Just introducing myself. I have Ménière’s disease, bad balance, fell, fractured two vertebrae, diagnosed with osteoporosis. Then diagnosed with breast cancer, following surgery and radiotherapy my blood tests showed PBC. For years every time I had a blood test the raised enzymes where queried but never followed up. Now at the age of 76 ( a very young 76) I now know why I’m always so tired and my eyes are so sore. Just wish this had been picked up years ago. Am worried about liver failure.
I’ve been on Urso for a month now and am waiting for a fibroscan. Trying to stay positive, not always easy. Thanks for reading.
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7443jec
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Try not to worry... They will discover where you are with it... Sounds like some of your issues may be down to pbc anyway... Just remember that you are the same person as before the diagnosis... And will just be a bit better informed...
You done really well to get to this point without an worse issues...
You are on urso which is the main thing...
Take it easy... If you want more help on diet etc... Try the pbc foundation.. Very good..
I was diagnosed at 36...transplant 2 years ago at 54...so you are doing well... Despite all your other problems...
Are you on treatment for osteo as pbc causes us not to absorb vit a,, e, d, k properly... Hence bone issues etc
Yours must have been bad to have to have a transplant. I thought this was the PBC Foundation 🥴🥴. I was on Risedronate for the osteoporosis but I had an infusion last week which is a yearly treatment. I’m having a fibroscan but not until Oct, apparently they are short staff that do this. I’m also waiting for an appointment for an endoscopy. Xxx
The PBC foundation host this page, if you also want to join the foundation I’ve put the link for you. It is the place to go for all the upto date information and you can contact them wherever you are in the world.
7443jec do you still have residronate as well as the infusion? How do you find it, having more than one specialist? Are they linked up in their thinking of you, or do you feel as though separate bits of you are being managed by people who don't communicate with each other? I ask because sometimes we can be given advice for one concern that conflicts with advice for a different concern and it can be tricky putting yourself back together when this happens.
No I stopped the Risedronate, the infusion was fine. I’m also under a breast cancer consultant so it’s all very difficult. They are all at the same hospital, so my notes are all on the computer. Xx
Hi! I was diagnosed late as well. 2 years ago at age 62. I was already at stage 3 by then. My lft's came down at least ro a reasonable level now so I have my fingers crossed that it doesn't get much worse. Sorry you have to be here but Welcome. I love to hear other peoples stories so keep us posted on your progress.
I think I’ve had it for years, every time I’ve had a blood test the enzyme levels have been questioned but never followed up until now. I’m so cross that it’s now been left so long. I’m waiting for the fibroscan which they can’t do until October. Also waiting for an endoscopy. How did they know you are stage 3, and what are the stages please. I don’t really get itchy skin but have dry eyes and fatigue. Bye for now. X
I was siagnoses vy vlos tests and confirmed and staged with biopsy. I don't have much of an itch. The stages of PBC basically follow the stages of fibrosis and cirrhosis.
Thank you. Obviously the fibroscan will indicate the extent of the fibrosis. X
Hi 7443ec - you are correct, this site is hosted by PBC Foundation, under the administration of PBCRobert, who you can see to the left of your post, and whom you can message with any concerns where you are looking for the most up to date and reliable information on PBC at all and any angles. Never, ever hesitate to contact them. It is the smallest team of the most effective, knowledgeable and caring people you will ever meet. They know PBC from the inside out.
You didn't ask for advice in your introduction but I just offer this. Don't waste a single second wishing PBC was identified in you sooner. It likely would have made little if any difference to where you are now. Most of us know now that we had it far longer than we knew. Fill your time with doing. Do what you need to. Do what you love to. Do a lot of these things, rest well, eat well, hydrate well, exercise well, all equally important. Share with us how you manage these things, what works and doesn't work for you and be a part of what makes this a really useful site. best wishes
* right of your post .... you can see Robert under Pinned Posts....never can tell left from right!
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Hello looking for help with a painful liver
Feeling sick all the time
