For those who have gone through a transplant, did your doctor keep you on Ursodial? I was under the impression it was used to lower some of my “bad” numbers, however 3 months after surgery all my numbers are back to normal
I did not continue Urosodiol after my transplant. Did your surgeon do the Roux-en-Y procedure when hooking up your new bile ducts or did he hook back up to your common bile duct? If the latter, he may want to be sure that the bile is flowing properly through just as extra care.
My doc has kept me on Urso. I do not know the degree to which it helps, but I am not at the point of discontinuing it, or even contemplating it.
Still on ursodiol 4 years after transplant. I had live donor and have a bile duct that’s not great so that’s the reason I’m still on it.
I was on urso for about 6 months after my transplant because my “new” bile duct was sluggish and they kept me on it to help the bile flow nicely through it. I’ve been off it now for a year and my numbers are all normal. It’s a blessing to see every time I get blood work done. I do have to mention that being on urso for 12 years prior to transplant really did a number on my bones. Suffered many spinal fractures during my transplant due to the number of hours on the operating table. Not fun but managing after 1.5 years. Just watch for bone loss and get a bone density scan done regularly. Wish you all the best!
Thanks everyone for your responses! I know I’m only at 3 months since my transplant, but really happy with the results. My liver function panels have me at normal for every test, and I’m actually going back to work this week amazingly enough.
I’m still tire a bit when super active, but then when I was on deaths door in January I was actually having to nap a couple times a day. No need for that since the transplant!
Itching is gone (thank god) and skin is back to my normal (human) color, not the burnt orange I had up until the operation. Eyes are white again too!
Good to know that Ursodiol can cause bone density issues. I’m still at a good place bone-wise now, but with the future I now have it’s something to ponder. When I was first given the drug I was told it strictly reduces the numbers that were inflated when one is battling PSC, and that it was not something that cured.
Sounds like you are off to a good start, I am 15 years post transplant and doing great. For a couple of years prior to transpantt, I was taking 1800 mg of Ursodial. The last 15 years i have been taking 600mg. I get a bone density test every few years and those have been normal. Best wishes to you as you return to work.
Five months post for me and yes i am still on Urso. Ironically, I didn’t take it prior to transplant.