Prolia treatment for osteoporosis: What is your experience?

Posted by Veruska @veriska, Mar 7, 2017

I received the results from my bone test and they have recommended I start Prolia. I have read the side effects and I am concerned. Has anyone use this drug and if so what side effects have you experienced. Thank you

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@sue225

You can go on Prolia to maintain the bone density achieved while on Tymlos.

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@sue225, Thanks for responding. That may be an option at that time. Right now it has way too many side-effects for me.
Be happy and free of pain.

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@contentandwell

@lioness. Thanks, Linda. Up until this injury I was doing all of that. I was using 10 pound weights and about to increase that. I did start taking calcium with vitamin D too. I have been doing a lot of research and I have read that although swimming and walking are great for overall conditioning and cardio they don’t help bone strength much at all!

At this point I think Tymlos may be the best drug for me but I of course will be discussing that with the doctor when I get to see her which probably won’t be until December. I asked to be on the waiting list, and I will be, but the person I spoke to told me there’s a very long waiting list. I am sure I could see someone sooner if I chose to go to a doctor up here but this whole thing has been the last straw in my losing confidence in most of the doctors up here, so I will see a rheumatologist at MGH. It is very upsetting to think that my PCP, who is highly regarded by other doctors, let this fall through the cracks.

I do think I will look into the bone broth you mentioned. I am sure that it can’t be something that my transplant team would say I should not use but I will, as always, check with them first. Some of the restrictions are very surprising.
JK

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@cottendandwell I understand as long as you do your research and I know you are . We all have to do whats best for us as we are all made up differently. I is a difficult path anymore so good luck know I care and will help in anyway I can

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@contentandwell

@artscaping Thank you so much, Chris. This is great information. I too will be playing catch-up. As I have indicated in a number of posts, I am absolutely fuming at my PCP that he dropped this ball. It sounds as if Tymlos may be the best option for me too although I hate the idea of giving myself injections. UGH. Those are the only two that build bone, right? My DEXA report says I am at high risk for a fracture.
That is a good question, what to do when the 18 months is up. I will do more research on Tymlos. As I commented above, I called the rheumatologist I want to see today and she is now scheduling in December. I asked to be put on the waitlist and was told that I would be, but that it is a very long waitlist. 🙁 Have you asked your doctor what will happen after the 18 months? Are you seeing just your PCP for this or are you seeing a specialist too?
Where you mention daily exercises you mention walking. Walking is great for cardio and general conditioning but I just read that in a study done with a test group that did not walk, and a group that did walk daily, there was no difference in bone strength much to the surprise of the researchers. I also saw somewhere that high impact exercises are good, but if your bones are weak should you really be doing high impact? I am thinking I will do some Zumba, that's pretty good exercise, burns a lot of calories and I think will be good for bone strengthening. I did it a long time ago, before having knee replacements, and a lot of women I know at my health club do it. I enjoy the pool and that too is good for some things but I doubt it does much for bones and right now that is a huge consideration for me.
I bought the ebook, "Strong Women, Strong Bones" by Miriam Nelson. I haven't read far into it yet but I think it will be good. My sister has osteopenia and her doctor recommended it. The same author has also written "Strong Women Stay Young" which too delves into bone-building but is not as specialized as the former.

@llwortman I can certainly understand your reluctance to take the drugs you mention. You did not mention Tymlos or Forteo. I believe those are different than the drugs you mention. Would they possibly be an option if you got to the point that Chris and I are at, needing to rebuild bone?
JK

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There is Forteo, Tymlos and one other according to my endocrinologist but unfortunately, I can’t remember the name of it....perhaps someone here can. I fractured my foot last winter and things are still not good (fractures are healed now-I am on Tymlos now-but they discovered some pretty extensive arthritis also). I wish you the best in finding results that work well for you so fractures do not enter your life.....they are challenging.

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@migizii

There is Forteo, Tymlos and one other according to my endocrinologist but unfortunately, I can’t remember the name of it....perhaps someone here can. I fractured my foot last winter and things are still not good (fractures are healed now-I am on Tymlos now-but they discovered some pretty extensive arthritis also). I wish you the best in finding results that work well for you so fractures do not enter your life.....they are challenging.

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Thanks @migizii Discovering that I have severe osteoporosis was actually due to a trochanteric femur fracture. I called my PCP and asked if I was due for a bone density scan. Turned out I was very overdue since my last scan was in 01.2014 and at that point I had osteopenia. I now know that I should have been getting scanned at least every two years after that. For me this is especially true since I have three medications that can negatively affect bones, plus I lost a lot of weight.

You bring something up that I wondered about. If you have osteoporosis does it take longer to heal? I was told this injury usually takes about three months but I am past two months and still in a lot of pain. I wonder if I will ever be back to normal.

Also, my PCP told me to see a rheumatologist but apparently some people see endocrinologists. Which is better for osteoporosis? I already have an endocrinologist whom I like a lot and is very highly regarded. I did check his clinical interests and there was no mention of osteoporosis.

I sure wish I had known I should have been having scans every two years, I would have taken the initiative to make sure that happened, way back then, not after fracturing something.
JK

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@contentandwell

Thanks @migizii Discovering that I have severe osteoporosis was actually due to a trochanteric femur fracture. I called my PCP and asked if I was due for a bone density scan. Turned out I was very overdue since my last scan was in 01.2014 and at that point I had osteopenia. I now know that I should have been getting scanned at least every two years after that. For me this is especially true since I have three medications that can negatively affect bones, plus I lost a lot of weight.

You bring something up that I wondered about. If you have osteoporosis does it take longer to heal? I was told this injury usually takes about three months but I am past two months and still in a lot of pain. I wonder if I will ever be back to normal.

Also, my PCP told me to see a rheumatologist but apparently some people see endocrinologists. Which is better for osteoporosis? I already have an endocrinologist whom I like a lot and is very highly regarded. I did check his clinical interests and there was no mention of osteoporosis.

I sure wish I had known I should have been having scans every two years, I would have taken the initiative to make sure that happened, way back then, not after fracturing something.
JK

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@migizil, @contentandwell, Here is a link that classifies and compares Forteo and Tymlos. I haven't found a third medication in either of these two categories of bone-building medications. Hopefully, you can survive all the ads. Do those Ad blockers really work?
https://www.yourhealthremedy.com/health-tips/abaloparatide-vs-teriparatide/
Have a lovely, peaceful evening. Chris

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@artscaping

@migizil, @contentandwell, Here is a link that classifies and compares Forteo and Tymlos. I haven't found a third medication in either of these two categories of bone-building medications. Hopefully, you can survive all the ads. Do those Ad blockers really work?
https://www.yourhealthremedy.com/health-tips/abaloparatide-vs-teriparatide/
Have a lovely, peaceful evening. Chris

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@artscaping Thanks again, Chris.

Regarding ad blockers, I can't get rid of them, what a nuisance. I also have little things that come up in the lower right side of the screen when I am on my desktop, that tell me every time a new email comes through. I have tried everything to get rid of those. No success.
JK

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@contentandwell

Thanks @migizii Discovering that I have severe osteoporosis was actually due to a trochanteric femur fracture. I called my PCP and asked if I was due for a bone density scan. Turned out I was very overdue since my last scan was in 01.2014 and at that point I had osteopenia. I now know that I should have been getting scanned at least every two years after that. For me this is especially true since I have three medications that can negatively affect bones, plus I lost a lot of weight.

You bring something up that I wondered about. If you have osteoporosis does it take longer to heal? I was told this injury usually takes about three months but I am past two months and still in a lot of pain. I wonder if I will ever be back to normal.

Also, my PCP told me to see a rheumatologist but apparently some people see endocrinologists. Which is better for osteoporosis? I already have an endocrinologist whom I like a lot and is very highly regarded. I did check his clinical interests and there was no mention of osteoporosis.

I sure wish I had known I should have been having scans every two years, I would have taken the initiative to make sure that happened, way back then, not after fracturing something.
JK

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@migizil, @contentandwell,
So...on webmd I found the following: An endocrinologist is listed as dealing with Bone metabolism and osteoporosis. Heres the link. https://www.webmd.com/diabetes/what-is-endocrinologist#. That's it for tonight ladies. Chris

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@contentandwell

Thanks @migizii Discovering that I have severe osteoporosis was actually due to a trochanteric femur fracture. I called my PCP and asked if I was due for a bone density scan. Turned out I was very overdue since my last scan was in 01.2014 and at that point I had osteopenia. I now know that I should have been getting scanned at least every two years after that. For me this is especially true since I have three medications that can negatively affect bones, plus I lost a lot of weight.

You bring something up that I wondered about. If you have osteoporosis does it take longer to heal? I was told this injury usually takes about three months but I am past two months and still in a lot of pain. I wonder if I will ever be back to normal.

Also, my PCP told me to see a rheumatologist but apparently some people see endocrinologists. Which is better for osteoporosis? I already have an endocrinologist whom I like a lot and is very highly regarded. I did check his clinical interests and there was no mention of osteoporosis.

I sure wish I had known I should have been having scans every two years, I would have taken the initiative to make sure that happened, way back then, not after fracturing something.
JK

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It took me 7 months to heal the stress fractures (3) that happened when I fell and I am experiencing challenges again three months later, which maybe arthritis or a new fracture.......the plan is to wait two weeks and see if my foot feels better from rest and follow up with an X-ray if not better. The orthopedic surgeon I saw (with a referral from my podiatrist and endocrinologist) said I was the 2-5% that take that long to heal. My endocrinologist said it can generally take longer when a person has osteoporosis, but not as long as it took me. I’ve been primarily working with a podiatrist, but will need to see an endocrinologist or rheumatologist for the long term.. I will be checking with my endocrinologist for guidance. I don’t know if this helps or is confusing, but I’m glad you’re finding your way through this now. Good luck and take care!

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So sorry. This is unbelievable. We must all share our stories. An antidote must be found here in a country where medical resesrch is a leader. Thank you for sharing your story. We are not alone with this awful drug. All the Best.

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Thanks, Chris, you for this info....seeing Boston endocrinologist soon and will have a lot of questions before starting any meds + get 2nd opinion + read recent info.
I have spinal osteoporosis + scoliosis, so will have lots of questions about exercise too. Are your “new” bones denser and less brittle or just denser? Do you have osteoporosis in your spine? Thanks, again. Lisa

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