Pbc newly diagnosed

[Stlucia1936]

Hi there I was wondering if anyone has this in whitehaven workington Area

[butterflyEi]

If you join the PBC Foundation, free to subscribe, in the Bear Facts magazine it shows where the local groups are. You can also join in on their virtual group meetings. There are also Facebook support groups.

[Stlucia1936 in reply to butterflyEi]

thank you

[Rialto2]

Hi, I'm from Whitehaven

[Stlucia1936 in reply to Rialto2]

Oh Hi just wondered if you have Pbc and are you a member of a group, Just that you really have to find your own info on this disease I've found, I've just had telephone consultation never actually seen anyone about it

[Rialto2 in reply to Stlucia1936]

Yes, I have PBC - diagnosed around 2 years ago. I've only ever had telephone consultations with consultant at Carlisle - never had a face to face. Had a fibroscan and a bone density scan last summer.

[Stlucia1936 in reply to Rialto2]

Are you dealing with it OK, and responded to urso? I responded quickly and got almost normal bloods after 4 weeks, can't tell you how relieved I was I hope it continues, just had fibrascan which was 7.5, it has really knocked me for six this diagnosis and didn't really get any advice from GP I had to find my own help through Pbc foundation and listen to their you tube channel every week, Professor Jones is brilliant and very reasurring

[Rialto2 in reply to Stlucia1936]

I''m dealing with it ok . Like you I was shocked and devastated when first diagnosed especially after reading some internet items. This site, Prof Jones book and the Foundation have been very reassuring and helpful. GPs don't seem to be very aware of the condition unfortunately. Are you under the gastro consultant at Carlisle? Thankfully, I don't have the awful itching some people mention. My ALP results are still high although lower than when I started on Urso. My fibroscan results were within the normal range and bone scan showed a trace of osteopenia.

Great news your bloods are almost back in normal range - sounds like you're responding well. Do you have any other symptoms?

[Stlucia1936 in reply to Rialto2]

I have no symptoms at all I hope that continues, it's good to speak to others that have it, My consultant is Dr porrez Carliske although I've never spoken to him yet, you can request a face to face if you wish, I'm going to do that next time, Prof Jones Says it's our right and we should contact for advice any time, you can contact their secretary and request advice because as you sat our Gp s don't seem to know much about thus disease, are you taking meds for ostepenia? I haven't taken them yet because I have concerns about this Alendronic acid, I'm battling whether to take or not but will probably have to, seems really unfair to have both doesn't it

[Rialto2 in reply to Stlucia1936]

No, no meds for the osteopenia - the consultant (same as yours) just asked Gp to test my calcium and vitamin D levels which were both fine.

[DonnaBoll Administrator]

Welcome ! My name is Donna. Take a breath... it's ok. We have all been exactly where you are right now being newly diagnosed. I facilitate this group - a part of The PBC Foundation's support for those with PBC. The post below about joining The PBC Foundation is such great advice. They offer so much in the way of support services, education, self care tools and local area meetings. And it's free!

Please be sure that once you are diagnosed that you begin taking the first line treatment proven to greatly slow down the progress of this disease. This medication is called Urso. I hope you are already on it. It is ALWAYS based only on your body weight - never any symptoms or results from your lab work.

pbcfoundation.org.uk

From your post, I assume you live in the UK. Education is so important to knowing the care you should be receiving as well as general knowledge about the disease itself. I strongly encourage you to purchase Dr. David Jones's book (on Amazon) The Definitive Guide for Patients With Primary Biliary Cirrhosis. He is a the leading expert in the field. The entire book is written so everyone can easily understand it all. There are 2 editions. At least consider buying the second one. You will be so glad you did. Please don't google for any more information. It is so often outdated and even inaccurate.

One of the most important things to remember is that PBC is not a death sentence by any means. Most die with the disease - not from it. You can still live life to the fullest!

There is so much I want to share with you... Please reply here or reach out to me via the 'chat'.

[Stlucia1936 in reply to DonnaBoll]

Thank you such a refreshing and optimistic post from you, yeah I'm on Urso and after 5 weeks nearly normal bloods just had fibrascan which was 7.5 had bone scan which showed osteoporosis which is devastating have to deal with that as well as this 🙈 trying to be positive, consultant did say I likely have a mild version because I responded so quickly with urso I am hoping this continues, was very frightened on diagnosis and reached out to pbc foundation, I bought Prof Jones book and I am listening to him on the channel I only wish he was my consultant he is very reassuring

[DonnaBoll Administrator in reply to Stlucia1936]

It's so nice to hear from you again! Isn't Dr. Jones' book wonderful?! Love anyone can understand what he writes. I'm sure you will refer to it often, as I do. Osteo is one of the most common autoimmune diseases, along with Sjogrens Syndrome, that those with PBC have. Best advice is to keeping moving as best you can. I do water aerobics twice a a week for last several years. Any movement on a regular basis does make a difference. Another great perk from The PBC Foundation is their weekly Q&A sessions with a PBC expert on Thursday. Check their FB page for recorded videos of all the sessions. Ask anything.... no question is silly. We all learn from what others ask..... remember your lab work should be repeated every 3-6 months according to the Standard of Care. Hope we can chat again.

[Stlucia1936 in reply to DonnaBoll]

thank you yes would love to chat, I listen every week to PBC channel and have asked questions to Prof Jones, he's so good

[DonnaBoll Administrator in reply to Stlucia1936]

There is so much great information there..... remember all of them have been recorded on their FB page.