Pbc/Aih: Been to see my consultant and we... - PBC Foundation

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Pbc/Aih

janine541 profile image
13 Replies

Been to see my consultant and we wants to put me on steriods. Before i have to have a fibro scan and bone test.

Any body had this

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janine541 profile image
janine541
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13 Replies

I am down to 12.5 mgs of prednisone. The steroid is a blessing and a curse. I started the steroid in march at 40 mgs. I also take AZA at 50 mgs and Uris at 1000 mgs a day.

I went to my opthamolgist yesterday. He had to remind me how terrible my diseases are. My eye vision changed drastically but he wanted me to get down to 5 mgs of prednisone before making a change. He said that I have no damage to steroids with my vision and made me an apt for two more months as a follow up. Next is my bone density test.

Prednisone and AZA is a blessing and or a curse.

My dr is hoping to blow out my aih. That will still leave me with pbc. He said that it showed up so minimal in my liver biopsy that he doesn't see it being a issue for me. I know this doesn't answer your question but I wanted to respond anyway. Oh and I did chip a tooth but the dentist said that it was a 10 year old filling.

janine541 profile image
janine541 in reply to

Oh dear hope your settled and soon wi5h the steroid

kristieerhodes profile image
kristieerhodes

Back in 2008 or 2009, my doc put me on prednisone and azithiaprine to see if it lowered my liver numbers; it did not so he took me off of them. He thought I had PBC with overlapping AIH.

Sachin1234 profile image
Sachin1234 in reply to kristieerhodes

They didn't do biopsy before they put you in medicine 😔

janine541 profile image
janine541 in reply to kristieerhodes

Oh dear and have they im proved now. Have you not got pbc over lap

kristieerhodes profile image
kristieerhodes

I already had 2 biopsies by that time and my doc said there was something else there but they couldn't identify it for sure. He said that if the treatment worked, they could most certainly confirm the AIH; it didn't work so they decided I didn't have it but are still convinced I have an overlap of something.

kristieerhodes profile image
kristieerhodes

My numbers have improved over the years just not like what they want them to be they range anywhere in the 300s to 500s average every now and then they will spike up. I'm not a responder to Urso but it does keep them down to the three and 400s for the majority of the time I do take the new medication Ocaliva with the Urso and I go back in two weeks to find out what my numbers are in January after taking it for a month they were not that great as well as in May. But I was also having to take it every other day instead of every day because of the severe itching it increased my normal itching 10 times I couldn't sleep I had scratches all over my body so I would bleed a lot because I don't clot and I couldn't sleep. it was awful the bruising was awful it look like I was being beat just from me scratching even when I did sleep

gwillistexas profile image
gwillistexas

I'm having fibroscan on 14th. Are you also referring to bone density test? From what I know, PBC can cause osteoporosis

i am due fibroscan on 12th and had a bone scan last yr its nothing less invasive just fill out family history and its literally like a hand xray they only did my wrist and i believe fibre scan is just a normal scan with the jel

janine541 profile image
janine541

Aww thank you

58goose profile image
58goose

I've had both done, nothing to them! Both only take a few minutes and no discomfort etc. I had a bone scan several years ago for a different reason and the more recent one showed signs of change so the consultant put me on calcium tablets as well as Urso. With PBC there can be a tendency not to absorb calcium properly which can lead to osteoporosis.

littysgirl profile image
littysgirl in reply to 58goose

I'm just cruising through the postings while I eat dinner and your post reminded me I never took my calcium today. Thank you!

58goose profile image
58goose in reply to littysgirl

You're welcome - it's the tablet I'm always forgetting! I have to wait 4 hrs after taking my levothyroxine before I can take my first calcium so that varies depending what time I've got up and I take the second one while I'm preparing dinner (or if hubbie is getting dinner ready I forget and then have to remember before I go to bed!).

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