Just Diagnosed

[lovesoccer]

Hello. I have just been diagnosed with PBC and am scared. Thank you for any support and advice you can give. I am grateful for a community like this.

[iagra]

Hi! It's a very natural reaction to PBC diagnosis. We've all been there. But, don't be scared. It is chronic, but very slow progressing disease. You'll hear people often saying - you'll die with PBC, not from PBC. Many of us have no symptoms or mild symptoms. One of the symptoms is itching. There are severe cases of itching, but, I don't know how often it happens. Most important to keep your spirits up, continue to stay active, live full life and don't think about the disease. It's there, but, it doesn't mean that it will or should take over your life. I'm sure you'll get a lot of input from others encouraging you to stay positive. I've had it for about 12 years, formally diagnosed 6 years ago. Pay attention to your diet, eat healthy and stay active. You'll be fine. All the best!

[Abstractionist in reply to iagra]

I always believe that knowledge is power, and the more you know the less scared you'll be. I hope you have connected with a good hepatologist, and if not you should make that a priority even if you have to travel. Take your Urso religiously, don't drink alcohol or take Ibuprofen except when absolutely unavoidable, eat a healthy diet, stay active and live your life to the fullest.

[Mofusdog]

I agree with the other replies. I remember having the same scared feelings you are experiencing. I was able to put things in perspective when speaking with my hepatologist. Having pbc is not much different than having high blood pressure. You take medication to control it and monitor the condition. I hope this helps you wrap your brain around the issue.

[gillrich]

Hi do not worry join the pbc foundation set up 26 plus years ago by a suffer from Edinburgh UK . it is a charity lead organisation and it it always giv3s the best accurate and up to date info. Pbcfoundation.org.uk free to join but donations most welcome. They might even be able to tell you who might live near to you with pbc . They have 1500 plus members world wide x take care and yes take your urso and make sure it is the correct dose for your weight xx

[rderezin]

You're going to be fine....I have had it for 28 years before URSO was an approved treatment....take you urso to help your liver function, get your regular blood work and live your life.

[Sam1121]

Oh I know exactly how you feel! I was diagnosed by blood tests in 2016 at 54. Take your Urso, eat as healthy as possible without going crazy with it. I feel fine and always have!

[lovesoccer]

Thank you all for the support! I was able to meet with my hepatologist last week, and that helped put this in perspective. Thankfully it was caught fairly early, and I’ll be starting on Urso as soon as the pharmacy gets the meds in, hopefully Monday.

[W015449 in reply to lovesoccer]

Yay ! you will be fine. I was very scared in the beginning but I don’t think much about it these days other than taking my normal pill routine . They caught it early for me too. My doctor said I will probably die of something else before the PBC takes me.

[lovesoccer in reply to W015449]

So appreciative of all this support. What a great group.

[Sam1121]

Hey! Just had my fibroscan done and it’s F0-F1 the same as it was when I was diagnosed in 2016!!! I feel great! I eat well 95% of the time, and play tennis a lot and take my Urso ! You will be fine!!! Ohhh I’m 60.

[JBH2000]

Greetings lovesoccer!! Don’t be scared! Y numbers have been steadily going up for years- we kept a close eye on them. About 18 months ago I had to start medication- Urso.There are times when I feel tired, or my joints ache - but overall, I eat healthy, ealk daily, and have a drink or two when I feel like it (usually during a social gathering on the weekends).

I get bloodwork done every 3 months. The best advice I can give you is you will NOT pass way from PBC- you’ll just have it. It’s definitely not a death sentence. Stay active, reach out for support, and stay on top of your liver enzymes. You are NOT alone.

Please feel free to reach out anytime.

[lovesoccer in reply to JBH2000]

Thank you so much for the support!

[Blueberries1970 in reply to JBH2000]

Hello.. I am new to all this the Dr suspects that I have PBC .. ALP slightly above high normal for 7 yrs and tested for ggt 1 point over normal. Fibroscan totally normal. Gave me the choice to start meds to lower my alp to mid normal range. My question is how long did the dr monitor you before he started you on the medication? I have no symptoms just slightly high ALP and GGT and neg antibodies. The dr said if he were me he would do labs again in 6 months and an ultrasound to reevaluate med use.

[AVE7]

You are not alone! I am also very scared. Newly diagnosed with PBC (April 2022) Started the medication Urso 500mg 3 times a day. Alkaline levels are in the 200's. The hangout feeling (almost every morning), itching is horrible. Its a real bummer feeling so tired, from doing very little. It's embarrassing. I feel lazy. I am a hard worker (back in my 20-30's) now steps, ladder climbing, walking in stores, basic self care all seem to make me feel extremely exhausted. I am hoping the medication is going to help bring my energy back.

[lovesoccer]

Thank you, AVE7. You’re not alone either. This group offers great support. I started Urso in June, and my numbers have already shown an improvement. Two are in the normal range now, and AP is down to the hundreds, so I’m hopeful.

[OrangeTulip]

Hang in there…I was diagnosed in June and I am still trying to figure it all out. Have faith. I think life style changes have helped, fasting, reducing sugar and processed foods, exercising etc. This blog has really helped too…I went through shock, denial and now I have moved into the acceptance stage…it’s all about one day at a time.