Prolia treatment for osteoporosis: What is your experience?

Hi, JK.
Is this PM or just another way of posting to the group?

Or will one not wantto contradict the other?
Good point. If #2 has not looked at my record (?), I will start off  being vague about what #1 said.

I am absolutely fumingat my PCP that he dropped this ball. What was his excuse?

I lost weight (thatprobably contributed to osteoporosis!), Me too! My BMI is very low and myfather had osteoporosis....died soon after a fall which broke his hip.

I am also meeting with my (concierge) PCP in between endocrinologist visits, soI will have 3 opinions.She used to work in Partners, but now can contradict anyone she wants... doesn’t recommend oralmedication because I have swallowing issues (another mystery!)....put that in a note to the Brigham doc.
If you PM me after 10/10 I will give you names of  endos. and more information.

I know when the icydays of winter arrive I will be a wreck.  I use something like ski poles, just in case Ihave to walk on ice.
Now I am prettydiscouraged.
Focus on what you cando (within reason) going forward. Easy to give advice, I know.
mslw

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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.

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I'm not sure it matters all that much. A number of years ago, my gynecologist referred me to an endocrinologist as around the time my osteopenia was approaching osteoporosis. This particular endocrinologist heads up the Osteoporosis Clinic at a major hospital in my city. I am also aware of rheumatologists who also take a strong interest in and include treating patients with this problem as part of their practice. Years ago, I volunteered at the Osteoporosis Society and those who came to lecture were either rheumatologists or endocrinologists.
I still see that same endocrinologist and finally started on Prolia after refusing to do anything for over four years (while my bones got progressively worse). My fourth injection is in November. My bone density has definitely improved.

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I'm not sure it matters all that much. A number of years ago, my gynecologist referred me to an endocrinologist as around the time my osteopenia was approaching osteoporosis. This particular endocrinologist heads up the Osteoporosis Clinic at a major hospital in my city. I am also aware of rheumatologists who also take a strong interest in and include treating patients with this problem as part of their practice. Years ago, I volunteered at the Osteoporosis Society and those who came to lecture were either rheumatologists or endocrinologists.
I still see that same endocrinologist and finally started on Prolia after refusing to do anything for over four years (while my bones got progressively worse). My fourth injection is in November. My bone density has definitely improved.

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I remember reading that bones can become brittle as part of the “density” improvement process.
...will do some research before starting meds, and would appreciate hearing from anyone on this subject.
Thanks in advance.
L.W.

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The abbreviated version as I understand it. The normal bone remodeling process replaces your bones. Osteoclasts munch away some bone, then is followed by osteoblasts who replace that bone with new strong bone. Thereby remodeling and replacing your entire skeleton in cycles. This process slows down as we age, or can be short circuited by disease. This can leave aging bones weak and brittle. In women the lack of estrogen further complicates this by leaving the new bones less dense. The process used by this class of drugs also short circuits this process in a controlled way. 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. The limit on the one my husband takes is two years, then the bones go back to the normal process of remodeling. Until his disease short circuits it, and causes the osteoclasts to eat more holes in his bones, then he goes back on to strengthen the remaining bone around the holes for two more years. Yes, there are risks to these drugs, like most advanced medicines. But we are living longer than our ancestors, and in a different environment. I believe most treatments are a risk vs benefit decision. Our doctors are here to help us crunch the numbers and make the best possible choice. This will be different for each of us. That being said, the only good decision is an informed decision. I hope this helps in the information gathering stage. I will be sending good thoughts your way.

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@auntieoakley As you say, the risks have to be weighed. For me, that meant finding the best possible doctor who treats osteoporosis and I think I have found one. Phew. I couldn't get an appointment until January but he sounds excellent and is a researcher along with seeing patients. He actually only sees patients on Wednesday afternoons. It sounds as if osteoporosis is a speciality of his so that has to be good, in my opinion.
JK

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Oh! Happy day. If you found a doctor you are comfortable with you are ahead of the curve. Yay!

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The abbreviated version as I understand it. The normal bone remodeling process replaces your bones. Osteoclasts munch away some bone, then is followed by osteoblasts who replace that bone with new strong bone. Thereby remodeling and replacing your entire skeleton in cycles. This process slows down as we age, or can be short circuited by disease. This can leave aging bones weak and brittle. In women the lack of estrogen further complicates this by leaving the new bones less dense. The process used by this class of drugs also short circuits this process in a controlled way. 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. The limit on the one my husband takes is two years, then the bones go back to the normal process of remodeling. Until his disease short circuits it, and causes the osteoclasts to eat more holes in his bones, then he goes back on to strengthen the remaining bone around the holes for two more years. Yes, there are risks to these drugs, like most advanced medicines. But we are living longer than our ancestors, and in a different environment. I believe most treatments are a risk vs benefit decision. Our doctors are here to help us crunch the numbers and make the best possible choice. This will be different for each of us. That being said, the only good decision is an informed decision. I hope this helps in the information gathering stage. I will be sending good thoughts your way.

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