Prolia treatment for osteoporosis: What is your experience?

I go to a rheumatologist, but I was already seeing a rheumatologist when he diagnosed me with osteoporosis. Other people see endocrinologists--it depends on the availability of different specialists and what they treat.

@ritafarmer Thanks, Rita. That's another doctor who I would not have expected to be involved with osteoporosis! I have an endocrinologist so I just checked his profile and it says his clinical interests are "General Endocrinology, Diabetes, Thyroid Disease" so I guess he does not deal with osteoporosis. I hope I can get in to see the doctor at MGH. Hopefully being a post-transplant patient there I will get a little priority.
JK

@llwortman Linda, I never used to check these discussions because I had no idea I had osteoporosis -- my PCP dropped the ball after I was diagnosed with osteopenia in January of 2014 and I never had another Dexa scan after my fracture occurred - I called and asked if I was due for one. Now that I know I have osteoporosis I am researching as much as I can so when I see a rheumatologist I will be somewhat informed. Is that the type of doctor you saw, a rheumatologist? I was very surprised when my PCP's office said I needed to see a rheumatologist.

It seems as if none of these bone medications are without some very real faults, we have to decide which are best for each of us, and hopefully have a really great doctor to help us through it. I know of at least one person who has osteoporosis but will not take a medication because of the side-effects but I am still recovering from my "minimally displaced fracture of the trochanter of L femur" so I know the pain involved in even a minor fracture like this and do not want that to happen again if at all possible. I have even read that 20% of the people with a hip fracture die within a year due to inactivity.

I thought I was doing all the right things, exercising, and eating well but I now know that I was at a fairly high risk because three of the drugs I take - levothyroxine, prednisone, and my immunosuppressant, sirolimus -- can contribute to weak bones, plus I have lost a very considerable amount of weight. I was basically a fracture waiting to happen, "the perfect storm".

Since you got off of Prolia, did you start taking a different drug?
JK

Like you, I thought I was doing all the right things, I lead a very active lifestyle and I eat well. It never occurred to me about the loss of estrogen causing me to have very early osteoporosis. Then I had a fall and crushed my whole right side. So much pain. I am concerned about new fractures. I like you I read the study, about dying after a fracture, it is concerning and so are side effects but a doctor you trust can help you through all of this. I also plan to ask my doctor about the side effects and the mounting evidence for rebound bone loss. Because I really have to err to the side of no more fractures. I am 54 and healed but I can remember all of that pain.

@auntieoakley, my best advice. Don’t fall. If you do fall, grab your shoulders and roll. Protect wrists and hips until you find out the results of the tests. My PCP requested the dexascan for hips and wrists. After 4 months of torturous bone pain reactions from Boniva, she sent me to an endocrinologist because other comparable medications contain the same ingredients. She requested spine, vertebrae, images to see if I had any fractures. I didn’t...just weak and thin. Doesn’t mean I won’t have them if I don’t strengthen and rebuild bone density.

Of the two medications that actually build bone, I chose Tymlos.

And so, I probably had to wait 6 months. I was SO careful. My mother broke her hip and died within a year. I am now getting ready to pick up another pen. The injections are daily for 18 months and once opened the product does not have to be refrigerated.

May you be free of pain and fractures and falls. Check in so I can follow the developments and your story. It can be shared so that others benefit from your experiences. Be free of discomfort today. Chris

@auntieoakley, my best advice. Don’t fall. If you do fall, grab your shoulders and roll. Protect wrists and hips until you find out the results of the tests. My PCP requested the dexascan for hips and wrists. After 4 months of torturous bone pain reactions from Boniva, she sent me to an endocrinologist because other comparable medications contain the same ingredients. She requested spine, vertebrae, images to see if I had any fractures. I didn’t...just weak and thin. Doesn’t mean I won’t have them if I don’t strengthen and rebuild bone density.

Of the two medications that actually build bone, I chose Tymlos.

And so, I probably had to wait 6 months. I was SO careful. My mother broke her hip and died within a year. I am now getting ready to pick up another pen. The injections are daily for 18 months and once opened the product does not have to be refrigerated.

May you be free of pain and fractures and falls. Check in so I can follow the developments and your story. It can be shared so that others benefit from your experiences. Be free of discomfort today. Chris

@llwortman Linda, I never used to check these discussions because I had no idea I had osteoporosis -- my PCP dropped the ball after I was diagnosed with osteopenia in January of 2014 and I never had another Dexa scan after my fracture occurred - I called and asked if I was due for one. Now that I know I have osteoporosis I am researching as much as I can so when I see a rheumatologist I will be somewhat informed. Is that the type of doctor you saw, a rheumatologist? I was very surprised when my PCP's office said I needed to see a rheumatologist.

It seems as if none of these bone medications are without some very real faults, we have to decide which are best for each of us, and hopefully have a really great doctor to help us through it. I know of at least one person who has osteoporosis but will not take a medication because of the side-effects but I am still recovering from my "minimally displaced fracture of the trochanter of L femur" so I know the pain involved in even a minor fracture like this and do not want that to happen again if at all possible. I have even read that 20% of the people with a hip fracture die within a year due to inactivity.

I thought I was doing all the right things, exercising, and eating well but I now know that I was at a fairly high risk because three of the drugs I take - levothyroxine, prednisone, and my immunosuppressant, sirolimus -- can contribute to weak bones, plus I have lost a very considerable amount of weight. I was basically a fracture waiting to happen, "the perfect storm".

Since you got off of Prolia, did you start taking a different drug?
JK

@artscaping this is very frightening. Is it any wonder that I am furious at my PCP for letting this slide, especially knowing my high number of risk factors. My DEXA report says I am now at high risk for a fracture. 😖.

From I have read Forteo and Tymlos are the two medications that can build bone so I definitely think I need to be on one of those, along with all of the other bone strengthening strategies like exercise and diet. May I ask what led you to choose Tymlos? The more information I can gather the better off I will be, I believe. Was PT prescribed for bone strengthening exercises?
Thanks.
JK