1. < Osteoporosis & Bone Health

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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imallears | @imallears | Nov 22, 2019
In reply to @contentandwell "@imallears I am restricted in using things like powders you mention due to being post-transplant. Many..." + (show)
@contentandwell

@imallears I am restricted in using things like powders you mention due to being post-transplant. Many of those things are not very well regulated so are not recommended.
I also go to the gym three days a week, and do three days a week in the water. I was thinking the water may not be much help but I have been noticing that the resistance of the water really does have an impact if you are vigorous, which I am. I do a water aerobics class for an hour and then about another half hour of water jogging. My arms and legs are definitely tired when I am done. Exercise is of course recommended but overall there have not been many studies proving its efficacy, particularly walking. I was reading a book that was recommended to my sister by her doctor, "Strong Women Strong Bones" by Miriam E. Nelson. In it, she speaks of a test group of walkers vs non-walkers and there was no improvement in bone strength with the walkers which is very surprising I think. Of course walking is very good for other things too so even if it is little help for osteoporosis it does help with overall health.
I will listen to the doctor and then do some additional research. My PCP knows that I do not easily take recommendations for drugs. He is not a big advocate of many drugs but right now he is trying to get me to take BP medication. I have given in on the cholesterol medication because my endocrinologist pushed me on that and I trust him very much. I will be seeing a different endocrinologist for my osteoporosis probably and unfortunately, that appointment is not until January. My PCP does have me on vitamin D and I also take calcium that has a little vitamin D in it.

@sue225 It's so ironic that being petite is more of a risk! I was much heavier and all of that extra weight actually helps to keep bones strong. Now I am not very overweight at all so that is an added risk along with taking prednisone, and also taking omeprazole. Omeprazole can cause the calcium to not be as easily absorbed I have read.
JK

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@contentandwell

I’m surprised about the walking also and find that hard to believe . Walkers vs non walkers.....the question is was each person’s health, age and lifestyle factored in for each group and how was it tested. I tend to distrust tests and surveys for that reason. There are too many variables involved. Swimming is great and you sound really active....resistance is good for bones and health and you sound like you are really working it. The powder products we are all on are from someone we know and from a reputable company. Research has been done here by a family medical professional on the effectiveness so we are good with that. Ask your doctor about vitamin d3+K2 in pill form and see what he has to say about it.

I wouldn’t change anything you are doing but if there are certain drugs you absolutely need you must take them. You are doing other things that may counteract some of their effects. I’m small boned like my mom who was never tested for osteoporosis back in the day. She did fracture a hip because a car that was backing up when her and my dad were crossing the street bumped her.
I think that fracture would have happened to anyone.

I am the type who would resist meds also....I’m not easy lol.

FL Mary

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1 reply
JK | @contentandwell | Nov 22, 2019
In reply to @imallears "@contentandwell I’m surprised about the walking also and find that hard to believe . Walkers vs..." + (show)
@imallears

@contentandwell

I’m surprised about the walking also and find that hard to believe . Walkers vs non walkers.....the question is was each person’s health, age and lifestyle factored in for each group and how was it tested. I tend to distrust tests and surveys for that reason. There are too many variables involved. Swimming is great and you sound really active....resistance is good for bones and health and you sound like you are really working it. The powder products we are all on are from someone we know and from a reputable company. Research has been done here by a family medical professional on the effectiveness so we are good with that. Ask your doctor about vitamin d3+K2 in pill form and see what he has to say about it.

I wouldn’t change anything you are doing but if there are certain drugs you absolutely need you must take them. You are doing other things that may counteract some of their effects. I’m small boned like my mom who was never tested for osteoporosis back in the day. She did fracture a hip because a car that was backing up when her and my dad were crossing the street bumped her.
I think that fracture would have happened to anyone.

I am the type who would resist meds also....I’m not easy lol.

FL Mary

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@imallears my mother definitely had osteoporosis. She fractured a rib leaning over a meat counter to reach something at the back. I realize now too that my shrinkage must be due to osteoporosis. I’ve lost about 1.5”.

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butch24350 | @butch24350 | Nov 22, 2019
In reply to @dolan "I have no had a DEXA scan since starting Prolia 3 years ago. I will have..." + (show)
@dolan

I have no had a DEXA scan since starting Prolia 3 years ago. I will have one Dec 2017 or early 2018. But Forteo I have tremendous results. Somewhere in these blogs I had my numbers in regards to Forteo. The rep for the company was so impressed by the results she used my 'numbers' when educating others. I don't have the numbers off hand but if you look back someone asked that.

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I was on Alendronate (Fosamax),for a number of years. In September 2018, I fell while on vacation and I suffered a cracked,hip, pelvis and right femur fracture. I had an emergency IM Nailing. After 51 weeks it was discovered that the repair was a delayed union... due to the wrong size of nail used. I had the replacement nailing in August 2019. During PT I was experiencing pain in my left femur. During my next orthopedic appointment a stress fracture was discovered in the left leg. I had IM Nailing on the left leg in November 2019. I also broke my fifth Metatarsal in 2016. Which resulted in surgery and pin placed.I have never been diagnosed with osteoporosis. I was diagnosed with osteopenia about 10 years ago....around age 55.I had another bone density in July,2019, my condition was still deemed osteopenia.
So, I was taken off Alendronate, as the orthopedic doctor felt I had been on it too long.My doctor wants me to go to an endocrinologist and start on Prolia, Tymlos or Forteo. I’m not crazy about daily shots... I’m taking Lovenox for blood thinner after the latest surgery ( and I took it after the August surgery too)..... which I’m not crazy about; but of course I am doing it.I am also concerned about the side effects and taking a hormone. I have never had any type of hormone therapy. I am overwhelmed by finding an endocrinologist, medication costs and the side effects... especially cancer. Any help on these decisions wound be appreciated.
One question I have Is did you stop the Forteo because of the length of time you used it?

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2 replies
cherriann | @cherriann | Nov 22, 2019
In reply to @contentandwell "@cherriann this is such a difficult and confusing situation. I do know people who have taken..." + (show)
@contentandwell

@cherriann this is such a difficult and confusing situation. I do know people who have taken these drugs and had very good success with them, but there are the opposite also.
I am at the beginning of this journey, recently diagnosed with osteoporosis and waiting for an appointment with an endocrinologist. If a person does not use these drugs what are the other options besides taking calcium and vitamins D, and exercises? I start a short series of PT sessions next week to learn the best exercises that help with this.
JK

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There isn't a one-size for everyone way to treat osteoporosis and that is why I so strongly suggest doing your own research and decide what options you're comfortable with trying. Be your own advocate, research, and don't rely completely on physicians to make these decisions for you. Which drug, or whether you take an osteoporosis medication at all differs from one person to the next and their situation. From my own experience and research, I have chosen not to. I previously took Fosamax and Fosamax D. The digestive side effects appeared soon after starting treatment. Later I experienced severe bone cramping in my legs and groin. Coupled with these side-effects, I was hearing concerning media reports and also found numerous studies while doing my own research that told of troubling/dangerous issues others were having with Fosamax and other osteoporosis drugs. I decided to completely go off Fosamax and it has been many years now since I have taken osteoporosis drugs. My doctors continue to want to prescribe them for me and I continually reject them! All side effects disappeared after going off the drugs and in these passing years my over-all health greatly improved after discontinuing the drugs. I try to eat healthy, I exercise, walk the treadmill every day, I take a probiotic, D3, and eat yogurt daily. If and when a safe and proven drug without serious, life-altering side-effects comes on the market for osteoporosis, I would certainly consider taking it. There are those who report no issues from taking osteoporosis drugs and have experienced improvement, so again, all cases cannot be lumped into either bad or good. I truly understand it can be confusing. I remember when I was first diagnosed with osteoporosis being scared and worried how this was going to effect my life and doing the things I enjoyed. I do live a more cautious life than I use to, but still do many, many things I have always did....just do them more carefully, thoughtfully and sometimes with restraint.

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cireland | @cireland | Nov 23, 2019
In reply to @butch24350 "I was on Alendronate (Fosamax),for a number of years. In September 2018, I fell while on..." + (show)
@butch24350

I was on Alendronate (Fosamax),for a number of years. In September 2018, I fell while on vacation and I suffered a cracked,hip, pelvis and right femur fracture. I had an emergency IM Nailing. After 51 weeks it was discovered that the repair was a delayed union... due to the wrong size of nail used. I had the replacement nailing in August 2019. During PT I was experiencing pain in my left femur. During my next orthopedic appointment a stress fracture was discovered in the left leg. I had IM Nailing on the left leg in November 2019. I also broke my fifth Metatarsal in 2016. Which resulted in surgery and pin placed.I have never been diagnosed with osteoporosis. I was diagnosed with osteopenia about 10 years ago....around age 55.I had another bone density in July,2019, my condition was still deemed osteopenia.
So, I was taken off Alendronate, as the orthopedic doctor felt I had been on it too long.My doctor wants me to go to an endocrinologist and start on Prolia, Tymlos or Forteo. I’m not crazy about daily shots... I’m taking Lovenox for blood thinner after the latest surgery ( and I took it after the August surgery too)..... which I’m not crazy about; but of course I am doing it.I am also concerned about the side effects and taking a hormone. I have never had any type of hormone therapy. I am overwhelmed by finding an endocrinologist, medication costs and the side effects... especially cancer. Any help on these decisions wound be appreciated.
One question I have Is did you stop the Forteo because of the length of time you used it?

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Hi -- I don't know where you live, but if you're in the Northeast, I highly recommend UCONN's Osteoporsis Center in Farmington CT. If you are not in the Northeast, you might want to look for a similar center in your area. Good luck.

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1 reply
butch24350 | @butch24350 | Nov 23, 2019
In reply to @cireland "Hi -- I don't know where you live, but if you're in the Northeast, I highly..." + (show)
@cireland

Hi -- I don't know where you live, but if you're in the Northeast, I highly recommend UCONN's Osteoporsis Center in Farmington CT. If you are not in the Northeast, you might want to look for a similar center in your area. Good luck.

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Thank you!

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JK | @contentandwell | Nov 24, 2019
In reply to @butch24350 "I was on Alendronate (Fosamax),for a number of years. In September 2018, I fell while on..." + (show)
@butch24350

I was on Alendronate (Fosamax),for a number of years. In September 2018, I fell while on vacation and I suffered a cracked,hip, pelvis and right femur fracture. I had an emergency IM Nailing. After 51 weeks it was discovered that the repair was a delayed union... due to the wrong size of nail used. I had the replacement nailing in August 2019. During PT I was experiencing pain in my left femur. During my next orthopedic appointment a stress fracture was discovered in the left leg. I had IM Nailing on the left leg in November 2019. I also broke my fifth Metatarsal in 2016. Which resulted in surgery and pin placed.I have never been diagnosed with osteoporosis. I was diagnosed with osteopenia about 10 years ago....around age 55.I had another bone density in July,2019, my condition was still deemed osteopenia.
So, I was taken off Alendronate, as the orthopedic doctor felt I had been on it too long.My doctor wants me to go to an endocrinologist and start on Prolia, Tymlos or Forteo. I’m not crazy about daily shots... I’m taking Lovenox for blood thinner after the latest surgery ( and I took it after the August surgery too)..... which I’m not crazy about; but of course I am doing it.I am also concerned about the side effects and taking a hormone. I have never had any type of hormone therapy. I am overwhelmed by finding an endocrinologist, medication costs and the side effects... especially cancer. Any help on these decisions wound be appreciated.
One question I have Is did you stop the Forteo because of the length of time you used it?

Jump to this post

@butch24350 You have been through a lot, for sure. I am surprised that you have so many problems but just have osteopenia, not yet osteoporosis.
I am just beginning this miserable journey and have an appointment with an endocrinologist. My appointment is not until January so I haven't read as much as I intend to about the various drugs prescribed for osteoporosis. I thought the shots were done less frequently, either weekly or monthly, and of course Reclast is yearly.

@cherriann I do know of people who have not had any problems and have been helped by these drugs so I think it is worth a try once the right drug is chosen. As the drug commercials on TV always say after telling all of the possible side-effects, "your physician has decided that the benefits of the drug outweigh the possible side-effects". or something along those lines. I always try to remember too that generally people looking for answers are the people who have had problems. If everything is fine you have no reason to look for answers.

I will do my own research. Along with that and choosing a doctor in whom I have confidence I will proceed cautiously.
I had a "minimally displaced fracture of the greater trochanter of my L femur" in July. That is a somewhat minor fracture but the pain was substantial and the effect on my life was severe. I still have some pain that I think is from it although it could be bursitis pain. Obviously the last thing I want is to have another fracture, I am living in fear of winter with its icy parking lots.
JK

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1 reply
mhalpin53 | @mhalpin53 | Jan 17, 2020

I was on alendronate (generic Fosamax) for over five years and it was no longer effective. I switched to Prolia a year ago and just got the results of my latest dexascan. My T scores range from -1.8 to -2.8 and my overall bone density has improved 4%. I have had no side effects.

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1 reply
Mentor
Chris, Volunteer Mentor | @auntieoakley | Jan 17, 2020
In reply to @mhalpin53 "I was on alendronate (generic Fosamax) for over five years and it was no longer effective...." + (show)
@mhalpin53

I was on alendronate (generic Fosamax) for over five years and it was no longer effective. I switched to Prolia a year ago and just got the results of my latest dexascan. My T scores range from -1.8 to -2.8 and my overall bone density has improved 4%. I have had no side effects.

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Yay! Success stories are important too!

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1 reply
JK | @contentandwell | Jan 17, 2020
In reply to @auntieoakley "Yay! Success stories are important too!" + (show)
@auntieoakley

Yay! Success stories are important too!

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@mhalpin53 @auntieoakley Success stories are very important. Often the only people who come to these sites are those who have had problems so that sort of skews the facts and there really are more success stories than non-success stories. I have been told by two endocrinologists that the problems only occur in about 1 out of every 10,000 so the chance of me having a problem from one of the medications is far less than the chance of my having a problem from a fracture. I have not yet decided which medication I will go for. I think it has to be an injection/infusion type because the oral ones are rough on your esophagus and I have Barrett's Esophagus so that could be a problem.
JK

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