Mayo Clinic Connect
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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@feather and @cherriann
I agree with both of you 100%. Women are getting smarter about this whole subject and not blindly accepting what healthcare professionals tell us all the time. There has to be a more holistic approach from providers and it behoves us to be more informed about everything…both genders included.
I agree that it is very important to do your own research. My experience has been that most of the doctors I've seen for the many years I've had osteoporosis strongly push osteoporosis drugs. With all the new information coming out about side-effects they cause, don't depend on your physician to alert you to them. Also, I suggest to read reviews from those that take the drugs you are considering to find out first-hand what others are experiencing positive or bad.
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A good source of information is Pub Med….free to set up an account + “alerts,” so you will be aware of the most recent articles (from medical journals) on the particular subjects of interest to you.
Alerts can be set up for specific meds, “fracture prevention,” “osteoporosis,” etc.
View articles in order by date – most recent first – and customize settings for arrival in your e-mail box as often as you want them, e.g., weekly.
Yes, it’s easier to rely on your doctors for information, but if you put the effort into reading the latest peer-reviewed studies – at least, the abstracts or summaries – you are less likely to regret the choices you make going forward.
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That's a great source of info…just did a brief tutorial.
Thanks! So much better than Googling.
You’re welcome….glad you are using it!
…much better than Googling because you’re getting medical journal articles, the source of your doctors’ information, instead of less reliable sources.
Even if full text is not available on Pub Med, there’s an abstract + full text can be requested through your local public library – which probably has statewide interloan access – or a medical library. There’s also an easy way to pay for full text through Pub Med when it’s not available.
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@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.
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I am 65, female, and about to receive my fourth Prolia injection. I am afraid of drugs and have a track record of reacting to meds. I know there are many papers in medical journals outlining negative effects of Prolia and other osteoporosis drugs. However unlike the doctors who specialize in this area who have four years of medical school plus another 4-6 years of residency and some who continue on doing research in this area, how can we ever really know what the doctors know? My own endocrinologist heads up the osteoporosis department in a major hospital in a large city. She has led the research in studying astronauts and weightlessness in space and bone loss. These doctors see the whole picture, have read many more papers than we ever will, have seen so many patients over many years. I do feel that my endocrinologist has my best interests at heart. And as someone who is scared of drugs, I made a decision to trust my doctor who seems quite dedicated to her patients.
Exercise, calcium, vit d was never going to "cure" my osteoporosis. My bone density has increased on Prolia and I worry a little less about fracturing. Science is always evolving and five years from now there may be something new to try.
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@sue225. I too avoid drugs whenever possible but recently it has become less and less possible to do so. Thank you for your post, it is somewhat reassuring if my endo does suggest prolia. When you started on prolia how bad was your bone density? I know there only a couple of drugs that increase density, most help to maintain it.
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This is indeed a complex and confusing situation but everyone has to decide for themselves and trust their instinct. What I am doing currently for my osteoporosis is taking a daily formula of vitamin d3+K2 and a bone and joint formula …both powders dissolved in water . I am avoiding as many foods with oxalates as I can since I recently found out that they tend to inhibit the absorption of minerals like calcium. I have stopped eating spinach and some other greens which I had been eating almost daily for years for eye health.
Diet and lifestyle are so important for bone health. I do have 3 gym classes a week and have upped my walking which is a great weight bearing exercise. Since I don’t smoke or have any organic medical problems ,have great BP and weight and no fractures, I have decided I am a good candidate for not taking drugs. I did take Boniva and Actonel about 15 years ago with minimal improvement. This is purely a personal decision and based on my holistic approach to good health.
It’s been stated before but do your research, asses your overall health and lifestyle and listen to what your doctor has to say and then make a decision. My point is not to blindly trust what any doctor says before you do make a decision. If anyone decides to continue drugs , I would also urge them to include healthy activities and watch their food intake because you can’t always rely solely on drugs.
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I dont have my report in front of me but the numbers were over -3 for both the hip and spine and there had been a steady decline for several years with a big decline over an 18 month period. I also am petite and small-boned. In addition, my celiac disease was mis-diagnosed for many years. I was diagnosed as a celiac in my early 20's and probably had celiac disease from day one. So, there were many years of malabsorption of nutrients, (my ability to achieve a high peak bone density was compromised).
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@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.
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.
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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”.
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.
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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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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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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