New and confused about what to do

[donikeeth]

I was diagnosed 8 yrs ago with PBC. At the time my doctor told me there was no cure for this. I guess I was in denial, I never saw my doctor again for 5 years. Again he didn't really give me any reason to come back. So, this time I waited 3 years and just went back, he ordered a biopsy. I am now going to go in on Wednesday for the results. He has never put me on any meds. How can I know if he knows what he is doing? I suffer with extreme fatigue, some itching, and some abdominal pain. Any advice? My Dr is a gastro guy.

[Flowerwh]

If you were diagnosed with PBC, you should have been put on urso 8 years ago and followed by a dr. yearly at least. I would seriously be looking for a another Dr. who knows how to treat this illness. I hope your biopsy results show little progression.

[ninjagirlwebb]

I agree with Flowerwh , your doctor should have told you that while there is no cure for it, its progression can be managed with Urso.

This is water under the bridge, but your doctor should have followed up with you to ensure you receive your treatment as needed. I am just so surprised that he didn’t tell you to follow up. But I understand the denial, because that was me too.

My gastro actually monitored my elevated LFT’s for a while before he “beg” me to get a biopsy. I resisted because I was in denial or stubborn. So he recommended a hepatologist, liver specialist to me who he said, hope can persuade me. I definitely needed the biopsy & was put on urso right away once the biopsy results confirmed pbc.

That being said, pbc is a slow progressing condition. Hopefully you didn’t progress too far along. I think I had it for a while too before the biopsy.

You can’t change the past, but try to find a hepatologist who specializes in pbc or chronic liver conditions so that you can get the best care possible going forward.

Take Care,

Haley

[Ballymahon2]

I was diagnosed 2years ago from blood tests and i was referred to a hepatologist who prescribed urso my advice to you would be to see a hepatologist as soon as possible and get started on the meds

Also contact pbc foundation in scotland who will help you a lot with information etc

[donikeeth]

Could the reason be he never put me on Urso because I also have Non Alcoholic Fatty Liver disease? For some years I have been dealing with extreme fatigue and some pain. Lately I have started getting the itching. I don't think anyone understands the extreme fatigue.

Thank You guys for answering back, feels good to get advice from people that are going through the same thing. I am going to get in touch with University of Texas Southwestern Medical School tomorrow, they have a Liver Clinic.

[PCS11 in reply to donikeeth]

I think that urso is sometimes given to people with NASH, too. Either way, you think he would have considered it.

[ninjagirlwebb]

No, pbc is treated with urso regardless of whatever else you have going on unless you can’t tolerate the urso.

Good on following up at the liver clinic. Get an appointment as soon as you can. Get an actual copy of your biospy results & whatever bloodwork results you have from when you first was diagnosed with it & any labs from then to now. Have that for the appointment so that they can have your history.

Haley

[donikeeth in reply to ninjagirlwebb]

I will get everything I can to take with me. Thanks so much. I have read on this forum that the Urso can cause you to loose your hair, does that last as long as you're on it? Do you stay on the urso forever?

[ninjagirlwebb in reply to donikeeth]

Yes...you have to take urso every day. Not everyone feels the effects of urso the same way. You might not lose hair.

[Ballymahon2 in reply to donikeeth]

I am on urso for past 2 years and my hair has not thinned at all

[HealthyChik in reply to donikeeth]

I read all of the side effects of Urso and was concerned as well, but so far I've had no hair loss or any side effects at all. Good luck with your new doctor.😊

[Michi1 in reply to donikeeth]

It may be that PBC causes you to lose hair. Before I was diagnosed I went through a phase where there was hair everywhere. I have tons of hair and it was hardly noticeable, but my cats had nothing on me! Also, ask the people at Texas about whether you even need a biopsy. It's not standard of care in Europe anymore. It's like a core sample that only sees a tiny fraction of your liver and it's invasive. They can get much of the same information from a special ultrasound called a fibroscan or much more information from a new kind of MRI called an MRE which looks at your whole liver.

[donikeeth in reply to Michi1]

I have already had the biopsy last week, will get the results on Wednesday, I don't know if it's going to tell much. I'll see. I had an MRI about a year ago, and an ultrasound a month ago.

[Michi1 in reply to donikeeth]

The fibroscan and MRE are special. It’s not the same as just getting an MRI or an ultrasound, and not every doctor has access to them.

[Luciv in reply to donikeeth]

On urso for 1.5 years and my hair became thicker, shinier and much healthier after starting treatment. Stage 2, and I feel so much better.

[livernonions1 in reply to donikeeth]

I haven't experienced any hair loss but I have been using a great product called Nutriox. I get it at Sallys beauty supply. It will keep you from hair loss.

[Gaspereaux in reply to ninjagirlwebb]

Wouldn’t they be able to bring all that up on their computer screen? Or if you have a laptop or computer, are you able to access your health records yourself to print off your history of lab tests, imaging, etc?

Whatever method is followed, you are right Haley, good on following up at that clinic. Please keep us all posted, Donikeeth. You have all our support!

‘

[Ballymahon2]

Yes urso is for life but its ok to take i find it can cause constipation so i take lots of fibre i dont have any other side effects

[butterflyEi]

Copied below is the EASL guidelines and although the E is for European I believe that the USA also follows similar or has the same guidelines. Also the PBC Foundation the host of this page is a good source for correct and up to date information, although based in Scotland they have a world wide influence. I see further down you are going to a specialist clinic for a second opinion, please come back and let us know how you get on. Many of us on here waited many years to get a diagnosis and treatment and although you have been given a diagnosis like many of the others I do not understand why you have not been prescribed medication.

The PBC Foundation web site is PBC.org.uk they also have a handy app which you can download once you are a member, free to join. Look at some of the back copies of the Bear Facts magazine in particular there is an article written by Prof. Neuburger on the "itch" in the spring 2015 issue.

pbcfoundation.org.uk/upload...

[donikeeth in reply to butterflyEi]

Thank you so much, I am going to print this document and take it on Wednesday to my Dr. I want to find out why I was never offered Urso or any hope. I am only seeing him to get my biopsy results. I have an appointment with the Head of Liver Dept. at University of Texas Southwestern Medical Center on May 21. I will have all my history and test results to take, I am sure I will get some help there. I hope it's not too late.

[butterflyEi in reply to donikeeth]

Come back and let us know how you get on. Take care

[livernonions1 in reply to donikeeth]

There is a liver study in Arlington Texas you might want to ask them about. I did it over a year ago and my liver improved.

[Sandymh]

My liver consultant is a Gastroenterologist. Couldn't ask for anyone better. Maybe I got lucky when assigned to her. Your Dr should be qualified enough to deal with your problem. If not ask to see someone else. It's not always possible to control our itch. I suffer horribly with it even though on medications for it, but it could be worse without them.

Lethargy is so debilitating. I have learnt my limits for doing anything strenuous, but I'm 72 now, so it's easier for me than someone younger who has to go out to work or has a young family. I hope you can get some satisfying advice/answers and treatment very soon.

[4pjx__]

I probably would have done the same thing...denial and everything. I donated blood 25 or so years ago. They sent me a letter saying they rejected my blood...something about billirubin I think. I was never one to go to doctors unless I was really sick so I basically just forgot about it. I wasn't tired or itchy and I thought I was pretty healthy...well the joke was on me because 2 years ago I was diagnosed with PBC stage 3. Now that I think about it, I have had a few little warning sigs along the way.So, sometimes people can go on quite a long time without symptoms or anything. Which it sounds like you did...but guess what? The party's over! 😉 If you haven't been going to the doctor regularly you are going to feel like you're there every 15 minutes. It turns out that being proactive avout your health is almost a 24/7 job. Mostly I am doing okay. I take my medicine, eat really well and try to get excersize every day. That said, I don't really have the itch but I do have tired stretches. The good news is that you can get better. My LFT's have improved quite a bit and there are many ways I do actually feel better..but I am tired today and I can't really think of what they are. If you don't feel like your doctor is qualified consider asking to see a hepatolagist. My GI sent me to the hepatolagist as soon as I was diagnosed.

Your health is in your hands now and because this is a rare disease, you need to fight for yourself.

-Pam-

[Gaspereaux in reply to 4pjx__]

Pam, thanks for mentioning the donating blood….I have donated blood a few times while in Florida. So maybe that means i can trace it back to when i DIDN’T have PBC. I had routine blood tests in August of 23 and by Nov 2nd I had everything done, was diagnosed on my first visit to the endocrinologist, and prescribed URSO as well as the AMA test to confirm his prognosis. He immediately referred me to the hepatologist (same office building) who arranged his time to see me before we left on vacation. My follow-ups are all booked for May when I return. I am optimistic that the URSO is working. Other than joint pain, and fatigue (which, I believe, has become less frequent) I have no real symptoms. My doctors are both young and “au courant”. Find one who is comfortable with the disease, or who is willing to let you share the information you have about it.

[livernonions1]

Get a new gastro Dr.