emails worth noting from the PBCers Digest

[Guest guest]

#1 - Advice for anyone who is concerned about the manufacturer of their

medication and whether it is has an FDA-approved equivalence evaluation.

The US Food and Drug Administration ( " FDA " ) provides drug information, including

equivalence evaluations, on its " Orange Book " website. You can search for a

specific drug at this page:

http://www.accessda ta.fda.gov/ scripts/cder/ ob/docs/queryai. cfm

for Approved Drug Products with Therapeutic Equivalence Evaluations Active

Ingredient Search Results

 

#2 - Information from the PBC 2010 conference dietitian

 

" -s, Registered Dietitian at the University of Texas

Transplant Center in San , spoke on August 10th. sent me some

information and asked me to share it with everyone:

" We had a wonderful speaker today talking about hepatic encephalopathy (HE). It

was with Dr. Guy Neff from Cincinnati, Ohio.

During his presentation he made some interesting points:

- He focused on the issue of muscle wasting and stressed not to limit protein

intake. In my talk I discussed not limiting the amount of protein but rather the

type of protein (i.e. fat). He said his center does not limit protein intake.

The diet I provided is a good guideline but I would recommend aiming for the 80

grams rather than the 40 grams if it's tolerated.

- To aid in reducing encephalopathy he reminds us that muscles also metabolize

ammonia. That physical exercise will reduce ammonia and reduce fatigue and

provide a better candidate for transplant. I stated that muscle and strength

development was critical with PBC. It is worth fighting through the fatigue if

the person is able. And anything is better than nothing.

- He also said that studies show a HE patient is more at risk for lower

metabolism and muscle wasting via the starvation-cycle. Normal livers activate

the starvation cycle (where the body turns to muscle for energy) at about 72

hours but HE patients will turn at 18-24 hours. This makes eating small frequent

meals important so that the body doesn't try to use the muscles. He says he

recommends a can of Ensure or other protein rich nutritional supplement before

bed every night so not to trigger the starve state during the evening. This is

new information for me but it makes absolute sense and works the same for

diabetics. So I think a protein type snack or supplement would be ideal before

bed.

- And lastly he was talking about future research studies looking into adding a

topical testosterone for HE patients to improve the uptake of protein. Men

metabolize protein better because they have a higher level of testosterone.

Supplementing the testosterone might allow the body to absorb and utilize

protein better. Again this is future research and NOT to be done now. I just

wanted yall to keep an eye out for the studies. "

KayK_TX, AIH/PBC