unanswered questions

[DonnaBoll]

I'm excited to be leaving for The International PBC Summit in Edinburgh the end of next week. I'll be bringing back as much information to you as I can about research being done for the cause of PBC, itching and fatigue. All of these issues have impacted all of our lives to some degree. Many of us have several issues going on in our personal PBC journey. We can never lose hope that researchers are working diligently, along with pharmaceutical companies, to improve our quality of life as well as so many others. Last year when I was there I learned that it takes about a billion dollars - and many years - to pursue a drug in a clinical trial - and then no guarantee that it will be successful. There are so many questions unanswered. A situation arises and we never feel quite sure if it's 'normal' or not. For me, this is one of the most frustrating parts (there are many) of having PBC - unanswered questions about what's 'ok'.

What seems to be an 'unanswered' question for you? What is one of the most frustrating parts of having PBC for you personally?

[Gaspereaux]

Hmmmm….i guess my unanswered question is…..since I didn’t start out with itching, and, after four months on URSO, still no itching…is it safe to say I probably will not get it? I still don’t even know if I am a responder yet, but I believe I am…..fingers crossed!

[DonnaBoll Administrator in reply to Gaspereaux]

I know everyone who doesn't have the dreaded itch just 'waits' for it. Believe it or not, some do not ever have the itching at all. There is no way to tell if - or when - someone will get it. The degree of itching can really vary as well... sorry there aren't more definitive answers to questions. Guess why that's why they are called unanswered questions. As far as being an Urso responder or not, it can take up to a year for some to find out. What was your beginning alk phos number? If your numbers fairly consistently come down, then you are considered an Urso responder. You and your doctor can review these results when you see them. Do you have a way to see your results thru a 'patient portal' online? We all have fluctuations up and down while we take it. Look at the overall trend of your results - not just one result. According to the Standard of Care for PBC, labs should be drawn every 3-6 months. Let me know about your alk phos results so far.

[Gaspereaux in reply to DonnaBoll]

Good evening, Donna! I just finished paying my registration for the conference in Miami. So….My ALP was 385 in October…and I started URSO November 2nd. So it is only four months. I have blood tests as soon as I get home from Florida in May…and yes, i have access to all my records/results online. I didn’t realize it would take up to a year….

Also….I was wondering about URSO . I realize that the dosage is 13-15 mg/Kg. So if you are about 61 Kg, how much would be correct, when tablets are 500 mg and can only be halved…. I am on 750 mg per day. Would that be OK?

[DonnaBoll Administrator in reply to Gaspereaux]

13mgs/kg would be 793mgs/day

15mgs/day would be 915 mgs/day.

Think you aren't taking quite enough. Think about making taking another 1/2 of a 500mg tablet = 1000 mgs/day. (750+250) check with your doctor but you need at the least 800mgs=day I just don't want you on too low of a dose. It's really important to be on the right dose. Can you get any other pill besides the 500mgs?

[Gaspereaux in reply to DonnaBoll]

I don’t know but I will check. I imagine we will have a discussion after the blood tests in May….i will definitely mention it !

[DonnaBoll Administrator in reply to Gaspereaux]

good idea... I'm just concerned that you aren't on quite enough Urso. We want it give it every chance to work for you. I hope your lab results show improvement though. Any number less than from where you started is a 'win'.

[Gaspereaux in reply to DonnaBoll]

Your mind is on overdrive the first day you meet with the specialist (s). I do believe it was said they went in increments of 250 mg….if that is so I am closer to the 750 than 1000mg/day

[DonnaBoll Administrator in reply to Gaspereaux]

Please look at the Urso calculator carefully to make sure of the range of doses you should be taking - using 13-15mgs/kg range. This is really important. I think it would be better to be a little 'over' the dose than less. Sure you will get this straightened out when you see the doctor. Let me know.

[Gaspereaux]

Donna do you know if I could still respond to my dosage of 750 mg even if it should be slightly more.

[DonnaBoll Administrator in reply to Gaspereaux]

I have no way to know that. You just have to wait and see what your results are. BUT being on the right dose is so crucial! I hope he is responsive to making your dosage higher - even a small amount over time can make a difference. Urso keeps your bile ducts open so the bile can flow to the liver. When the ducts become inflammed or damaged, they release the enzyme Alk Phos. This is what is measured by your blood work. Right Urso dose is one of the most important first steps to keep the PBC under control.