Monday, March 5, 2012

Some statistics and information I gathered

I guess I just can't get too much information...Not so sure that's a good thing.

Here are some random tidbits about PBC:

The prevalence of PBC in families with one affected member is estimated to be 1000 times greater than that in the general population. The disease primarily affects women.  {So think I'm worried about my daughter? Hell yea...}

The average age of patients undergoing liver transplantation for PBC is in the range of 53 to 55 years (mean age of diagnosis is 39).

{The part about "debilitating bone fractures" sounds fun?!}
In addition to considering the MELD score and Mayo model, we suggest that patients with PBC be referred for transplantation evaluation if one or more of the following is present:
•The plasma bilirubin concentration is greater than 5 mg/dL and is increasing
•The serum albumin concentration is below 2.8 g/dL (28 g/L) and is decreasing
•Signs of decompensation or portal hypertension develop, such as ascites, variceal bleeding, coagulopathy malnutrition, or encephalopathy
•The patient has intractable pruritus
•The patient has recurrent, debilitating, nontraumatic bone fractures

{Oh goody, liver transplant doesn't even fix it anyway!}
Recurrence of PBC in the transplanted liver — It is now generally accepted that PBC can recur following liver transplantation.
In a report of 421 patients from Pittsburgh, PA, recurrent PBC was observed in 8 percent of patients after five years, and 22 percent after 10 years [11]. Higher rates were described in a series of 400 patients from Birmingham, England, where recurrence was observed in 18 percent at five years and 30 percent at 10 years [9]. A later report from the same group involving 485 patients found a recurrence rate of 23 percent during a median follow-up of 79 months.

Primary biliary cirrhosis remains one of the top five indications for liver transplantation in the USA. Survival rates of patients and grafts after liver transplantation are reported to approach 92% and 85% at 1-year and 5-year intervals, respectively.137 Fatigue and pruritus usually resolve, with metabolic bone disease improving after transient worsening in the first 6–12 months after liver

{Thankfully I'm asymptomatic right now, so I guess I have 16 years?! Nice to know when my timer will ding...}
Generally, the median survival duration from the time of diagnosis is 7.5 years for patients who are symptomatic and 16 years for patients who are asymptomatic.

{I like how it says 'delays' ugh}
Reports suggest that UDCA delays the need for transplantation or delays death.

{FINALLY, something that actually sounds positive! Lets hope I'm responsive to the UDCA treatment!!!}
Patients who achieve biochemical response to UDCA after 1 year of treatment reportedly have a similar survival rate to the matched control population, and this observation might be used to identify the population of nonresponders who will require alternative or additional treatments

{Or not...}
Liver transplantation appears to be the only life-saving procedure.
15-20 mg/kg of UDCA (ursodiol) provided best out come.

{My sources, along with a trial UpToDate membership...}

So honestly, I'm being a little sarcastic with my comments.  I mean, all the data does sound super bleak, BUT I've also been doing a lot of research on autoimmune diseases as a whole for a while now because I was trying to control my lichen sclerosis...SO, I've found that there is A LOT of evidence pointing toward grains (specifically the protein in grains known as gluten) causing 'leaky gut' which is then associated with causing all the auto immune diseases.  I will post PLENTY of references on that as time goes on.  But for now, I just wanted to say I'm not feeling nearly as negative as my comments sound.  I actually have very good hopes for my grain free diet and increased vitamins to help me cure or at the very least, slow down progression.  That along with my UDCA treatment will hopefully give me a normal life...

Looking forward to my appointment tomorrow!  Need to find out where I stand and get started on the treatment!  I have a kid that needs me to stick around a good long while! :)

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