Livdelzi

[gwillistexas]

Is anyone else taking Livdelzi?

[butterflyEi]

Is this the new drug also known as Seledalpar? I am on URSO but I think you did not respond? I know someone on Seledalpar who has had a good response.

[gwillistexas in reply to butterflyEi]

Yes that’s it. I’ve done okay with this drug do far. I couldn’t take Iqirvo. I am healing a fracture in my foot since January but my hep says nothing to do with Livdelzi. I find it strange how drs defend medication when fractures are a definite risk with Livdelzi.

[SashaCP]

I've been on it about 3 months. Labs after 1.5 months showed a strong positive response - I'm hopeful that will continue. Urso has worked-ish for me for 12 years but my numbers started to climb in the last couple of years.

[gwillistexas in reply to SashaCP]

Thank you. That’s encouraging. I will have labs mid-May. I’ll be anxious to see the results.

[DonnaBoll Administrator]

Seledalpar has been very promising in its clinical trials. Now that we have another drug for treatment it could be a game changer for those who don't respond to Urso. Let us know how you do.

[gwillistexas in reply to DonnaBoll]

Thank you. I will.

[kishna]

I have been prescribed. Have not started yet, due to other issues. I am concerned with this drug for this reason. I am very petite. My doc played down the risk of fractures. But I’m not sure.

[gwillistexas in reply to kishna]

Same here. I lost a lot of muscle and weight the 7 years I took ocaliva. I weigh 90 lbs after all was said and done. My normal weight for years was 112. I have osteopenia but have never had issues. This foot fracture has me very concerned. The second day in this ortho boot, I lost my balance and fell flat on my back on concrete. No break and no fractures. So I do have to question Livdelzi. But I’m in a catch 22 because there are no other drug choices for me. It’s kinda scary. Keep us posted

[kishna in reply to gwillistexas]

Sorry to hear that is your only option. You sound alot like me. I currently weigh 99 lbs. Normal is 107-110. I do not have osteopenia. Get my DEXA scan every two years. Due this year. My doc said he could prescibe Fenofibrates, but was pretty adamant on Livedelzi. Could have somthing to due with that he is very involved in all the trials for new drugs. Plus I got the guilt trip that they did alot of work to get me the Livdelizi at not cost to me. I am still a little nervous.

What did you do to fracture your foot?

[gwillistexas in reply to kishna]

Yes, my hep has been involved in many drug trials. He told me in the beginning that there is no data directly connecting Livdelzi to fractures. I see him in May and we’re going to discuss further. I definitely understand how hard it was to get the drug. Like yourself, I get it at no charge. I did nothing to cause the fracture. The orthopedic surgeon said sometimes it just happens. He says it is a stress fracture. I’m sure we will be ok. All we can do is pray and keep the faith in our dr.

[DonnaBoll Administrator in reply to gwillistexas]

Are you due for another Dexa scan soon? many get them every 2 years. I am currently doing exercises to help with my own balance issues. You might investigate that from a physical therapist after you recover - just a thought.

[gwillistexas in reply to DonnaBoll]

Thank you. I’m a little overdue on my Dexa scan. It’s been on my mind so I’ll probably schedule sooner than later.

[Floridachick]

just started it January 2025.

Diagnosed in June 2014. Took only Ursodiol for 5 years and ALP went to 808. Went to Mayo Clinic in Jacksonville and they put me on Ocaliva 5mg.

Over past 5 years lowered ALP to 188. Now trying Livdelzi to see if I can get it to “normal“ range. LFT’s done after 30 days - ALP is 178.

Blood work again in 69-90 days 😊

[gwillistexas in reply to Floridachick]

That’s good to hear. For me Ocaliva was the ideal drug. It knocked my ALP down a lot in the first 2 months and it stayed down until about a year and a half ago. It started fluctuating then steadily increased so we had to do something. My hep had offered me to get off it and then when we received the last FDA warning there was no question on what we had to do. I hope your labs continue to do well.

[Floridachick in reply to gwillistexas]

You too!

[DonnaBoll Administrator in reply to Floridachick]

just keep in mind that many of us with PBC never get to that 'normal' range but have had significant improvement in our numbers. Some experts even believe any Alk Phos less than 200 is good. Sure sounds like your numbers are certainly improving.

[Floridachick in reply to DonnaBoll]

Yes, thanks