The rise of LFT

[Chazzy]

Just had my consultant letter to start URSO nervous of the side effects.

Also my ALP gone from 135 in May to 158 in October. Is it normal for it to rise so fast. Normal top of range is 130.

[Hidden]

Hello Chazzy.

From experience of my bloods taken at intervals during 2010 when I started itching early that year (diagnosed with PBC December 2010) yes it is possible. Mine were rising each time.

I never wanted to take any medications, certainly not one deemed for life but I gave in and took it to see what happened. 2 months after starting my LFTs and also another blood GGT (usually taken with liver disorders) started to drop dramatically in the first 6mths of urso and then slowed down a bit.

[Chazzy in reply to Hidden]

Thank you

[Chrisprio]

Hi Chazzy,

I have read lots of medication information leaflets in my time and when I was first on Urso I was amazed at how few the side effects were. Even commonly used medications seem to have far more identified side effects. Having said that I responded to it by starting to itch (sharp prickling under my skin) and whilst it was really rather horrible it didn't last. My body must have adjusted to the Urso and after 6 weeks or so it had all settled down again. Everyone is different of course and I really hope everything goes well for you and that you respond well, in every way, to starting Urso.

[spoul]

Been on urso for 18 yrs. it has stabilised my liver function and I have no side effects 😊

[Chazzy in reply to spoul]

Good to hear!

[gizocsi]

Fifth year on Urso, and the only side affect is that my blood is better, and I'm feeling better. Go on, You know, I'm so sorry for worrying so much in the first years, when I knew not much about it, it's really not the worse illness, and we can have nice life still. Keep on, take care, be well and laugh a lot! G

[Chazzy in reply to gizocsi]

Day one going well so far! Hope it makes my blood better!

[Ktltel]

I was diagnosed with PBC 10/10/16 started URSO the next day. At first it seemed fine. ALP dropped from 155 to 147. But then the nausea came. Horrible nausea 24/7. I lost 22 lbs in 7 weeks. They just stopped the URSO 11/2/16. I'm crushed. Now what? I am in the early stages so I guess that's good. But URSO was making me SICK. It made other liver enzymes sky rocket and potassium plummet. I had to go to ER and have potassium infusion. Having another next Tues. Anyone else experience nausea while on URSO? Wondering what hope for me now?Small appetite is back... No more nausea since potassium raised and I'm off URSO.

[Michiganpbc in reply to Ktltel]

Can you try the other new medication ? I can't remember the name of it but heard about it ask your doctor, let us know ....

[Ktltel in reply to Michiganpbc]

Michiganpbc, I will find out. I've also heard there are different makes of URSO. Maybe another one cut with something else?? Anyone having no nausea? What kind do you take if it's possible to know what it's cut with. Every morning I wake up, I have anxiety. My life has changed and I've not yet adjusted to this new normal of hospitals, ER visits, needles, meds, and feeling sick. (Sorry for the pity party of one.)

[Michiganpbc in reply to Ktltel]

Don't be sorry I went through so much of what you are going through we all understand this is a good place to vent and get it out 🙂

I started URsodiol 250 generic 3 times a day no problems I have been on it since may it took a while for my body to adjust to it I had bloating gas constipation fullness , all much less and better now I still have right upper quadrant pain everyday right where the liver sits, I was told it could be from the PBC so I am not so worried about it like I use to be. 17% of people with PBC have this pain there I am quoting a source online can't remember which one as I have read hundreds of research articles on PBC it's on the rare disease lists so not many doctors know anything about it, even liver doctors don't know to draw a AMA this is what my liver doctor told me I was so angry that my GI doctor didn't pick up my symptoms years ago as I complained of liver pain and had slightly elevated liver enzymes she treated me for IBS which I never had and still don't . I have moved on from that drama and am with a good liver doctor now feeling better but still have pain I am stage 2.

[Ktltel in reply to Michiganpbc]

Thank you Michiganpbc, I've never had a biopsy. Just an mrcp scan. Showed bile ducts (no gallbladder ) as unremarkable and liver no cirrhosis. She never staged me. Just said I was in early stages.?? I see another doctor in Feb. That's the soonest I can get in. My GI sending me to Liver specialist for that appt. That's where I should be anyway.

[Michiganpbc in reply to Ktltel]

Yes a liver doctor treats the liver so you should be with a liver doctor and they can stage you by a liver biopsy.

[Chazzy in reply to Ktltel]

I'm very up and down. Not about the now but the future.

[Ktltel in reply to Chazzy]

How are you feeling now Chazzy?

[Hidden]

Mine elivated much higher than that in a few days

[Chazzy]

Hi everyone

Just wanted to say that my LFT are now all in normal range thanks to the urso. Had an awful few weeks when first started being ill but thankfully that subsided. My ALP gone down to 103 in December and now 96 in March - top of normal 130. Very happy and hope it continues