The Doc took me off Urso because of hair loss and itching. I have noticed that Livdelzi has not stopped the hair loss at this point and itching has increased. I will be talking to Doc about it. I had to jump some hoops because the Livdelzi was just approved last June 2024. My insurance informed me that the cost of this drug was 12,000 a month but my co-pay was 20.00. That was WOW information. Always an adventure with this disease.
I started Livdelzi a few months ago after taking Urso for years with little movement downwards of liver enzymes. But I've developed a craving for sweets and didn't connect it to the medication until I saw your post! I'm not a big sweets eater, but find myself making a lot of cobblers to satisfy that craving. Most times I'll eat a little, then give the rest to my nephews or son. Thanks for sharing that.🙂
I'm sorry that medicine is so much! I remember when I first started taking URSO 18 yrs ago and it was $1500 a month. Crazy! Now it's in generic and only $3 a month and it's exactly the same medicine...hmm Anyways, I digress. I started to have hair loss and started taking collagen and it has helped so much, and also really helped my joints and nails.
I take both. My numbers were dropping enough with just Urso. Thankfully I am getting help with the pay of Livdelzi from specialty Pharmacy. Otherwise it would be 2000 a month with Medicare. I haven't had blood work done it almost 6 months. I go in November and pray they are down. I also have the itching and weight gain. My cravings for sweets is terrible.
Hi Belva, I just saw my doctor at UCLA liver institute and she told me about the new drug Livdelzi. Since I have had PBC for 24 years and the URSO is working, she saw no need to change things up. Can't believe the cost of the drug. I fight with my weight all the time, too. Bummer
They just added Iqirvo to my Urso. I haven't noticed any weight gain yet.
My hair is thin already. Maybe have lost a few more. I'm keeping an eye on
both.