Prolia treatment for osteoporosis: What is your experience?

“It prevents the osteoclasts from munching away while you take it, and adds strength to the bone you have. This short circuit in remodeling can leave bones brittle.“
“...adds strength....leaves bone brittle.” Does that mean “strength,” but “brittle” long term? Or am I missing something? Thanks!

It is more complicated than I truly understand but by short circuiting the regular programming, it can lay in bone that doesn’t get eaten away right away by the normal process. But because if you stop The remodeling completely for long term, this can leave the bones brittle, this is why there is a two year time limit on some of these drugs. I also learned this is dose related, if you are receiving one every month it is a lot different than taking it every six months. I am speculating that maybe slowing down the osteoclasts but not stopping them completely is better. The other variable is the slowing of bone remodeling from age. Please talk to your doctor to get your specific recommendations. This is a complex problem with more complex risks and benefits than I can truly understand. I just wanted to give you the basics of how these drugs work. Please know that this is the incredibly simplified version that I was given at Mayo Clinic. If you have a chance to go to a Mayo, do it. They give you all the answers you need to be comfortable. We were there for my husband who has a complex disease and this one just one arm of our visit.

I had been on Prolia for 2-3 years, while on it I had 3 compresssion fractures,T6,7 and 8,also a fractured rib. Had a full body scan in July ,which showed I have severe osteoporosis. My dr. Wanted me to see a Rheumatologist and start Forteo injections,but I couldn’t get in until May 2020. She said she would order it for me ,but had to get an authorization ! Ineverheard anything from her. Meantime ,I started having neck shoulder and arm pain ,went to see a PA,as I couldn’t get in to see my dr.,told her my story and she said she has seen better luck with ProliathanForteo ,she wrote a lengthy note to my dr. And I finally got a call saying my drs. Was putting me back on Prolia. Was going to go for my b-12 shot and Prolia shot ,butTHENI heard from a friend that her Rheumatologist said Thatshe shouldn’t be onProlia ,it sometimes “triggers things”. Whatever that means ....remember that I had been on Prolia when Ihad allmyfractures!!!! Called my dr.,spoke to her nurse’s voice mail ,but never heard back ! Don’t know what to do now ...am thinking of going to Urgent Care for an X-ray and go from there!

When I was diagnosed with osteoporosis 9 months ago , my primary care dr had his nurse call to tell me.
In 1 quick sentence she sd I had Osteoporosis & 'dr said take either Prolia or Reclast'.
I didnt know what those were & she didnt explain but said there was 'no rush' to decide on which one I wanted to do.
Didn't even tell me to come in & talk with the dr so he could tell me about Prolia or Reclast and really he certainly
should hv referred me on if he couldn't explain to me what type of meds they were.

I did my own Google search & scared myself reading all the side effects of both.
After 3 months of worrying I choose Prolia injection after joining MayoClinic Connect online & reading the pros & cons.
Then after I got the Prolia injection, I read that osteoporosis should be treated by an Endocrinologist so I went to my Primary Care dr & he said 'absolutely no' to referring me on to an Endo but he would refer me to a Rheumatologist which took 3 months to get an appt with. So a lot of WASTED time trying to doctor myself & find the path to who could treat me for osteoporosis.
I was very irritated by that time when I finally got to see the Rheumatologist a 2 1/2 hr drive to another city.

Rheumatologist sent me for full blood work after my appt with him to check Vit D & Calcium levels which came out OK.
His nurse called me within the week to tell me my D & Calicum levels were fine. Nurse didnt tell me my numbers so I went to medical records & got a copy of my full panel.
My Vit D = 70 (30-100 ref range) My Calcium = 9.2 (8.6-10.3 ref range)

Rheumatologist asked why I was on Prolia & said he would have put me on the Reclast IV once a year & said it was cheaper than the 1450 every 6 months for Prolia. I dont know what he was basing his decision on regarding liking Reclast rather than Prolia .
It can't be just because its much cheaper.
He talked way too fast & didnt want to go into the WHY of it but went on to tell me how osteoporosis is a death knell & if I fall & break a hip 60% die within the year.
When I came out of that appt I had a lot of anxiety wondering about his unexplained concern that I chose Prolia over Reclast
and I'm just about due for my 2nd Prolia.
I do read all the comments on this Mayo Connect site noting how others are dealing with their osteoporosis.
Very challenging time of our lives to stay as healthy as we can.

I had 7 shots, one every 6months for 3 1/2 years. I had a severe jawbone infection due to these shots. I have had to wait it out 6 months to get it out of my system and now recover from the infection. I am taking strong antibiotics for this and praying it will get better soon. It has been horrible pain!

@kay71 that pretty much aligns with what my dental hygienist told me last week. I had an appointment and asked her about how these drugs affect your jaw and mouth. She told me that you have to wait as long as the drug is effective so it gets out of your system. If you have the medication every six months you have to wait until the six months have elapsed before having dental surgery. ReClast would be 12 months since your last injection. The ones you take daily don’t have a long wait period.

I cannot say if that information is accurate but that is what I was told. I have no idea if they have other negatives that affect your mouth and jaw, or if it’s just if you need surgery.

Anyone considering these drugs should speak to their dentist and find out what their dentist says about them. If I do end up taking one of them myself I will ask the prescribing doctor AND the dentist herself.
JK

<br><br> <br>I appreciate your response and that of others in the group about the efficacy of Forteo and Prolia, but I am disappointed that no one mention how much improvement (% according to a dexa-scan) they have made. I have 3 friends who had the 2-year treatment with Forteo. Results were 0%, 2% and 5% improvement. I don't happen to think that small amount of improvement is worth the risks involved with Forteo and the user reviews I've read are not at all reassuring as some reported horrendous pain and disability after starting the treatment. About Prolia, same thing - small improvement (2 %) that hardly compensates for the risks involved. A doctor in Canada even told a traveling companion of mine  - "Don't you DARE go on Prolia - it's very hard on the system."

I have heard the same from a Rheumatologist from Canada,” don’t go on Prolia” ....but what’s a person to do with severe osteoporosis,???? Can a PC ever prescribe Forteo or does it have to be prescribed from a rheumatologist? I can’t get in to see one until May of next year! I have had multiple compression fractures T6,7and 8 and also a fractured rib ,wore a back brace/vest for awhile ,saw a PA who said she has seen better results with Prolia vs Forteo! This all happened in early April of this year,still having pain all over after being put back on Prolia,I had been on Prolia for 2 years and still had the compression fractures,I I never fell at all! I did have a full body scan on July 1st, that is what showed my severe osteoporosis. I am 69 yrs. old and used to be very active ,now emptying my dishwasher is Painful!