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

Interested in more discussions like this? Go to the Osteoporosis & Bone Health Support Group.

@windyshores

For others: I cannot handle large doses of medicines that stay in the body, like @artscaping. However I have GERD and cannot take oral alendronate. My doctor is giving me 1 mg Reclast, rather than 5mg, and would even do .5mg, and I can have that every 3 months or every 6 months. I saw another endocrinologist who said "we do that all the time." Studies show that 2.5mg is as effective as 5mg on the usual schedule. My doses will be more frequent, 2-4 times/year. I'll post on how it goes.

It helps to have doctors who will work with you flexibly.

Also, I have been told I can wait 2-3 months after Evenity to start the Reclast. With Tymlos, I was told to take it right up until the first dose of Reclast.

Sorry to be off topic here though I suppose Reclast is relevant to getting off Prolia!

Jump to this post

I hope you do well with reclast. I also have issues with drugs. My doc says my body processes drugs slower. I am happy to know that you have a couple of Endos willing to do the smaller dose. I asked mine about it and she instantly said no. No studies to prove it works and insurance won’t allow it. So I’ll be searching for another doc for when I am at the end of my bone builder
Best wishes to you.

REPLY
@gently

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.

Jump to this post

gently, thanks for the reply. May I ask how much you weigh? Are you eating something salty right before the shot?

REPLY
@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.

Jump to this post

Do you know of anyone who has successfully come off of Prolia? I have been on it for 2 years. I do have a history of vetebral compression fractures. I was not made aware of the issues of coming off it before I started. My endocrinologist wants me to be on it for at least another year. Dr. McCormack recommends only 2 years. I do wish to come off due to the issues that can arise, however, I am concerned about doing that very thing because of all those same issues. . I am very concerned. Any thoughts.

REPLY
@awesomemomx2

Do you know of anyone who has successfully come off of Prolia? I have been on it for 2 years. I do have a history of vetebral compression fractures. I was not made aware of the issues of coming off it before I started. My endocrinologist wants me to be on it for at least another year. Dr. McCormack recommends only 2 years. I do wish to come off due to the issues that can arise, however, I am concerned about doing that very thing because of all those same issues. . I am very concerned. Any thoughts.

Jump to this post

@awesomemomx2 you are in a tough spot and I wonder if the decision also depends on your current DEXA scans and how much progress you have made in these two years. McCormick and others are saying the longer you are on Prolia, the more risks in getting off. The recommendation is Reclast for the transition. I hope you can talk with your doctor or McCormick about a long term plan either way.

REPLY
@leeosteo

gently, thanks for the reply. May I ask how much you weigh? Are you eating something salty right before the shot?

Jump to this post

45kgs
Yes, salt constricts your blood vessels witin seconds of consumption.

REPLY
@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.

Jump to this post

I've been researching this very question and recently found a study about the different treatment sequences you're discussing. It gets a bit technical, though there are charts included that are very helpful (I'm a visual person).

Here's the link followed by a couple of excerpts that provide an overview:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8567484/
"The primary objective of these post hoc analyses was to compare the probabilities of achieving a T‐score > −2.5 at the total hip or lumbar spine over 3 years with alendronate treatment alone versus treatment sequences of 12 months of romosozumab followed by 2 years of alendronate, or 12 months of romosozumab followed by 2 years of denosumab. An additional objective was to compare the probabilities of achieving non‐osteoporotic BMD T‐scores over 1 year of treatment with romosozumab compared with alendronate."
"After 3 years of treatment, during which those patients initially randomized to romosozumab had switched to either denosumab or alendronate, the probability of reaching a total hip or lumbar spine T‐score above −2.5 was dependent on treatment sequence."

REPLY

I have been on Prolia almost 5 years when I went from osteopenia to osteoporosis. After 2 years my bone density went back yo osteopenia.
So my Endocrinologist has monitored me closely during those 5 years with multiple blood test and is now evaluating me to see if I can discontinue the Prolia. I will have a bone density test first. He did several X-Rays and had me se e a Rheumatologist who did other x-rays and results better than expected. According to recent studies if there’s significant improvement after 5 years one can come off and be given 1 Reclast in 6 months to help prevent rebound. So hopefully I will be one of the lucky ones to succeed in stopping. My Endocrinologist is really into close monitoring and I have been with him for over 10 years.

REPLY
@joann1941

I have been on Prolia almost 5 years when I went from osteopenia to osteoporosis. After 2 years my bone density went back yo osteopenia.
So my Endocrinologist has monitored me closely during those 5 years with multiple blood test and is now evaluating me to see if I can discontinue the Prolia. I will have a bone density test first. He did several X-Rays and had me se e a Rheumatologist who did other x-rays and results better than expected. According to recent studies if there’s significant improvement after 5 years one can come off and be given 1 Reclast in 6 months to help prevent rebound. So hopefully I will be one of the lucky ones to succeed in stopping. My Endocrinologist is really into close monitoring and I have been with him for over 10 years.

Jump to this post

Can you site the recent studies that you mention about Prolia and 5 years? What type of test did you endocrinologist order for you? I am looking to go off Prolia and who appreciate information on the best way to go off of it. I am also looking for a endocrinologist who closely follows with bone turnover markers. I have been reading Dr. McCormack's book " GOOD BONES " on how to come off it. Also looking for first-hand experiences from people who have done it. I am very concerned.

REPLY
@awesomemomx2

Can you site the recent studies that you mention about Prolia and 5 years? What type of test did you endocrinologist order for you? I am looking to go off Prolia and who appreciate information on the best way to go off of it. I am also looking for a endocrinologist who closely follows with bone turnover markers. I have been reading Dr. McCormack's book " GOOD BONES " on how to come off it. Also looking for first-hand experiences from people who have done it. I am very concerned.

Jump to this post

Hi awesomemomx2,

I started a discussion on stopping Prolia which you might find helpful. You can try the link below or if that doesn't work, click on my profile and look under "Discussions":
https://connect.mayoclinic.org/discussion/support-for-those-quitting-prolia/
In there, i have posted some links to studies that i have come across which will provide some guidelines on how best to quit Prolia.

Fyi, I am in the process of quitting Prolia after 3 shots. You are in an important juncture because once you have been on Prolia for over 2-2.5 years, it becomes that much harder to mitigate the possible rebound effect

All the best to you and everyone here

REPLY
Please sign in or register to post a reply.