Recently diagnosed with PBC

[Ljonesfnp]

Just started taking Urso-itching terrible!

How long before see any effects?

Experience with liver biopsy as scheduled on Monday

Through readings doesn't seem performed much

[Twinkle26]

Hi Ljonesfnp,

As I understand it can take around 12 weeks for urso to be in your system properly, my itching eased up after 6 weeks and I only get slight itching now but use dermacool cream a few times a day.

I had a liver biopsy this year too, I was quite uneasy about it but to be honest it is uncomfortable but over very quickly, the preparation took longer.

Not many specialists do it, but it does depend on your blood results and other factors I suppose.

It does give a difinitive result at to whether you have PBC and for some how far along you can be, it's good in that way.

Have you got in touch with the Pbc foundation they can give you lots of really good information and support.

Best wishes

Carol

[Hidden]

Hello Ljonesfnp.

I started itching intensely early 2010 (and it was 24/7 then) and that is how I got diagnosed with PBC 10 months later. For me I started with one of the common symptons. I started taking urso December 2010 and I had some initial side-effects with them for a few months. I thought the itching was worse for a while on the urso. I also encountered heartburn and a bit of bloating with the tablets and constipation that I'd never had prior to starting urso either.

I persevered with the urso and it was 2 months later from starting it that I had blood check. My bloods showed to be dropping pretty well so I continued taking the urso.

I know in my case the urso also causes itching. I have experimented with the urso over the years to find the best way to take it and I did read in the PBC Foundation newsletter once that you can take it all at once. I took all mine one morning and within a few hours I was itching badly. I have found over the years the itch had dropped in intensity and I tend to break out with the itch around 11p.m. every day. By 6a.m. it seems to have vanished.

I never had a biopsy. I was diagnosed due to 3 factors, the first finding I had raised LFTs (the liver function test) and also a raised GGT (blood test) plus I started with 2 symptons, itching and in 2010 I had fatigue (though at some point during 2011 it vanished, I just get tired certain days now due to broken sleep at night through itching) and then it was found I had a high titre (measure) of the antibodies AMAs to give diagnosis. I am in the UK and a biopsy only seems to be performed now if there is a doubt as to a diagnosis.

A biopsy is said to give some staging of PBC but I am not interested at all and being diagnosed now I have no desire to agree to one in the future if it is requested.

[slck]

When I see posts for newly diagnosed people, I routinely reply citing the experience of my son, who although not having PBC, does have PSC (Primary Sclerosing Colangitis), a very similar liver condition that is also thought to be of an auto immune nature. He has been successful in using diet, vitamins/supplements and most importantly Low Dose Naltrexone (LDN) to return to a normal condition. All his liver function values have returned to normal for about 1.5 years now, and all his inflammation markers are normal as well, and he is symptom free. Go the the LDN Foundation web site; read their materials and links to Dudley Delaney's web site and blog; and Google Dr. Burton Berkson and watch videos about him, particularly his 2009 presentation at a National Institute of Health conference, and also read his books on LDN, Alpha Lipoic Acid and B-Vitamins, (related diet strategies) and you will find his regimen of vitamin/supplements that improve your immune system, and the method of action of these items to help your body's immune system return to normal. Gluten and dairy free diet can help to reduce leaky gut and related intestinal irregularities that are typically at the root cause of many auto immune conditions. Some people also believe that a non-GMO diet will also help. Join the Yahoo LDN User Group and you will receive emails from LDN users and questions from inquirers about the application of this inexpensive and low risk/side effect drug in addressing a range of auto immune conditions and returning your body's immune system to normal or more normal condition. Many doctors do not know about LDN, or, since it is used "off label" for auto immune conditions, will not prescribe it, so do not be surprised if you get a negative reaction from your doctors. Find one who is LDN knowledgeable, or search the above resources about its availability not through your current doctor.

It takes a lot of time and effort to do the research and investigation, but with main stream medicine offering very little help to halt the progression of many these auto immune diseases, I believe the above items offer a reasonable and low risk strategy to address auto immune conditions. You can contact me if you have any questions, and I will try to point you in the direction of resources that will help to answer them.

Warren

[Ktltel in reply to slck]

Thank you Warren. I'm so scared to try anything homeopathic as I'm scared it will worsen or weaken the meds I'm on. Also, since I have PBC auto immune disease, (where my own immune system is attacking my Liver,) won't building up my immune system be like making that "monster" even stronger? I plan on seeing a naturopath to help me with this gastritis that I still have. Friends pushing me to go see him. But, I really don't know what he knows about PBC.... I have lots of questions. Thanks for your research and references too.

[slck in reply to Ktltel]

Your interpretation of LDN resulting in "upregulating" your immune system is not exactly correct; it re-regulates it to a more normal condition. Dr. Leonard Weinstock has a web site about his gastro practice, gidoctor.net , however, if you go to that site and hit the Research Publications tab on the right side of the home page, and then go to the Low Dose Naltrexone item on the resulting list and read the Low Dose Naltrexone Fact Sheet, it provides a good explaination of the Mechanism of Action of this drug, and what it does and how it does it. This may help you to better understand it, and therefore be more receptive to trying it.

There is a wealth of additonal information on that site about LDN research, some of it very technical, but it should convince you that it is being used for a very wide range of auto-immune condtions, including PBC, with good results.

[Ktltel in reply to slck]

Thank you. I will check in to it!

[Ktltel in reply to slck]

Hello again slck,

My husband and I spent all afternoon researching Neltrexone. looked at the info. you provided and even contacted a Dr. In Lee Summit, MO. who treats some of his patients with low dose Neltrexone. (Not PBC patients though?) We only spoke to his nurse. She wanted to schedule me a consult with the doc. I opted to wait until I saw the Liver specialist at KU Med. I haven't been told what stage I'm in. Haven't gotten there yet. But Neltrexone sounds interesting and promising. I will absolutely continue to look into this. Also looking into building up my immune system without conflicting with my URSO meds. Thank you. How is your son?

[slck in reply to Ktltel]

He is fine, living a normal life, thank you.

Wishing you well, and hope you find a strategy and a remedy that works.

[Becca75]

Hi - I was diagnosed in April after a liver biopsy. I was so nervous before the biopsy because I had no idea what to expect. After I was kicking myself for psyching myself out like that. It really was nothing. You'll do fine with the biopsy.

I'm responding really well to URSO and don't feel as much of the itching now so that's good - but it took awhile before I felt some relief. My numbers have come down a lot and i'm almost in the normal range - I"m so close!

I hope you have a great reaction to URSO

\Rebecca

[annscot]

My itching never stopped after taking urso....so consultant prescribed questran......didn't agree with me.......have been on Nalorex and phenegren for few years...itching controlled but still itch at times especially at nights when I'm tired and need a sleep..inside ears and soles of my feet...I try to distract from itching but not easy...hopefully you will find a cure soon to ease it.....I'm 72 now and so happy to be around to spend time with my family especially my gorgeous grandchildren.

[Ljonesfnp in reply to annscot]

Thanks for asking; had liver biopsy which was not bad but still with jabs of pain in liver: was done Monday

Got results of biopsy today; reviewed with my friend who is hepatologist; is early stages PBC

I'm taking Urso 3x day advised I take 4x day

[Ktltel]

Ljonesfnp.... How's it going? How you feeling? Are you up to sharing how you're doing? Thinking about you. Did you have your biopsy?

[littysgirl]

I was diagnosed in Feb 2016. I swear I wrote down my initial reactions and how long they lasted, and I can't find where I wrote it down. The first couple of days, I had a bad headache (which was relieved by Motrin), some flushing and sweating, like a hot flash and crazy itching on my ankles and feet. Those first couple of days, I decided that if this continued, I was not going to continue with the medicine because this was not the quality of life that I was willing to live with. However, the headache and sweating disappeared within about 3 days. I think the itching lasted about two weeks (not constant, usually at night) I still get the itching every now and then but not often. I wish I knew what might set it off but I don't. I had my first blood work on the Ursodiol at 3 months and was discouraged that my liver function tests had actually gone up a little. My doctor was fine with that and said that frequently it took longer than three months to work. At 6 months, the numbers were down to just slightly above the normal range and I'm having no problem with the medicine.

I had a liver biopsy last December. My various blood tests results were inconclusive and the biopsy were supposed to give us a definitive diagnosis. Unfortunately, that still didn't happen. My doctor sent the slides for both a second and then a third opinion. The general consensus was that it was PBC but the final opinion was going to be based on if I improved on the Urso. The other possibility was autoimmune hepatitis, which has a completely different treatment.

I was very nervous about the liver biopsy and it was just fine. I only had to not eat after midnight the night before. It was a long day because something had happened at the hospital and they were running several hours late. I was starving! But the actual procedure was ... nothing. I was awake but very sedated. A doctor I had never seen before and would never recognize, breezed in with a mask on. Said you're going to feel some pressure. Mostly I heard it, kind of a popping noise and felt some pressure where the pop was. No pain. Then he did a second one and left the room. Everyone started cleaning up and I remember asking - was that it? It's done?? I had read that it might be a long needle that got threaded between my ribs. None of that. The biopsy spot - for me anyway - was right at the base of my sternum. I still have a red dot there. I had to stay under observation for another hour or so and then I could go home. They brought me juice and crackers right after the procedure. I was not allowed to drive myself home. I had my daughter with me to bring me home. I feel like I had some restrictions for a couple of days, maybe no heavy lifting but really, nothing in particular that I remember. No side effects. I might have been aware that I got poked there but really no pain or queasiness or anything to worry about.

[Ljonesfnp]

Had liver biopsy fairly conclusive for PBC but sending out for second opinion

My gi dr ? Also autoimmune hepatitis

I Need a liver specialist!!! Anyone aware of someone who specializes in PBC?? NYC? Boston??