I am 56. I was diagnosed with osteoporosis at 48. I tried the supplements etc for several years and my dexa scans only got worse. I am in the red or severe osteo category. I eat very healthy. No processed food, sodas, very little caffeine, vegetarian diet. Nothing that hurts bone health. I am extremely active. I cycle 150-200 miles/week, hike, run and clean houses and help my husband with construction work some. I am usually active until late evening. I decided to go on prolia from the recommendation of my gyn. I wasn't told any "bad" things about it. I looked up side effects and saw minimal and decided to try. I had no side effects and I had been on it 4.5 ish years. Since then my scores have gone up some and I was due for another dexa next year. My gyn left, so NP at my PCP took over scripts, then he left and PCP didn't want to manage the osteo. I had to find another PCP who would write the script as I was needing a refill. Her office fought with my insurance (to no avail) for 6 weeks to get them to preapprove. I finally ended up paying out of pocket. In the interim of the 6 weeks my back started hurting. I usually ignore things which I did for 3 weeks. The pain kept getting worse. Dr thought pulled muscles. It continued to worsen and I knew something was wrong. I started reading and found out what happens if you are late or come off Prolia. Apparently regular doctors don't know this and I was never told from my gyn. The pain got debilitating before I could get some answers . Finally , got xrays and MRI (had to pay out of pocket) and to a spine dr. All the lumbar vertebrae have compression fractures and an old one at T11 and new one at T8 which is 80% compressed. The spine dr has referred me to have kyphoplasty and I am waiting on the appt. He also has referred me to endocrinologist to manage the osteo once this is done. This has been an absolute horrible experience. I am unable to work (clean homes), I went from extremely active to barely going. The pain has been horrendous, I've had nausea, my bp is elevated (I have not been able to donate blood before because it usually is very low), my HR is elevated, for some reason i get out of breathe easily, very little sleep and all combined has got me depressed. I try to go for a walk each day . The pt said was good for me and it also helps my mind. I am hoping I will get past this soon and I can be back to doing the things I love to do. Anyone with suggestions or good experiences please let me know. Also, anyone else close to my age out there?
new to this site: I am 56. I was... - Osteoporosis Support
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Just know that you are not alone! I was on Prolia for a long time and then told by a doctor that it was hurting my eyes. This information was WRONG! The doctor should have said that my eye condition was associated with osteoporosis, not Prolia. But I delayed a Prolia shot and several vertebrae broke and the pain was beyond belief. And while the pain is less now, I still live with pain and deformity. So be aware that if you ever go ON Prolia there may not be a safe off ramp!
Are you now on any bone strengthening medication?
I assume that you are probably back to prolia as it is the easiest to tolerate.
I went back on prolia after the compression Fractures. Now because I'm high risk new dr put me on tymlos. I had one month prior taken the prolia so technically until may I have both meds. I am really worried about not continuing the prolia or at least taking a bisphos to relay off. I am so worried about all the side effects from these meds but I'm scared to not be on something too.
Hello-sorry to hear about your experience. I have read a lot about Prolia and its risks and have never heard of spontaneous compression fractures occurring so soon after stopping the drug; usually the studies have shown these occurring after about 6 months of not taking it. Not to say that your fractures were not related to Prolia. I hope you pursue reimbursement for the drug and tests from your insurance!
I was diagnosed with osteoporosis when I was 47; I am now 68. I took oral meds for a years and then I self injected Forteo for 2 years. I have been on Prolia since almost 8 years. I have not had any side effects. My only complaint about it is that in the US it is not approved to be self injected at home as it is in other countries.
I also have osteoporosis, but have opted, so far, not to go on meds for it. I am so sorry to hear that you have had such painful experiences and outcome. I wish you the very best and hope you can find a manageable solution.
I'm very weary to take meds for this condition. Is your condition severe or mild? How old are you if you don't mind me asking? And how long have you known you have had this?
I am 56. Severe osteoporosis so I am afraid to not be on something but the meds worry me.
I was told by a doctor that you need a shot of Reclast after you stop Prolia. Maybe ask your doctor if it’s an option for you
I am also really sorry to hear you are going through so much - I have osteoporosis too at 57 and like you I am active and have always tried to eat mindfully. I have not tried medicine and hope not to but since it’s hard to know what I did right and wrong it’s difficult to make a plan. It helps to share worries and frustrations and I wish I could help you feel better quickly
So sorry to hear this. I'm recently diagnosed at 56. Always exercised and been active, and ate healthy so this has been hard for me to believe. I'm waiting to meet with an endocrinologist before starting drugs. Good to know about Prolia. 
Hello, Have you already decided to take mediation or is it an option you are considering ? Just curious as to how people decide since some doctors seem to advise it quickly. Endocrinologists are overbooked here and finding an open minded one is challenging
I haven't yet decided. An echolight scan will be available to me about 6 months from now. I may wait for that because I have heard that dexa scan results have less information about bone strength and can be more subject to error depending on technician skill and if patient is small and thin. I hope things don't get worse while I decide about meds but before I put chemicals in my body (I typically have terrible reactions to drugs), I want to try supplements and increase my weight training.
Just my story but I tried exercises and supplements and I just got worse. I absolutely hate meds. Even nausea meds make me sick lol. I just ran out of options. I went on prolia and now because of all the compression fractures I just started Tymlos. I know a lot of people are against that, including some of my dear friends, but I really don't have any other choice. I am trying so hard to keep from hip or pelvic fracture or more compression fractures. Everyone has to make their own decision and know you are doing the best you can.
I'm sorry to hear you got worse. My insurance covers a scan only every 24 months. I'm going to get one in a year and save to pay out of pocket because 2 years is too long for me to wait once you're diagnosed with it.
All I heard about Prolia is you can't ever get off it.
I remember my mom a long time ago took fosamax, briefly worried about the possible effects but never talked about it that I was aware of. By contrast I think about it so much and feel empowered at times but also a sense of dread . It’s not that medicine is so terrible but i hâte thinking we can’t control this by being educated and dedicated to the right nutrition and exercise. Sorry just venting.
I'm so sorry you are in the middle of bad doctoring, no communications, horrible fractures, waiting on surgery, stressed, in pain, and likely not sleeping well. I have 10 spinal compression fractures, and 8 thoracic/lumbar disc moderately rupturing. I understand your pain and frustration. The kypho will help, in time. Pain improves 50% in a few days, then it takes a while to heal, and getting strong again takes time. I'm 62, sort of close to your age...I've been doing this for 15 months, cascading from T6 down to L3. Prolia is okay for some, but so many have been hurt by it, and the doctors have not communicated nor told them how to rebound, or that it's a risk at all. I told my doc no way, I cannot risk my legs, many have femor fractures from Prolia. I've lost 3 inches in height, this is after all the surgeries to keep me upright. I would recommend you eat more protein, add in protein shakes between meals. I find it hard to eat much at a time, and since the first fracture, I have zero appetite, would rather not eat. If you are going to limit your diet to plants, then you need nearly 3x as much plant protein as good ole beef. Add in amino acids, bioactive Vit B's as well as Vit D3, Vit K2, magnesium, boron, and if your labs show a need for calcium, a plant based one is best. Don't assume your food gives you all the vitamins/minerals needed. We eat whole foods only, no sugars, no starches, no grains, no seed oils, no processed foods...but I still take supplements, as I have no idea the true quality aside from what the ranchers, farmers advertise. Some labs will help you assess what supplements you need.
Please go checkout, Optimal Bone Health on Youtube, Dr Doug Lucas, I have learned so much following him and taking a deep dive into my diagnosis, you are young like me and most conventional meds have time limits on how long you can take them and the consequence if you get off them. Please please do your research before you start any meds. I was diagnosised in September at the age of 54 with Severe Spinal OP with a -3.4 in my L4, I am fixing my nutrition and my gut health, going to Osteostrong and taking my supplements. Praying this can keep me off the Prolia,,,,, watch Dr Lucas video about prolia, its pretty scary when you think about the long term, the thing the drs dont tell you about. Best of luck!!!
I am so sorry to hear this. I've also had vertebral compression fractures and know how painful it is. The osteoporosis summit is on now with Margie Bissinger at morebonehealth.byhealthmean.... Dr. Mccormick and Dr. Millman have some very informative talks on medications and finding the root causes of osteoporosis. Dr. Mccormick was diagnosed in his 40's and had around 20 fractures. He wrote the book Great Bones and does virtual consultations. It's so important to find and address the root causes along with considering medications.
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