Tests are better, but, not quite: After... - PBC Foundation

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Tests are better, but, not quite

iagra profile image
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After taking Urso for 3.5 months, my GGT level dropped from 130 to a normal level of 43. However, Alkaline Phos remained high, though not as high as before I started taking Urso. It was at about 300, now it is 189.

If you responded to Urso, how long did it take for your bloodwork, specifically Alkaline Phos test, to go back to normal level?

Did AMA (the autoimmune system marker) ever go back to normal with taking Urso?

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iagra
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Skypony profile image
Skypony

Hi iagra, it can take 6 months or a year to get full benefit of response to Urso, so hopefully your numbers will drop further. AMA isn't usually expected to fall, tho some people have reported that it does. As there doesn't seem to be a direct connection between level of disease and AMA titre, that's less of a concern. Best wishes.

iagra profile image
iagra in reply to Skypony

Thank you so much for this information, Skypony! Best wishes to you too!

Hello iagra.

If your blood checks are showing more positive results than pre-urso then that is fantastic.

I had above normal bloods in the early days (think my ALP was sim to yours in 2010 pre-urso and diagnosis of PBC (December 2010)).

The one thing that has to be remembered though, we are not expected to have what are considered normal LFTs (liver function test) and the GGT after being diagnosed with PBC if we are diagnosed when they are not of normal range. It is possible in a lot of patients for them to return to normal over time. Mine have not returned to normal in the 6 years now I've been taking the urso BUT they did come down over time and seem to be stuck now roughly round one level. But they are said to be 'OK for PBC'.

I only ever had the one blood check for antibodies in 2010 and it was the high titre of AMAs that was found which then gave the diagnosis (I started itching early 2010). I have never had another recheck of the AMAs and I personally don't think having them checked is going to be of any significence.

I do however think that perhaps (and this is my theory) that for some who do have the LFTs go back to normal after diagnosis maybe the AMAs have halted but with PBC there is then no way of knowing if they'll ever strike up again as it is said that we all tend to be different when it comes to bloods, itching, etc in PBC.

Looking at your GGT level and ALP I'd say that you look pretty good. I'd not worry and just keep getting on with living your life and I sincerely hope that you continue to receive positive blood work with PBC.

iagra profile image
iagra in reply to

Thank you so much, peridot! What you said is very encouraging! Really appreciate your input. I wish you all the best as well!

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