After 3 weeks on Ursodiol my ALP has gone from 600 to 225. I didn't expect to see them come down that fast. I know it needs to come down further but I feel happy to see it's working. Next week Friday I have an appointment with the heptoligist to verify if I have the AIH overlap or not. The GI said not to worry because I can get better weather I have both or not.
-Pam
Wow that's fantastic. Great news.
I was needing some encouragement. Or at least hope!
I know what you mean. I went from over 600 to almost within normal range. It's taken me 5 months but it got there thank goodness. It's a fantastic feeling.
What exactly is the normal range do you think?
Think it depends on the lab. They all appear to use different measurements. Mine is in U/L. I asked for a print out of my last results. So that I could see for myself - but it might have been useful to have seen one of the ones when it was high too. Then I would be able to see the difference.
It's quite frustrating when the doctors don't really explain it properly. When I was first tested to gp said he couldn't understand why I wasn't ill. He thought I should have been unable to get out of bed. But after reading others stories I don't think it's that unusual. I'm itching more now with good blood results than I was when it was high! But would rather be itchy and have a good result lol
Try and reduce the Uric acid in your body it is making your itch worse I have read somewhere
How did you manage to get it down?
I got some of it down by changing lifestyle. I did enjoy a vodka and there was an improvement from stopping that - but the real difference was changing my eating habits and starting urso. I have to admit my eating habits were shocking. Everything I ate was either high in fat, salt or sugar!
I used to drink wine. I missed it for a while but I had a sip of my husband's wine when we were on vacation and it tasted like vinegar! Now when I feel like I might want a glass of wine I remember that it wasn't as good as I thought . This week I have really been focusing on diet and I think I'm doing pretty well. ..I still need a sweet after dinner though and I can't think of a cure for that. I tried a bowl of fruit and it's o.k. but I like sugar and I still crave it until I get it. I think we have sacrificed enough lately we can't give up everything.
Same here. Giving up alcohol was so much easier than cutting out sugar. I still have the odd night when I would love to have a vodka but it passes pretty quickly. But when I crave chocolate there's no substitute. I'm eating loads of fruit but it's not the same. I think I spent about an hour today fighting the urge to go out and buy a big chocolate cake but I know that 1 slice wouldn't be enough so managed to restrain lol. I do still have a chocolate but just not as often. Your right it's hard enough without totally giving it up.
I keep a small amount of sugar free Russell stover chocolate on hand so I can have a small piece.... and there is blue bunny sugar free ice cream... just when u r eating that u have to account for the fat in them and regulate in to diet for the day
I have not tried the sugar free candy or ice cream. I have to look for that next time I go to the store....as long as the fat is still there it might be all right. Haha
😊
Beware of the sugar free candy and cookies! The sugar alcohols in them will give you serious diarrhea if you eat too many. It's potentially a great way to keep your consumption down but I have never figured out what the magic number of candies is for me between what is fine and delicious and what sends me running to the bathroom - so I stay away from them.
Thank you. I'll keep that in mind
Great idea. I'll have to look out for that.
I'm a little more itchy too. Could be my imagination though. I have an itch and Ithink "Oh, there it is" I didn't have an itchy problem before the diagnosis. If I get enough sleep I don't have a tired issue. I often fall right to sleep but wake up about 2 a.m. Then I have trouble getting back to sleep and often just stay awake. I do have a dental issue. I have lost 5 teeth this year. They are being replaced with dental implants. I hope I don't lose any more.
-Pam
I had the itch already - I was blaming the washing powder before lol. I've lost 2 teeth too in the last couple of months but I'm terrified of the dentist. Think I'll have to face it though. Seems to be quite an issue for us. Wonder if it's the pbc or the urso. Wouldn't be so bad if the tooth fairy turned up but she's on the missing list!
Hope you get further good news. Did you need to have a biopsy to determine if you have the overlap. My Hepatologist is waiting for my ALT to rise before she lets me have one. I am busy trying to get my ALT down. Could be a long job. The only solution seems if the overlap is present to prescribe immunosuppressants which I refuse to take.
I did have the biopsy and it did confirm the PBC and said I have fibrosis. This was a bit of a relief because since February they were telling me I had cirrhosis. But the GI doctor was unsureaabout the AIH and the lab the studied the biopsy was confused about the sample and called the G.I . for moreinformation. So I may or may not have the AIH. One week from today I am going to see the heptoligist and maybe he can make sense of my issues. I am not exactly thrithrilled about taking prednisone but as of the moment I plan to do whatever it takes to get better.
What is it that you do to get your ALT down? I'm pretty sure mine could use some improvement.
-Pam
Feeling a little frustrated
Making progress but feeling rough
That twingey feeling on the right side
Feeling faint after food
