Experiences with
ALP test120,411 public posts
Just checking in...
How is everyone doing lately with their PBC? For some of us, the temps are cooler - maybe helping with less itching. Do you feel you are still living life as best you can despite any of the symptoms that may occur unexpectedly in your day?
We all have PBC so differently, don't we? I hope you all try
Tuesday's Tip
[i]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.[/i]
[i]According to Dr. Jones (world 's leading expert on PBC) the thinking may soon be that only a 6 month period
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another pharma update
This is in regards to the pharma Ipsen...
They are trialing a drug called Elafibranor. It is being used for treatment in PBC, biliary atresia (in children) , PSC, Alagille Syndrome, and Primary Familial Cholestasis.
With patients taking Urso, often up to 40% do not see improvement. 3-5% of patients
Seladelpar update
About a month or more ago, I wrote about this upcoming drug's potentially to be the next drug for second line treatment. By that I mean that for some reason someone was not responding to or not able to take Urso. 40% of patients are failed by Urso.
Cymabay, the pharma who manufacturers Seladelpar,
Good report
Had my every 6 month check up with the hepatologist today. Labs were all good. My alk phos is 121 - normal range for my lab is 37-153. Kidney function good as well.. always make sure part of your regular lab work is a comprehensive metabolic profile (CMP).
Now just to make myself committed to making
Tuesday's Tip
[u][i]Alkaline phosphatase [/i][/u]
It is an enzyme released as a response to injury to the bile ducts - not the liver itself. As more cells are injured, the more alk phos is released. Alk phos is not in itself harmful. Higher levels in the blood does not mean more tissue damage. Even lowering
Wednesday's Word
[u][i]"upper limits of normal" [/i][/u]
When we have any blood work done, there is always a 'normal' range given with our results.
Hospitals or labs can somethings differ as to what their 'normal' is. Always look at what your results are according to that normal.
According to Dr. Jones, in
Wednesday's Word
[u][i]Urso responder........[/i][/u]
Right now the criteria used is that the patients' alkaline phosphatase result is LESS than 1.67 times the upper limits of normal and the bilirubin results are less than one time the upper limits of normal.
I know this can be very confusing. This is why