For the most part physicians have given Urso up to a year to decide if you are a responder or not -- has the Urso decreased your numbers significantly in that time period.
According to Dr. Jones (world 's leading expert on PBC) the thinking may soon be that only a 6 month period of time will be given to make this decision. He feels if the Urso isn't working after 6 months, then the likelihood it will are slim and second line treatment should be initiated - rather than waiting another 6 months. It may very well be in the patients' best interest not to wait another 6 months.
We all have a responsibility to monitor our own lab work results. This can be done on your computer, thru MyChart, or if you belong to The PBC Foundation there is a place to do this on their app on your phone. All of us need to be aware of what the overall TREND is to our numbers. Each number just tells us exactly what our alk phos level at that exact time that the blood was drawn. The trend gives us the information about how the Urso is working overall. Dr. Jones does not feel that the dosage of Urso will change though. It remains 13-15mgs/kg of body weight.
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DonnaBoll
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From my experience ALP fluctuates a lot. Often there is no trend, just jumping around (I test every 6 months, sometimes more frequent). After I started taking URSO, ALP has gone down substantially (I started with 375), still, it can be 135 one time, 180 another, and sometimes goes as low as 120. This is how low it was last time. But I'm not holding my breath, because it can go up to 180 or higher, next time.
Despite the fluctuation in your numbers, it looks like overall the Urso has brought down your numbers though. I heard an expert say one time that he is happy with any alk phos number below 200. There is nothing simple about PBC..... sounds like you are doing well overall though. Do you experience the fatigue or the itching?
I hear a lot of people mention fatigue. But I am not sure what it means. We all get tired from time to time. How does fatigue related to PBS feel and manifest itself? How do I know it is PBC-fatigue and not just regular fatigue? The same about itching. Where, when, every day, sometimes, how strong? I have a persistent itch under my left shoulder blade, but, it is called something else, forgot the name, I'll look it up. ... OK, found it: "AI Overview
Itching under the left shoulder blade could be a symptom of a nerve condition called Notalgia paresthetica (NP). NP is a benign, neurological condition that causes intense itching, burning, or tingling between the shoulder blade and spine. It's usually caused by a problem with the nerves processing pain and itch signals, and it often affects a specific area, usually under the left shoulder blade"
I also have some itching around my neck, taking CETIRIZINE HYDROCHLORIDE pill, once a day, and it seems to be working. But the dermatology said it is related to histamine. I started having this itch a couple of months before I was diagnosed with PBC (2016). So, who knows, maybe it is all related to auto-immune system.
If you haven't experienced the 'fatigue' or the dreaded 'itch', then maybe you won't. Not everyone does. When we refer to PBC fatigue someone once described it as trying to walk thru wet cement. I know for me, it's literally an effort to put one foot in front of the other to just walk. I is SO far beyond being tired. It has no rhyme or reason as to why and when it happens. The itch can be consuming your life.. I know some people who suffer with it unbearably. Trying everything we can to find what works is such a trial and error effort. It is almost from the inside and often varies where it 'attacks'. My legs were the worst for me. So many of us can scratch until we bleed.... it is unlike anything most people ever experience. The itch can occur anywhere.. scalp, legs, hands, feet... we never know. I do know from my own experience that it can become life altering. Be thankful you have neither itching nor the fatigue. I appreciate your asking about it though. I know some folks 'wait' for it to happen. Don't - just live your life and be thankful you don't.
Donna, thank you for explaining the symptoms so well. I never fully understood until now. You talk about the itch in the past sense ("my legs were the worst"). Did you find the remedy or it's just went away on its own? When your itch first started? Early, when you just diagnosed and started on URSO, or years later?
I hope your symptoms are not as severe as they once were.
I'm glad you now have some idea of what the itch and fatigue are like for those who have it. I didn't have the itching until about 10 years after my diagnosis. The fatigue, I think, started about the same time. The itch never really was helped by much of anything. Actually, my PBC progressed over the next 5 years until I needed to be listed for a transplant. Very few PBC patients ever need a transplant. You have to remember this was back in the late 80's until early 2000. Treatment and overall knowledge was very limited compared to now. Almost immediately after my transplant, the itch and fatigue was gone - so was the jaundice. I was thrilled ! Now nearly 20 years post transplant, the PBC has come back. In about 25% of transplants recipients, it happens. It isn't the new liver that gets PBC, it's that my body still has PBC and decided to attack the new liver and bile ducts. It is very very early in the disease for me. My numbers are good - occasional fatigue for me but no itch. I am really blessed. Everyone has PBC differently for sure. I know many many people who have it thru my support groups over the years. No two people are the same.
Thanks for telling your story, Donna. Very glad your transplant was successful and you are doing well now, so many years after the surgery. I've been officially diagnosed with PBC 8 years ago, but, remembering my test numbers, have it likely close to 16 years by now (this is when my ALP started hovering over the high limit). On URSO for 8 years. I just hope not to get the itch. I'm 70 now and not as strong as before to fight the big battles.
I'm so glad Urso has worked for you. I, too, have been lucky with taking it for almost 40 years. I took it for 20 years before my transplant and now for almost another 20 post transplant. I know we are so grateful to have drugs that help us maintain bile duct/liver function.
I am very thankful for my donor and his family's decision to donate his liver. I never thought about the Urso causing my 'GI' issues... might be the reason. I'll look into it.
i responded fairly quickly but my ALP numbers weren’t in the normal range until over a year later. Now they are in the mid-range of normal but again, they slowly fell over a long time. It’s been 8 years now, since July of 2016.
Glad they finally got to where you wanted them to be. It can take time for sure. Hard to be patient but we need to, don't we? Do you experience the fatigue or the itching at all?
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