Learn how to use Mayo Clinic Connect
Request an Appointment
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
@artscaping Thank you, Chris! I am glad to hear you will be on Prolia too – gives me someone to compare notes with! All that information on the Facebook page is mind boggling. Some people on that Facebook page even said talking to Amgen is no use, that they are not going to say anything negative to discourage users because after all, they are selling the drug and don’t want to lose sales.
My physician has started me on Prolia and I asked her if there is any alternative and she said no. I asked about going back to Actonel and she said that’s a bisphosphonate that I have been on already, and that can be taken for just five years, which I have, so I can’t go back on I do not have severe osteoporosis (just slight, at the base of my neck and top of my spine) but my doctor wants me on it just as a preventative.
Jump to this post
Good for you. I need a Prolia buddy. It is a shame that the FB folks can get a bit over the line. That is why we have moderators. They monitor and make sure you are receiving valid information and the folks who tell you about it are truthful. And we have community guidelines about the way we treat others.
I understand why they might think the manufacturer just wants to cover up a side effect to sell a product. Hopefully, when you talk to the researchers and licensed medical facilitators, you have a better chance of getting some valid information.
May you be content and medically healthy.
May I ask what are your t scores on all parts ? Since you took Actonel for 5 years, did it help? By how much? I took Actonel for 6-7 years and it helped to hold all numbers constant or improve a little except the femur neck. My ENDOs ( saw two) said Actonel doesn't work on femur neck only Prolia will. I learned that the reason it is hard to improve the density of femur neck is because it is hard for blood to go there so the drug doesn't go there as easy. I am not sure how Prolia works to bypass that difficulty.
My physician is the one who had me on Actonel and now wants me on Prolia. She hasn’t given me any numbers – just said based in my last bone density test I have slight osteoporosis at the base of my neck. She has never discussed numbers.
Previous to Prolia my physician had stopped Actonel for over a year. Then she called me last November and told me because of my age (I will be 75 in a few weeks), I could be at risk of falls and as a preventative she would like me to go on Prolia. I spoke to my pharmacist and she said both of her parents were in Prolia and were happy with it; so I figured, if a pharmacist is comfortable with her parents taking Prolia, maybe I should go on it.
I must admit though that I have had more body aches since January (I got my first injection on January 5j that I have ever been. I have fibromyalgia so I am hoping it’s just a coincidental fibromyalgia flare up. 🤷🏻♀️
What is the most successful treatment/drug for treating osteoporosis? I meet with my doctor about my recent bone scan showed it has moved into my hips, so I know we will be discussing going on pharmaceutical. I am 63 years old and went through menopause early @ 45+.
Good evening @sbauer4 and welcome, welcome, welcome, to Connect. It is such a pleasure to see your post. How did you find us? So many of us are just trying to figure out what is the best decision. It seems like there are a lot of options but it is difficult to put together a safe and secure plan for treating osteoporosis.
Basically, you have just a few choices:
1. Start with bisphosphonates….like Boniva. I was very allergic to those options. These medications do not build bone….they keep it from being attacked by an aging body.
2. Start with a medication that builds bone…..like Forteo or Tymlos. You can take these for up to 2 years. Then you must begin a save the bone med like Prolia.
3. Evenity is one of the newest osteoporosis medications. It builds bone and protects what it has built. After 18 months or two years….you will need to move to a bisphosphonate or Prolia.
4. You will need to review these with your medical clinician and learn about how your body might respond.
I just finished two years of daily injections with Tymlos. I held my own and improved my hip scores toward the osteopenia direction. There are beginning to be postings from folks on Evenity which you might like to explore. You also have to monitor your Vitamin D and Calcium intake to make sure you have the stuff you need to make bone.
Let me know how I can help from this point. I am 79 and started menopause right at 50.
May you have happiness and the causes of happiness.
I elected not to use Prolia because of its side effects. Namely, can elevate cholesterol (already taking statins) can elevate BP (already taking drugs to reduce BP), and can interfere with immune system. The later bothered me the most given Covid and likelihood of a bad flu season.
By the way, I’m on Forteo, a daily self injection for 1-2 years. Effective with fewer side effects.
Hi there……that was a great choice for your build the bone time of 1-2 years. The question becomes….what do you do when your time on Forteo is up and now you need to protect the new bone. That is when you have to choose a bisphosphonate or Prolia. Since I am very allergic to bisphosphonates, I only had one choice…Prolia. So far…no side effects.
This is why I think there just has to be some work done in the research lab so we can rely on the medications without side effects. Where is the development money being spent? Is this a gender issue in the pharmaceutical world?
May you find joy today.
Chris, If I knew what is the best for me I would not be depressed. I guess in medicine, every answer is wrong we just have to pick the best of all of the wrong answers. I came to this site to try to see what would be the best for me because I do not think doctors know better because they did not take the shots and therefore no experience with the side effects.
I think depression is a kind of genetic thing, it is in the DNA. I am the kind of person who gets depressed if I have no good answers for my problems. I have a friend who has breast cancer stage 4 but she is happy and runs around, goes to garage sales and bargins big time. She was first diagnosed 25 years ago and now the cancer is in the lungs and bones but she is not depressed. She is much younger than me. If I was her I would not be able to function at all. 0 functioning!!
I hear you. I am also indecisive and go back and forth until the moment of truth arrives. My life partner, a real sweetheart, is a heavy-duty researcher. He acts as my Sargeant to get me going. He points out "what-ifs" for me. I think together we make better decisions. Do you have someone to check in with you?
Can you believe I taught courses in decision making when I was with the college. What happened in the last 30 years? More choices?
May you be content and at ease.
As with any drug or procedure there are always side effects and/or risks. Kind of like driving your car. There are risks, but that probably doesn't keep you from driving or riding in a car. I read a lot of information on Prolia and other drugs (and I do take Prolia and other drugs) and I I've been on Prolia for 6 years now. Would I rather not be? Of course! However a great many years ago I found out through a Bone Density Test (Dexa) that I had advanced osteoporosis. I was very surprised because I'd always eaten a healthy diet, exercised, never smoked, and taken calcium and vitamin D supplements, and am a normal weight for my height and build. I decided my case was genetic as my mother also had advanced osteoporosis when first diagnosed; she had been a smoker and didn't take the supplements I had for decades, but I do think some things are in fact genetic and that no matter what you do health wise, Nature is going to rule! It certainly did with me.
I have noticed a few "side effects" while taking Prolia but I don't know if they are directly attributable to the drug itself. I have high cholesterol but developed it before starting Prolia. It is controlled by meds. Also high blood pressure that I do admit developed after begining Prolia, although my father and his mother (my grandmother) also had high blood pressure. And my father developed high cholesterol in later life. My hair has thinned on top but my mother suffered from this in older age. She never took Prolia. It would be wonderful if we could change our genetics, but we can't. It would be wonderful if all natural remedies worked for us and we didn't need other meds. However we know that route doesn't work for everyone and if it did, no one would need any drug. Alas that isn't the case.
I am now ready for cataract surgery, and although the risks are low, there can always be unfoerseen issues with the surgery. I developed cataracts long before I or anyone else ever heard of Prolia! And now of course there's Covid still plaguing us all. There's always something that will plague humankind. It's a fact of life, depressing as that is. I will undoubtedly continue with the Prolia and hope for the best, knowing that nothing's perfect. I don't believe however, some posts I've read here and elsewhere, that infer doctors are deliberately trying to poison us all and drug companies are merely trying to make money and don't care if we ever get well. I admit that drug companies are trying to make money (isn't everyone?) but if in the end they do us all in then they've ultimately lost the game.
I can understand your concern about osteoporosis drugs. I had tried a couple which I could not tolerate until the doctor gave me prolia. When I asked about side effects, he said: "not much of any." How wrong! (By the way, I have very high risk osteoporosis.) My legs ached all the time – worse when lying down and I was becoming ever more limited every day. My hair started falling out – it has receded about 2" around my face. Then, I did some investigating on my own about other people's experience and all of my symptons were connected to prolia. It contains (as do almost all of the osteoporosis drugs) the same chemotherapy drugs as used for cancer. I will now exercise, take calcium and Vitamin D but never another osteoporosis drug. I had my doctor calculate my risk of a broken bone or hip without those drugs – over the next 10 years I have a 10% chance of breaking a hip and a 25% chance of breaking any bone. I will take those odds. I walk 3 miles a day and exercise. I am NOT saying you should do as I do, but living without the pain and burden of side effects is what I decided to do.
Good luck and do a lot of research before making your decision, Kaye
A question for sewcouture: have the side effects begun to ease up since you stopped prolia?
Create an account to connect with other patients and caregivers like you.Ask questions, get answers, and give and get support.Also follow blogs from Mayo Clinic experts.
Already have an account? Sign In