Liver biopsy negative but specialist says I have PBC

[Rottiemommy]

Well after fighting with my Gastro she sent me to a liver specialist. He looked at my chart and said the biopsy was wrong I am diagnosising you with PBC. He is putting me back on Urso and gave me that aweful powder for the itching (still trying to figure out how to take it). He did say it is really early so that is good for the future.

I’m frustrated that this is th beginning of another life long problem that I have to manage. I was diagnosed with seizure disorder when I was 18 so everything I do or drugs I take have to “work” with those meds and now I have to worry about more meds. I know it is manageable but I feel like all I do it take pills. I don’t know what it feels like to be drug free anymore. I’m just really tired of being “sick”.

[PBCRobert Partner]

Rottiemommy, please contact me directly.

It is possible that the dr is correct but more information is needed to know where to go next and what questions you can ask...

Yours,

Robert.

[butterflyEi]

Hi Rottiemommy

Sorry to read that this is another hurdle for you to cope with and I fully understand the difficulty of juggling medication and would like you much like not to have a tablet regimen. As to taking that awful powder I am guessing it is cholestyramine. I take the light version. Having spoken to Robert many years ago on how best to take it I was advised to have one sachet before breakfast and one sachet after. I take it in juice which I then dilute with water which I find helps me get it down. Sometimes when my tummy is not feeling so great I mash the Questran Light into a banana then add yoghurt and a bit of milk and then some oats for fibre, I don't know if this is right or wrong but it works for me. Please have a look at your patient information leaflet (PIL) which will give you information about the time sensitive nature of cholestyramine relative to other medication.

I see Robert has answered you and I am sure he will be a much better source of information. Hope all works out for you.

[Hidden]

yes its a bummer... how ever urso i found was a tablet that easy to take and doesn't appear to be too bad for interactions with other meds.

if you are already taking meds for another condition try and take it at the same time if that is okay with the meds and at least it will be less of an impact on your day.

best wishes cazer.

[PBCRobert Partner in reply to Hidden]

Do NOT take questran with any other meds.

The questran will soak them up and they will not do what is required.

[Prettyeyes79]

Hi Rottiemommy,

My powder is orange flavor so I mixed it with orange juice or sunny d juice. You can’t taste the powder if the flavor is orange. Sorry to hear

[Rottiemommy in reply to Prettyeyes79]

I want to say THANKYOU! I am taking it now without gagging (when I remember). The OJ is amazing!

[Prettyeyes79]

That you have to take a lot of medications. I feel like that also, I take about 6 including powder and I tell myself this you taking the meds to get better for myself

[PBC2002]

I understand. I take about 6 pills every morning for a couple of issues. But, if the Urso makes the PBC slow down, then I’m all for it. I don’t think of myself as being sick at all. PBC has little to impact on my life, except for taking a pill in the morn and one in the evening.

Good luck

[ninjagirlwebb in reply to PBC2002]

I hate taking all these meds, but my doctor told me to think of it as taking vitamins. Still...I didn’t anticipate taking all these meds until I was much older. Such is life...