Livdelzi

[gwillistexas]

I just wanted to share about Livdelzi. My GP ran several labs the 13th of March (after covid), to make sure electrolytes, etc. were in balance. He included a CMP and my ALP had dropped from 177 to 109. My hep had ordered labs yesterday to see how Livdelzi was working. ALP down to 101. So far, I have to say it is doing what they said it would. If anyone is offered to try it, I say go for it.

[DonnaBoll Administrator]

We all celebrate such great lab results! This drug has had such great clinical trials and seems a long awaited alternative to Urso.

[gwillistexas in reply to DonnaBoll]

Yes ma’am. I’m a happy camper. I see my rheumatologist Monday and he runs full scale labs. I think he also includes CMP so we’ll see. I’ll say one thing, between my drs I’m always in check.

[DonnaBoll Administrator in reply to gwillistexas]

Good for you for having such diligent doctors who seem to really care!

[Gaspereaux in reply to DonnaBoll]

Donna, is it an alternative to URSO, or can your URSO dose be topped up with it?

[4pjx__]

This is great news! Are you feeling well on it! It seems like a lot of people are doing well on this medication. I hope it continues!

-Pam

[gwillistexas in reply to 4pjx__]

Yes, so far I’ve done great. Praying it continues. 😊

[4pjx__ in reply to gwillistexas]

It will! We have to be positive!

Don’t forget to keep us posted.

[gwillistexas in reply to 4pjx__]

I’m staying positive. I’m not easy to medicate. Couldn’t take URSO. Took ocaliva 7 years with zero problems. Tried Iqirvo and that was a no go. So I’m always happy to find something I can take. I’ll keep you posted.

[4pjx__]

I just signed up for the Iqirvo trial. What issues did you have with that one?

[gwillistexas in reply to 4pjx__]

I had bad brain fog. I work, do I have to have a clear head. It was bad enough I didn’t trust my judgment driving. Had trouble breathing. I had to yawn to try and get a deep breath. But not everyone has issues with it. You may do just fine on it.

[IAmTheGlue in reply to 4pjx__]

I am on Iqirvo and I am having amazing results! I feel like a new person, my fatigue is 100% gone. I'm so happy. It did make me sick initially, but I do have a lot of GI issues anyway so I was not surprised at all something different was upsetting my system. I have been doing so well on the medication. It has been life changing. I hope you have the same amazing results.

[4pjx__ in reply to IAmTheGlue]

Thanks so much for telling me this. I haven’t started it yet. I just went to the drug trial place to see if I qualified. They did some labs, an ekg, and vitals. Who even knows if I will get the real thing or the placebo but it’s the only way I can get it. I’m on Medicare and don’t qualify for financial assistance. It’s crazy

— Pam

[gwillistexas in reply to 4pjx__]

I have Medicare and a supplemental. But no prescription plan. Livdelzi has a patient assistance program which is great.

[4pjx__ in reply to gwillistexas]

I do have a prescription plan but I guess I’d rather go for the trial than try to fight an insurance company. I know, I’m chicken! Anyway, I guess I’ll see how it all plays out!

[gwillistexas in reply to 4pjx__]

Let us hear! I wish you well.

[butterflyEi]

Good to read your news gwillistexas great results

[gwillistexas in reply to butterflyEi]

Yes ma’am. Thank you

[IAmTheGlue]

Thats so awesome!! I'm on the other new medication, IQIRVO and I know that they both work similarly... but I will tell you in complete honesty, I feel like I have a second chance at life. I feel soooooo amazing. I am having the positive biochemical response, but beyond that, my fatigue is GONE. I'm making sandcastles at the beach with my kids instead of sitting in the chair and cooking dinner and gardening and thank the good lord for medical technology. I literally feel like I have a second chance at life. So amazing!

I'm so glad that the medication is working for you. I hope all PBC patients get one of these new medications in their hands.

[gwillistexas in reply to IAmTheGlue]

That’s wonderful. Isn’t science amazing. All these new drugs that cal help us. I hope you continue with a good experience and can live life and enjoy the little blessings in life 😊🙏🏻

[OrangeTulip in reply to IAmTheGlue]

Can I ask how long you’ve been on Iqirvo?

[Juhainar]

That's wonderful news! I'm so happy to hear that your medication is working well for you!

[kishna]

That’s great news! How long have you been taking the new drug? How is your foot coming along? I still have not started Livdelzi. Are you still concerned about fractures?

-Kishna

[gwillistexas in reply to kishna]

I think I’m about to start my 3rd prescription. My foot is doing good. I was scheduled to see the orthopedic dr March 7th but came down with covid and had to reschedule. I see him next Tuesday and hope to get the boot off. Yes I’m concerned about fractures. I see my hep in May and we will definitely discuss it.

[Twojer in reply to gwillistexas]

So glad you are having good success on the new medicine!

[gwillistexas in reply to Twojer]

Thank you!

[lovesoccer]

I’m glad to hear that you’re getting positive results. Continued best wishes !

[gwillistexas in reply to lovesoccer]

Thank you!

[TanGram]

Happy for you!! I'll start IQIRVO soon. I postponed due to a big family vacation. I'll do blood tests soon, see where my numbers are, and go from there. I'm being seen through the MAYO Clinic and I know the medicine is super expensive. Mine was 41k for a 3 month supply. I am lucky to have amazing insurance, I pay zero out of pocket for everything. My point is, there is help for supplemental payments, so be sure to check that out with your provider. I actually feel pretty good lately, but as we know, that can change fast. I stick to very clean eating and lots of movement. Keep moving , doesn't have to be excersize, just keep moving =)

[gwillistexas in reply to TanGram]

I hope you do well with Iqirvo and be sure to keep us posted. Livdelzi is over $13,000 for one month. May I ask you you have your prescription plan with?