Prolia discontinuation

Evenity is in the same class as Prolia, Reclast and many others. I have no choice. The Prolia wasn’t doing great for me. I had a ct and they needed to use steroids because I’m allergic to iodine. The dr should gave known this could be a side effect. I’m very frightened that I can’t take anything.

Evenity, Prolia and Reclast work in very different ways. Evenity inhibits sclerostin. People with naturally low sclerostin have very thick bones and that gave researchers the idea to use it for osteoporosis.

I have read that initially they thought Evenity would only build new bone, the whole year (anabolic). But the P1NP bone marker for anabolic action goes up abruptly and then comes down. At least for the last 6 months, Evenity is anti-resorptive (like Prolia and Reclast but with a different mechanism) but less strong. So yes there is some risk of osteonecrosis but various sources of info (see below) say that it is not as much of a risk as with the other two.

If first 4-6 months are more anabolic, there is always the option to do those months. As another patient with high fracture risk, I did Tymlos and then just 4 months of Evenity. Because I only wanted the anabolic months.

For reference, "Great Bones" by Keith McCormick and Dr. Ben Leder's two videos on You Tube (he is an endo at MGH) are the sources of my information. Dr. Leder, in "Combination and Sequencing Approaches to Osteoporosis" has an excellent graph that shows both the anabolic and anti-resorptive action and timing of those phases on Evenity. That said, my doctor says they don't really understand how Evenity works.

There may be someone who has posted or will post here about having jaw issues on Evenity. I am just responding to the statement that Prolia, Reclast and Evenity are in the same class. Yes they all are anti-resorptives but Evenity is not the whole time and is not as strong an anti-resorptive as the other two. All three have very different mechanisms for bone density growth.

Your endo can explain this and I hope a solution is found for you in this hard position.

I did experience ONJ while on Prolia, after an implant procedure. The implants were removed in I am in the process of healing. I have been on Prolia for 7 years and I'm desperately trying to get off. Because of my jaw issues, I only can switch HRT as an alternative, which is not as strong or as effective in combating rebound effect. My only other choice is to stay on Prolia indefinitely. Plus, I can't prove it, but I believe that I have other side effects from taking prolia, including high blood pressure and high cholesterol. And now I'm on high blood pressure meds because they just discovered a blockage in my left ventricle, which most likely be caused from high blood pressure or sleep apnea (I also have the latter and haven't used my CPAP in years). I'm in a pretty bad position... I am only 70 years old and I thought I would live a longer, but these multiple problems all stemming from Prolia use in my opinion don't seem to end. I also have possibly hyperparathyroidism, which might endocrinologist is in the process of checking. I just started going to her and am in the process of getting blood work to figure out if I have enough markers to have my parathyroid removed. Currently there is only one criteria that's being met so they can't get to the bottom of my problem, I'll be at square one again.

jheieck, high cholesterol is a common side effect of Prolia. High blood pressure is also an often seen side effect.
Hyperparathyroidism is seen in Prolia patients as it is acompensatory reaction during use and can resolve after cessation. The parathyroid is four small glands. You may need only one removed or the issue may resolve when Prolia is completely gone from your system.
Your posts are greatly appreciated.

I ask again help. What to do.
I have lived in America 23 years- marriage. My husband begged me not to work and I was a housewife all these years (my education is a rocket science) and I do not know simple things of life here. I did density in1 year because I search and found code for early density and how describe a patient for Medicare. I sent this information my doc on her portal and PA wrote me that they hoped it would go through. I told them that it needs doc to call provider line of Medicare but they did not do that, so I found by myself.
For Reclast there is no any any information how to order smaller dose of Reclast, I searched. searched, but nothing.
I wrote again my doc 5 months ago and asked her to call Medicare for small doses of Reclast. No answer from her. But she told me that for cancer patient Medicare allows to reduce dose of Reclast. This time I asked her a half of dose, no answer too.
5 months ago PA wrote me that the prescription is in Center because of my first infusion and I need to ask them to reduce dose. I do not understand one thing, doctor's occupation is merciful, what is wrong to call Medicare to help a sick person?
My question - can I asked a nurse in the Center , where I will do Reclast infusion to give me only a half of Reclast- to come in 30 minutes and finish the infusion? Can I give her 20$ as a thanks, I want to give her in the beginning or it is prohibited ?

whiteswan,
while it is unusual to ask for a lower dose of Reclast and that may explain your providers reluctance, my opinion is that you need a new doctor.
You might call the infusion center and ask them if they are receiving prescriptions at a lower dose for Reclast. They can't legally change the dose. They
It seems that you are no more confused about how to maneuver through this medical system than your PA.
Even after living here for 73 years, it's tricky. One nice thing about Medicare here is that you can change doctors easily, though the md shortage has us with PAs and the wait for endocrinologist can be a few months. You might tell us what city you are in. Someone will know a good endocrinologist where you live.
Ask your PA to write for the reduced dose with the same code. The code is a diagnostic code which wouldn't change. At the same time ask them to request a longer infusion either in a note you can carry or directly to the infusion center.
I'm sorry you are having such a struggle inexcusable is the waiting 5 months with no answer from the PA.
Oh, I suspect the infusion nurse would not be allowed to take the 20$ (a common practice in China) either as an encouragement or as a token of gratitude.
They would stop the infusion if you had or complained of having a reaction. Although I think it is a 15 minute infusion and I don't know if the nurse would be standing by. And then you would't know how much of the dose you'd received.

The infusion should be an hour. And a patient, I would think, could ask for it to be stopped at any time. I can't be sure, but declining a medication is our right. The $20 is an absolute no.

Gently , thank you.
Gently, we moved to Melbourne FL from Atlanta 7 years ago. I was with 3 endocrinologists. First one I left because I think he simply waits his retainment and only recently a friend (bridge game group) told that he did wrong diagnose, removed her thyroid, it was a mistake, now she needs take pills every day. Then endocrinologist with whom I now and for second opinion I took an appointment with third, she is an endocrinologist of my husband, a wonderful lady. She prescribed me low doses of Reclast and Medicare called her and told that it is impossible. I stay with my endocrinologist because I thought she knows her subject good. But may be I am wrong, when after breaking my hand I came with a lot of printed researches how to discontinue Prolia, first question to me was Are you a physician? and she asked to copy all these papers.
I hope that words your favorite endocrinologist are right for me and 1 Reclast works 2 years. I read (I need to reread again) that Reclast after Prolia must be done 2 infusions. Tymlos and Forte DO NOT work after Prolia immediately, density after Prolia drops with these medicines according Mayo clinic. A code even for 1 mg of Reclast is the SAME, but it must be something else, Medicare told me that they can not tell me, they will lose their job.
So it looks so way, my husband feels better and second 5 mg Reclast must be done soon or later.1 month in bed or fracture', which weight more?
In Orlando there was a very good endocrinologist, but she moved. May be somebody from Orlando here?

Windyshores, thank you.

I'm happy you have a good endocrinologist.
Maybe: ask her to write a note to the infusion center asking them to dilute Reclast for a slower infusion and that they to watch you during the infusion for any side effects, because of your sensitivity to medications. Then midway you could ask that they stop the infusion.
If you aren't familiar with the stop flow on the IV line, you might ask the infusion nurse where it is, explaining that you fear anaphalaxis.
This is better because you won't have to wait and then suffer the process all over again.
Your endocrinologist does sound responsive, I'm never happy to be sidelined to a PA especially one who takes five months to respond.