Thoughts on Prolia?

Has anyone experienced elevated liver enzymes with Prolia? I have been on Prolia now for over five years. At the beginning, my enzymes were normal. My doctor did not check them for a couple of years because I don’t use alcohol. All of a sudden we checked them in September last year and they were quite elevated. I have found two studies online that mention Prolia as being suspect in these cases.

Yes, but it is so rare. It's such teachery getting off Prolia. What will you do?

The elevated liver enzymes from late Sept. and a CT scan from Oct. pushed us to look at the liver, and I have now been diagnosed with congenital Caroli's Disease. Have never had any symptoms of that, nor had I even heard of it until December last year. Now I'm waiting to be evaluated by a gastro/liver specialist, but getting an appointment in a timely way is ...well, forget it unless you're desperately ill. Mayo wouldn't accept my Aetna Medicare Advantage PPO, so I needed a 2nd referral and am now waiting for them to call to schedule an appointment. In the meantime, I found a couple of studies that implicated Prolia for elevated liver enzymes. My PCP and gastro won't discuss this in depth...they just keep saying "it's so rare. " I asked if I should get my now over-due injection of Prolia or not...and I can't get a definitive answer from either doctor. Initially, my gastro discouraged getting it until I had seen the Dr. at Mayo, but that can't happen and we're back to the beginning waiting for an appointment with another liver specialist. I'm wondering if I need to see an endocrinologist to manage my osteoporosis, instead of leaving it up to my PCP. Such frustration!

sheezit,
I don't like the mechanism of action of Prolia. It is an antiresorptive. So it collects old bone and prevents the normal process of remodeling the bone. It holds osteoclasts the last stage of development. In doing so it collects they call it a resevoir of premature osteoclasts that are released on to the bone in a flood of acid when Prolia is discontinued
Osteoclasts (you may already know) are the acid producing cells that prepare the bone for the osteoblasts--the cells that lay down new bone. Our bones remodel all the time according to our activities, acutally laying down spicules in the best direction to remain flexible with the type of impact our activities generate.
In most patients Prolia protects the bone from frature. In some it causes fracture. And in all who don't replace the drug or are late for the subsequent injection, it wreaks havoc with multiple fractures. After Prolia you are recommended another drug that will tampen down the osteoclasts. These drugs continue to preserve older bone, slowing the process of remodeling.
Then there is Forteo. It's drug that builds bone, as does Tymlos. I think they are both wonderful drugs. They encourage remodeling and don't have any black boxes.
I've been on Forteo for almost a year without side effects, except that my fingernails are stronger.

@talleynovotny there might be concern being late and further delaying Prolia due to rebound. There are stories of fractures in that situation but I don't know how rare that is. You are between a rock and a hard place. This dilemma would merit an urgent referral for the liver issues, I would think, because you cannot go too long between Prolia shots and if you are stopping it, entirely, you need a bisphosphonate asap. I don't mean to be alarming and am only passing on what I have learned so check with doc.

@gently yes, I heard about all this just as I started on Prolia! I also heard one cannot have dental work done while on Prolia because one of the side effects is jaw necrosis. Thankfully, I had taken just one injection at the time and I refused to take any more, but I waited two years after that first injection before I got a decayed molar extracted, just to be sure I had no necrosis problems!

I am not covered for brand name drugs. Do Forteo and Tymlos have generic versions? I do better with brand named meds (because they are the original formulations - not because they are a “fashion statement”, lol) but unfortunately I often don’t get approved for the original brand name meds.

Alvogen is the brand for generic teriparatide (Forteo). Tymlos doesn't yet have a generic, which might work in your favor because Forteo (generic) or not is the best drug ever. I've switched back and forth because I don't carry prescription insurance. https://www.alvogenteriparatide.com/savings-program

sbcher,
the horror stories about Prolia are genuinely horrible. Still, it does work for some patients. Evenity is presented as an anabolic though after the first three month it works as an antiresorptive. It also works for some. And I'm glad you didn't have side effects with Evenity. Not as bad as Prolia, but long terms sometimes and very painful.
I would advise asking your doctor for Forteo, because it has been good for me. Still some have bad effect and for some it just doesn't increase BMD.
You might as your doctor for bone markers, so that you don't spend another day or dollar on a drug that isn't effective. P1NP and CTX before your next medication and one month in, then every three months thereafter. These tests are serum markers and easy to understand.