact on your life - everyone is different. The liver biopsy itself is not bad, so don't waste energy worrying about that. Just follow instructions carefully and you'll be fine. Urso's not like chemo, not everyone experiences hair loss, and for those that do, it's not usually severe. And many people don't have side effects and feel better on Urso, so try to stay positive and cross those bridges IF you come to them. Many here have been diagnosed without a biopsy, but with no symptoms and concerning blood tests, it sounds like a reasonable next step. Use this forum for support, there are many knowledgeable and kind people here to help you come to terms with your (pending) diagnosis. Hang in there.

[Bellalou10 in reply to dianekjs]

Thankyou your words are a comfort x

[DonnaBoll Administrator in reply to Bellalou10]

A liver biopsy is usually no longer needed for a diagnosis if some one has a + AMA and elevated liver enzymes. Never hesitate to have a discussion with your doctor about why he wants a certain treatment plan for you. This is according to the Standard of Care in the AASLD Guidelines. Symptoms can be different in every single person who has PBC. Always remember that your numbers don't correlate with symptoms. Early diagnosis can have multiple symptoms or not at all . Many, even in late stages, may have no symptoms at all and never progress any further in the disease. I hope you can start Urso as soon as possible to keep any damage to bile duct cells or live cells. This is so important to take.

[DonnaBoll Administrator in reply to dianekjs]

this is all great advice for anyone who is newly diagnosed. It is so important that everyone who has this diagnosis takes Urso. Thank you for such a supportive note to her.

[Hidden]

Being newly diagnosed can be a frightening however try not to worry the best advice I can give, if you have not done so already is call the PBC Foundation and speak to them. The link is at the top of this page, they will be able to answer all your questions with clear upto date information. Take care.

[PBCFoundation PBC Foundation]

Hello Bellalou10,

I am going to send you a direct message

Best wishes

PBC Foundation

[chynablue]

Hi Bellalou! I was diagnosed yesterday, too. This site has been a great help to me. I am not worried anymore because of the support and great information here. Keep us posted on how you progress, and try not to worry too much!

[Bellalou10 in reply to chynablue]

Hi chyna blue

I so wish I was not worried after a day's diagnosis, I admire your bravery. I hope you feel well in yourself and it has been detected early on. This is the news I am waiting for😢 take care and if you ever want to compare notes I'm more than happy

[chynablue in reply to Bellalou10]

Thanks Bella! Luckily my son is 14 and very independent. I don't have people that depend on me so much. Let us know if we can do anything to support you while taking care of two young ones. Even though we are just on the internet, it helps sometimes

[Jo53]

Hi Bella and China. I was diagnosed in August and like you I was quite worried about it to begin with. I read about it on various sites but after finding the foundation and this site I stopped. There is too much misinformation out there. I have been on 1000mg Urso daily with no side effects. It has now got to the stage I don't give pbc a second thought. Live your life as normally as you can and stay positive. Good luck to you both and stay well.

[chynablue in reply to Jo53]

Good advice! Thanks Jo!

[Bellalou10 in reply to Jo53]

Hi jo

That's the best news I could wish to hear, long may it continue for you x

[DonnaBoll Administrator in reply to Jo53]

thanks for such an encouraging post... live life for sure!

[Mrsbry12]

Hi is anyone taking ursofalk capsules like me How do you get on with it.

[DonnaBoll Administrator in reply to Mrsbry12]

I have taken Urso for over 30 years with no side effects. I took it for 20 years before my liver transplant... and continue to do so now almost 19 years later. everyone reacts differently.. don't anticipate any problems.

[Tracy181]

Good morning. I so completely understand you worry and fret. I am 41 and have 2 Littles at home as well. I was diagnosed just about a 1 1/2 ago. It was just deviating to me. I had a new baby and a 6 year old and all I could focus on was that these boys were going to have a life without a mother. It was crushing. No words would help me, I just couldn't believe that I was going to be ok. After the initial shock, I started taking some urso (I did have some small reactions but all has evened out now and I am back to normal). At my first check back my bloods were fantastic, I felt well. I still get scared when I go for my check ups, I just can't help it. But, I am happy to report that I have been able to come to terms with the diagnosis and feel like I am going to be OK if I take care of my body. I lost some weight, watch my eating better and have limites my drinking (my doctor said that I could still have 3 a sitting but, I am not that kind of drinker) and try to watch the medicines I take. I just think of my body as a car. No matienence when it is new and now that I am getting older, I have to do some matienence and treat it a little nicer. Good luck. I hope that with time, you are able to relax a little bit

[DonnaBoll Administrator in reply to Tracy181]

such an encouraging post.. thanks for sharing.