Newly Diagnosed

[ETW1]

Hi, I was diagnosed with pbc on Monday and have been started on Ursodeoxycholic acid 1250mg a day,feel a bit scared.

[LindyRich]

Hi there

That is a feeling we are all familiar with at first.

It takes a bit of getting used to when you are first diagnosed.

Some advice we all give to anyone new is: dont Google it. Old, inaccurate and incorrect information on there. Best thing you can do to calm your fears is to educate yourself about pbc. And the number one place to do that is the pbc website. Pbcfoundation.org.uk. it is free to join. You can download the compendium to refer to anytime. It is up to date, easy to understand and accurate.

Im sorry you have the pbc diagnosis but it is a slow progressing condition and most people die WITH it not OF it.

Please feel free to ask questions on this group. It is friendly. Bear in mind though we are not doctors but are fellow sufferers or their relatives.

Take care

Lindy

[ETW1 in reply to LindyRich]

Hi Lindy, Thank you for your prompt reply. I have unfortunately googled it like crazy and have scared the living daylights out of myself! I am waiting for a fibroscan, other than feeling tired I'm not sure I have any symptoms. Also this week I have been diagnosed with Psoriatic Arthritis and my dr has given me Sulfasalazine to start on Monday. Have you or has anyone reading this heard about this drug? Thank you, Elaine

[LindyRich in reply to ETW1]

I have read somewhere that Psoriatic Arthritis is also an auto immune disease also. It's not unusual to have more than one.

I have Psoriasis, pbc and auto immune underactive thyroid.

Sorry i don't know anything about Psoriatic Arthritis or the medication for it. Do hang around though I'm sure someone will.

Try not to worry. If you respond to the Urso it will slow the PBC down.

Which country are you in?

Lindy

[ETW1 in reply to LindyRich]

Hi Lindy, I have Psoriasis so my dr said that is why I have now got Psoriatic Arthritis. I have a lung condition too, which apparently is also auto immune. I live in Essex, Uk.x

[LindyRich in reply to ETW1]

Another good website is livernorth.org.uk It is based at the Freeman hospital Newcastle. You can get a dvd on pbc.

[LucyH16 in reply to ETW1]

Hi

Really interested to know about your lung condition, what are your symptoms?

Thanks

Lucy

[ETW1 in reply to LucyH16]

Hi..well just like Pbc it was discovered by accident, I have over the years always suffered chest infections which sometimes took as much as 8 lots of antibiotics to clear it. Well 2 years ago I had breathlessness and my so called an ambulance. At the hospital my heart was fine, bey they discovered something on my lungs. The funny thing is it was ther 7 years earlier I found out, when I broke my ribs and had an xray. Nobody mentioned it back then, I had a bronchoscopy but they couldnt see anything. They trated it with predisinone which it responded to, but when I stopped it came back. They couldn't give it a name but are treating it as Cryptogenic Organising Pneumonia.

[Ktltel in reply to ETW1]

ETW1,

Hello, I was diagnosed with PBC last October. I'm having some symptoms this week I haven't had before... It is scary.

This past April I was diagnosed with seronegative RA. I was put on sulfasalazine too. It takes a few months to really work but it's totally helped me. Hasn't interfered with my liver. They keep checking my levels every 3 weeks. So far so good.

One thing with sulfasalazine, drink plenty of water.

Stella ♥️

[ETW1 in reply to Ktltel]

Thanks Stella, are you on Ursodeoxycholic too? Im just a bit nervous about it all, been googling too much.x

[Ktltel in reply to ETW1]

Yes, I am on Ursodiol too along with Sulfasalazine. No bad interaction between the drugs and my liver seems to be tolerating it OK too.

Yeah, try not to google too much, this is the best place to get up to date and accurate information on PBC. ❤

Stella ♥️

[Ktltel in reply to ETW1]

ETW1,

Funny and awful thing happened today. For the past week I've been having upper right quadrant pain.... My alk-phose went up too, 35 points. So today I had my doctor run pancreatic enzyme labs. I've had this pain before.

Just FYI, sulfasalazine does sometimes cause pancreatitis.

Ugh! It's been working so good for my RA. Now I have to stop taking it.

Stella ♥️

[ETW1 in reply to Ktltel]

Oh no! So sorry to hear this. I wish I understood all the tests jargon. My dr has wrote on my card that my alk phos is 173, my alt 56 and ggt 286. Plus other stuff.x

[Ktltel in reply to ETW1]

You will catch on quickly. Those are all liver enzymes numbers. Yes I'm bummed out. I may have to go on Methotrexate instead of Sulfasalazine. Ugh!

How are you feeling over all? Any pain?

Stella ❤

[gwillistexas in reply to Ktltel]

Hi there. I have looked st all labs & not seeing GGT. Which lab test might it be in?

[Ktltel in reply to gwillistexas]

That I'm not sure. I've never seen that on my test. I'm not sure what ggt stands for either.

Stella

[gwillistexas in reply to Ktltel]

I’ll check it out. Tks!

[ETW1 in reply to gwillistexas]

Hi ggt is gamma-glutamyl tranferase, if it is raised as well as alp it points to liver diseases.

[gwillistexas in reply to ETW1]

Thank you. 🌸

[gwillistexas in reply to ETW1]

I will have to ask dr about ggt. None of my panels show this test. Interesting 😊

[ETW1 in reply to Ktltel]

Just stomach pains really, not sleeping very well. Only started Sulfasalazine yesterday, and only been on Urso 1 week. Hope you feel better on the other meds. But I will just mention, my dr at rheumatology said I couldnt have Methotrexate thats why he asked me to ask hepatology could I have Sulfasalazine. X

[EileenUSA in reply to Ktltel]

Stella,

So sorry to hear that the sulfasalizene might be effecting pancreas. Ugh.. we can't win sometimes. We Take something to treat 1 thing but it hurts us elsewhere..

Keep your hope up. Let us know how your tests go.

Big hug from Chicago!

[Ktltel in reply to EileenUSA]

Thank you EileenUSA,

We fall... But we get back up. I'll have to research my options again. I know there are others with PBC who also have RA and are on Methotrexate. I just need to hear from them. I'll put the word out soon. Right now I just gotta chill and not let this get to me.

Thank you ❤

[gwillistexas in reply to Ktltel]

Prayers for you🌷

[Ktltel in reply to gwillistexas]

Thank you Gwillistexas. ❤

Stella

[gwillistexas in reply to Ktltel]

❣️

[Ballymahon2 in reply to LindyRich]

What is an autoimmune disease

[LindyRich in reply to Ballymahon2]

When working properly our immune systems attack viruses, bacteria etc. Auto immune is when our immune systems mistakenly attack us. No one knows for sure why but there are a few theories about. I hope this helps.

[LucyH16]

Hi

I was diagnosed on 31st August this year, after years of itching and incredible tiredness. I read everything and worried myself to death. Couldn’t work out what I was supposed to eat, had the fibroscan 4 weeks ago and a liver biopsy on Thursday. Take the same dose of Uroso as you, biggest problem is remembering to take them!! My biggest loss is alcohol as although not a big drinker I did like an odd G&T 😢

My biggest comfort is from the support groups that are about.

Good luck with your new diagnosis, I just get used to saying I have a chronic liver disease and sometimes I can’t do what I used to!

Lucy

[ETW1 in reply to LucyH16]

Thanks Lucy, I was told by my gp no alcohol, but my consultant said as long as you dont go over legal units that a woman should have. Very confused!

[cazer]

don't worry you will be okay... its a very wierd thing to be told you have, but you are amongst friends on here... ask what you like.... but don't assume the worst... lots of people get very few symptoms itsa very mixedbag.

my very best wishes to you and hope you feel calmer once it has sunk in. cazer

[ETW1 in reply to cazer]

Thank you, think I have overloaded myself with information which is sometimes conflicting, especially the Sulfasalazine with Ursodeoxycholic.x

[gwillistexas in reply to ETW1]

I always ask my pharmacist before I mix meds. I trust them, that’s their field of expertise.

[ETW1 in reply to gwillistexas]

Thamk you.

[Ktltel in reply to ETW1]

ETW1,

I'm interested to know what you've read on taking URSO and Sulfasalazine together. My hepatologist approved it for me back in April.

Stella ❤

[ETW1 in reply to Ktltel]

Hi, what happened was I have just been diagnosed with Psoriatic Arthritis and was visiting the consultant for first time. I told him my gp said I had Pbc and that I was going to the hospital to see them about it. Anyway he said because of the pbc he could only really suggest I take Sulfalasalazine, but he wouldn't prescribe it until I ask consultant at hepatology. I went last week and the consultant said I have Pbc and put me on Ursodeoxycholic 1250mg a day, he also wants me to have fibroscan. I asked him about the Sulfasalazine and he said its ok. However when I went back to rheumatology and told him I could have it, he looked shocked and said ok because the consultant said you can I will give it to you. So you can understand why I feel a bit wary.