Just checking in...: How is everyone doing... - PBC Foundation

PBC Foundation

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Just checking in...

DonnaBoll profile image
DonnaBollAdministrator
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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 to track your numbers to see the overall trend of your alk phos and bilirubin especially.

I know so many lately have mentioned that their numbers aren't in the 'normal' range yet. For many of us, our normal is not -and may never be - in that normal range according to the laboratory standards that they use. It is important to look at where your numbers started with the alk phos. For someone who may have started with results in 5-6-700 or more, then after taking Urso for awhile, they may have numbers in the 300's. What an improvement for them! It's not really beneficial to compare numbers. I had a friend the other day who, after taking Urso, her alk phos was 160. She was happy with this as it's been pretty consistent and far less than when she started on the treatment of Urso.

It's important to looks at the overall trend of your alk phos results. Remember when we have a result of alk phos given by the lab, it is what your alk phos was at exactly the time the blood was drawn. This is why it is so important to look at the overall trend of our numbers. So many worry about what their results will be - only to be upset if they are higher than last time... We all have fluctuations. This is normal for all of us. Again - look at the overall trend of those numbers.

Sometimes we need to just step back and take a look at the trend.... keep it all in perspective. Hard to do, I know, but it can keep us from needless worry when our numbers have improved overall with taking Urso.

Do you keep track of your numbers at all? How do you do that?

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DonnaBoll
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iagra profile image
iagra

Spot on, Donna! Thanks!

DonnaBoll profile image
DonnaBollAdministrator in reply toiagra

I think sometimes we all need to be reassured that we are 'ok' even if we don't get to the magic 'normal' range. I hope you are doing well.....

Ls400ii profile image
Ls400ii

Hi Donna…great explanation. In 2020 my alk phos was 65. Then I had gallbladder surgery and it went up to 127. It has fluctuated in the high normal range since then. My recent bloodwork showed my alk phos was 64. Took 4 years to get it down again. So it seems that any kind of medical issue can cause your alk phos to rise. When I was sick with flu like symptoms, it elevated my alk phos as well. I don’t know why that happens.

Donna..I hope your doing well..we all miss you very much ❤️

DonnaBoll profile image
DonnaBollAdministrator in reply toLs400ii

Your alk phos fluctuating is something so many experience. Any illness, infection, and especially stress can cause the alk phos to rise. If we know this, sometimes it can keep all that anxiety from going thru the roof for us. Sounds like your numbers are good.

I think of all of you so often..... feel chat to reach out to me in a private chat so I know who you are if you would like.

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