Thoughts on Prolia?

Posted by sheezit @sheezit, Mar 28 10:48am

Diagnosed with Osteoporosis. Drs recommend Prolia. Do not like taking medications especially oral. Last resort would be Prolia as injection. Looking for opinions on this medication. Thank you

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@gravity3

I tolerated alendronate very well for 5 years. Now on shots 7 of Evenity. Any reason why I shouldn't go back on alendronate after evenity I stead of prolia or other thoughts.

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The Evenity website suggests Prolia. Amgen makes both! I see that as sort of like an ad!

My docs use Reclast but alendronate is good too. My docs won't use Prolia because of the risks in getting off.

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@windyshores

The Evenity website suggests Prolia. Amgen makes both! I see that as sort of like an ad!

My docs use Reclast but alendronate is good too. My docs won't use Prolia because of the risks in getting off.

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My endocrinologist doesn't think I should go back to a bisphosphonate but I wonder if he is clear on sequencing and .

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@gently

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.

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Thanks for your input. My doctor wants me to try Prolia. Evenity didn't work, my Dexa was a lot worse after 10 months on the injection.

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@gravity3

My endocrinologist doesn't think I should go back to a bisphosphonate but I wonder if he is clear on sequencing and .

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@gravity3 my understanding is that going on a bisphosphonate after Evenity is to lock in gains and not so much treatment and maintaining those gains. The only other option is Prolia but that leads to a bisphosphonate anyway, when stopped. Prolia can work really well but you can also lose your gains when stopped. One option people here have suggested is to do Prolia just 2-3 times and then a bisphosphonate to get the boost in bone density from Prolia but minimize the risks from rebound when stopped.

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@sbcher

Thanks for your input. My doctor wants me to try Prolia. Evenity didn't work, my Dexa was a lot worse after 10 months on the injection.

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@sbcher so sorry Evenity did not work! Had you done any meds before Evenity?

As I wrote before, I have seen suggestions for Prolia just 2-3 times to get a boost, while minimizing rebound, and then going to a bisphosphonate. Maybe that is in a study stage but you could ask your doctor.

It seems that noone is doing Forteo or Tymlos after Evenity. I have not seen data on that, only on the reverse sequence. You could ask about that too.

It seems that bisphosphonates aren't used for bone growth so much as "locking in" gains for more severe osteoporosis.

Let us know. We are all learning since Evenity is so new!

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@windyshores

@sbcher so sorry Evenity did not work! Had you done any meds before Evenity?

As I wrote before, I have seen suggestions for Prolia just 2-3 times to get a boost, while minimizing rebound, and then going to a bisphosphonate. Maybe that is in a study stage but you could ask your doctor.

It seems that noone is doing Forteo or Tymlos after Evenity. I have not seen data on that, only on the reverse sequence. You could ask about that too.

It seems that bisphosphonates aren't used for bone growth so much as "locking in" gains for more severe osteoporosis.

Let us know. We are all learning since Evenity is so new!

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@windyshores Thank you. Yes I was taking the once a week pill, cannot remember the name. Starts with an A. Then started Evenity. My doctor wants me to finish Evenity, two more months then start provia. I'm a bit nervous about all of it. Its difficult with Evenity being a new drug. there's not a lot of feed back yet.

Good luck to you as well. Take care

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I am 81 years old and I had three shots of Prolia before my current doctor gave me the choice of either remaining on Prolia for the rest of my life, or switching to Reclast. She felt now was the perfect time to make the switch since I hadn't been taking Prolia for that long. She said they are switching most of their patients from Prolia to Reclast because of the bone resorption but because of my age, if I chose to remain on Prolia for the rest of my life, I could do so although she recommended I make the switch. I had my first Reclast infusion with no side effects whatsoever. Glad I made the switch.

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Hello sheezit,

We have all been where you are now. It’s very overwhelming as there is a lot to learn in a short period. To complicate matters even more, osteoporosis is not a sexy disease so doctors don’t spend a lot of time learning the latest treatments and studies. With that said, I put together a training that covers all of the osteoporosis medications for people just like you based on my experience of learning about osteoporosis. I spent hundreds of hours doing research and attending the big osteoporosis conventions in 2023 where doctors train doctors from around the world. I think it’s pretty good to get your feet planted and be able to have a good conversation with your doctor about your treatment. I posted it on YouTube since it’s so large. https://youtu.be/Z4uXAsnhSaA?si=OPJ6EOx0iYqI2iRy . I put together a training specifically on Prolia as well https://youtu.be/XiRN3UvOEYg?si=9p1VZ7Wyyc0QhVyD . These are live trainings I gave to the BHOF support group Bone Buddies. I’m not a doctor and I don’t get paid in any way for putting these together, I’m just giving back to the community that helped me.

Just for reference, I started on Evenity with a spine T-score of -3.7 and moved to Prolia, which I'm on now.

Good luck on your journey!

Mike

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@sbcher

Thanks for your input. My doctor wants me to try Prolia. Evenity didn't work, my Dexa was a lot worse after 10 months on the injection.

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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.

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@leeosteo

gently, I'm starting Forteo on Monday. When do you take your shot, am or pm? Do you do anything else e.g., take with food, extra calcium, stay hydrated (8-10 8oz water)? I'm 115 lbs and nervous.

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leeosteo.
I take the shot in the uppermost part of my thigh. I always sit down recommended because the low blood pressure starts within a minute of the injection. I only know because I dilligently used a blood pressure cuff for the first month. And because my blood pressure is already low.
The low blood pressure happens because pth causes vascular dilation. It begins to resolve as soon as it starts, but can take several hours. Don't plan on using the balance bars or anything else that requires balance for safety.
Some patients get headaches as a direct result of the vascular dilation. Two things counteract that mechanism fluids and salty foods. It's a great excuse to eat something a little salty.

I take vitamin k2 around two hours before I take calcium. I want the k in the bloodstream when the calcium arrives and I want the calcium in the bloodstream when the Forteo arrives.
This could be a flaw in my (over)thinking. And might not even be helpful.
I started with the injection in the morning and waited for a reaction. Never felt anything. In the beginning I'd pinch the skin and then let go, so as to avoid bruising. You might look to avoid any little surface vessel that might bleed, also to avoid those little polka dot bruises.
If you have any dizziness, best to take the injection at night to avoid any falling.
I never got a headach or any dizziness or anything negative.
These needles are so tiny. You'll laugh.
Oh, I hope you have luck. Let us know tomorrow.

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