Discontinuing Prolia (denosumab): How can it be done safely?
A friend of mine had osteopenia and her doctor put her on Fosamax despite My showing her the studies say not to. They transitioned Hard to pro Leah because it was “easier“ getting a shot twice a year. Over Covid She need a dental work and went off the prolia. The dental work got dragged out because of Covid And her numbers were in the toilet and suddenly she had a severe chance of a fracture. She went back on prolia and I nagged her endlessly To get a tubular bone score.
The TBS was excellent her overall chances of a fracture Is now very low.
She asked her doctor how she could go off Prolia now and he said no you should stay on it. That’s why your tubular bone score was so good. Which is ridiculous.
She wanted to other specialist and no one had a suggestion as to how she could get off Prolia other than to transition to Fosamax, which she doesn’t want to take either.
Another doctor said she could just stop taking prolia and bone density tests.
Has anyone here ever successfully gotten off all drugs?
Interested in more discussions like this? Go to the Osteoporosis & Bone Health Support Group.
+14132539777 Keith Mccormick. He's great. Tell him I said hi.
Dr. McCormick knows a lot, but it takes three months to get on his schedule. I called in early October for a follow-up, and they booked me for end of January. He does phone consults all day, every day, because he's so popular.
@njx58 it takes awhile to schedule an initial consult but it is easier once in to schedule a 15 minute follow-up. He has recently given up chiropractic work and his administrative assistant says he is inundated with osteoporosis folks!
I didn't have that experience. But I'd say he is well worth waiting for.
Thank you for Keith’s number. After all the negative reviews regarding Prolia, i am seeing my endo this Thursday to discuss. Cant thank everyone enough for their opinions and references. I wish i could stay on Reclast as i have never experienced one side effect or had any fractures.
Let us know what he said. He knows so much more than any of the many doctors I met with
Please respond if you have been on Prolia and you like it. Doctors are pushing me to take it. I have severe osteoporosis.
@mariannepp if you have severe osteoporosis, my doctor would never prescribe Prolia. In fact he doesn't like to use it all. If severe, your osteoporosis might benefit from doing an anabolic first (Forteo, Tymlos or Evenity). That is the recommended sequence. You might benefit from McCormick's book "Great Bones" and maybe watch Dr. Ben Leder's videos on YouTube.
I did take prolia for just a few treatment in the year before the pandemic. I did see an increase in my bone scores and no rebound from it.
I also had zero side effects from it. I did everything they said in keeping my calcium levels even, and drinking lots of water.
I know that you hear a lot of negative about things on these pages, but that is because the vast majority of people who get these drugs don’t have issues and have no reason to be here. It is the same with any medication, the folks who do have the side effects go looking for support and answers in conversations like this one.
If you are uncomfortable with your doctors recommendations, are you able to get a second opinion?
@mariannepp, my mother has been on Prolia for years and it was the right choice for her.
From Mayo Clinic:
"...some women aren’t sufficiently helped by bisphosphonates, and some can’t take them due to issues with swallowing, stomach upset, heartburn, low-functioning kidneys, or other side effects, such as bone or muscle aches.
...the drug denosumab (Prolia) has emerged as an alternative to bisphosphonates for the treatment of postmenopausal osteoporosis. Denosumab may be considered a first-line treatment for women with osteoporosis who are at high risk of fracture or in women who can’t take bisphosphonates. Since denosumab isn’t metabolized by the kidneys, it’s also a first-line option for women with more advanced chronic kidney disease." Read more:
- Mayo Clinic Q and A: Finding the right osteoporosis medication https://newsnetwork.mayoclinic.org/discussion/mayo-clinic-q-and-a-finding-the-right-osteoporosis-medication/
This article outlines the function of the various medication options available:
- Osteoporosis treatment: Medications can help https://www.mayoclinic.org/diseases-conditions/osteoporosis/in-depth/osteoporosis-treatment/art-20046869
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I'm sorry that you feel doctor are "pushing you to take it." That's not a good feeling and you want to feel confident in the treatment you will be taking. Sometimes online forums like this one can cause fear about medication. Rather than instilling fear, I encourage you to use the experiences you learn here to ask your doctor questions and to make an informed decision with your doctor.
Prolia might be right for you, but ask why. Here are a few of the questions I suggest:
- Of all the medication options, why is Prolia your first treatment choice for me?
- How long will I have to take Prolia?
- Is it safe to take Prolia long term (for the rest of my life)?
- What if it stops working?