Not. At. All!!!
Please keep going with the info and sharing. I have been ignoring my osteoporosis for the above reasons, and this information helps me (all of us) get on track and make informed decisions. I’m most grateful for your sharing
Thanks for all your research Missy. I too am feeling frustrated after reading about the meds.
And to find out that low impact weight-bearing exercise doesn't do much is so disappointing. Ughhh.
Since one in four women over 50 have osteoporosis, we have lots of company. This fact does help me keep some perspective. 90% of osteoporotic fractures are the result of falls. So fall risk management is a big part of the equation in my mind. Even if our bones are less dense and/or more brittle--if we can avoid falls, we avoid much of the fracture risk.
Online FRAX tool:
Oh, my.....I'm so sorry all of you lovely ladies are having to deal with this. @missy - what the heck? 2020 was the year things were supposed to get so much BETTER for you and Greg! Arrrgghh....
I appreciate this discussion, and all the posted info, very much. I haven't had a diagnosis of osteoporosis yet, but I think that's only because I have avoided having a scan since more than 10 years ago (which was fine at the time). I have nearly all the risk factors - especially hormone loss from a complete hysterectomy at 42 - so I think this is coming for me, if not already here. I do take vitamin d and both MK4 and MK7, but I've only taken about 1 mg once per day of the MK-4, and based on the article missy posted, that is grossly inadequate. @missy, if it's at all helpful, I use the Carlson MK4, which provides 5mg per capsule. (I had been splitting the amount to take 1/5 capsule per day.) Although it's not optimum, 9 of these per day would meet the minimum requirement the article mentioned. I believe, based on previous reading about K2, that MK4 has a short half-life - 8 hours, I think? - so optimum dosing might be three capsules with some food, three times a day.
Hormones might be something else to consider - I know that a good balance of estrogen, progesterone, and testosterone are important to bone health. My understanding is that each has their own important role to play. Of course, hormones are quite the rabbit hole, and as I've learned since my surgery, achieving "balance" is pretty much like dancing on the head of a pin.
The one thing in my life that I do consistently right, health-wise, is exercise (except for a period around 2013-2014 when other health issues interfered too much). I regularly do high-impact stuff. My recent regimen incorporates high-intensity intervals - usually as either sprints or burpees - three times a week as well as walking my dog 30-60 minutes every day that weather allows. I love doing aerobic stuff. Resistance training - well, that I hate with a fiery passion, and I've been spotty about doing it in the past. I would do it regularly for a while, then stop for a while, try to restart, falter, etc. I have reincorporated rounds of squats, lunges, and side rows with weights, and modified push-ups that I HOPE will become full push-ups if I get strong enough, every week for a few months now. Crossing my fingers that all this has helped.
Guess I need to "sack up" and get to the doctor and get tests run, rather than continuing to wave my behind in the air with my head firmly planted in the sand hiding from reality.
Thank you for sharing your research with us.
The Food and Drug Administration on Tuesday approved an osteoporosis drug that represents the first new treatment approach in nearly two decades — a strategy based on a rare gene mutation in people with bones so dense that they never break.
About 10 million people in the United States have osteoporosis. Worldwide, about 200 million people have brittle bones; one in three women, and one in five men, will suffer a fracture because of osteoporosis, often of the hip or spine. For many, the break leads to a downward spiral of disability.
Standard treatments, drugs called bisphosphonates, stop the loss of bone but do not build it. The alternatives, parathyroid hormone and a derivative, build bone but also break it down, limiting the therapeutic effect.
The new drug, romosozumab (brand name Evenity), developed by Amgen in collaboration with the Belgian drug company UCB, restores bone without breaking it down, according to the findings of two large clinical trials.
It was approved only for postmenopausal women with a high risk of fracture, and will carry a warning on its label that it may increase the risk of heart attack or stroke, the F.D.A. said.
“This is an extraordinarily important drug,” said Dr. Richard Bockman, chief of the endocrine service at the Hospital for Special Surgery in New York. “It’s a true bone-building drug that takes advantage of the underlying biology of bone.”
In large clinical trials, patients taking the drug saw increases in bone density in their spines on the order of 15 percent — a huge figure, similar to the amount of bone made in early adolescence, said Dr. Clifford J. Rosen, an osteoporosis expert at Maine Medical Center Research Institute and member of an F.D.A. panel that evaluated the data.
Merely a 6 percent increase in bone density can translate into a doubling of bone strength, Dr. Bockman said. In the trials, patients taking the drugs saw a reduction in breaks, both in the spine and “clinical” fractures — broken bones that a patient notices, rather than, say, a collapsed vertebra discovered only in X-rays.
In one study, spinal fractures occurred in 127 of 2,046 patients taking the new drug, compared with 243 of 2,047 taking alendronate, an older drug.
“It’s a tremendous advance,” said Dr. Dolores Shoback, a professor of medicine and an osteoporosis expert at the University of California, San Francisco.
But there also was a small, unexpected increase in heart attacks, strokes and sudden deaths in that study — 50 of 2,040 patients, or 2.5 percent, taking Evenity, compared with 38 of 2,014, or 1.9 percent, taking alendronate.
The effect was seen in one of the two large clinical trials, but not the other.
The F.D.A. said it was requiring the boxed warning on the drug’s label saying the drug should not be used by people who had a heart attack or stroke in the past year. Doctors should also consider whether to prescribe the drug to patients at high risk for heart attacks and strokes. Patients who have a heart attack or stroke while taking Evenity should stop taking the drug.
Side effects can include joint pain and headaches and irritation at the injection site.
The agency is requiring the company to conduct a post-marketing study of cardiovascular risks.
It is hard to know what to make of the possible risk, said Dr. Bart Clarke, a professor of medicine at the Mayo Clinic and president of the American Society for Bone and Mineral Research.
“Maybe there is something unique about those patients,” he said.
Amgen would not disclose the price at the time of approval, saying it would be disclosed next week.
Evenity will be given as a monthly injection. Parathyroid hormone is given as a daily injection, while the drugs in the other major treatment class, the bisphosphonates, are taken as pills.
The new drug has a striking back story.
In 1964, researchers began studying an unusual group of Afrikaner patients in South Africa. They were tall and heavy, but not fat. Instead, their bones were large and dense.
Their bones grew so profusely that their heads became distorted: Their jaws were large, and an overgrowth of bone in their skulls impinged upon nerves, often causing deafness or facial palsy. Many had terrible headaches. In some, the index and middle fingers fused together.
In 2001, scientists reported that all these effects resulted from a single gene mutation. The finding led researchers to understand how the body controls the building of bone.
Bones are in a state of constant flux, built up and broken down by the body. In osteoporosis, the balance is disrupted — more bone is broken down than is made.
Bone cells make a protein called sclerostin that halts the production of bone and increases its breakdown. The gene mutation in the Afrikaner patients stops the production of sclerostin, so their bodies keep building bone without brakes.
Scientists reasoned that if they could mimic the mutation by blocking sclerostin with an antibody, people with osteoporosis should build more bone.
Once bone density increased, patients could stop taking the sclerostin-blocking drug and switch to an older drug to maintain the new bone. Animal studies were successful, as were clinical trials, culminating in two large studies involving more than 10,000 postmenopausal women.
In one trial, Evenity was compared to a placebo; in the other, it was compared to a bisphosphonate. In both studies, women taking Evenity ended up with more bone and fewer fractures.
In January, Evenity was reviewed by an advisory committee to the F.D.A., which voted 18 to 1 for approval — but called for Amgen to do more research to understand the possible cardiovascular side effects.
“There is a tremendous need for this medication, and there is an amazing amount of morbidity and mortality with this disease,” said Dr. Frederick G. Kushner, a cardiologist at the Heart Clinic of Louisiana and a panel member, who voted to approve the drug.
The next step, Dr. Bockman said, is for companies to develop pills to block sclerostin so patients do not have to have monthly injections.
It may not be easy to convince patients to take the new drug.
Experts anticipate that it will be offered to patients at highest risk: those who have had a serious fracture, or who have taken bisphosphonates and parathyroid hormone, and did not respond or experienced serious side effects.
All too often, however, high-risk patients are afraid to take drugs to prevent fractures. They remember stories of the rare patients who took bisphosphonates and had an unusual fractures or deterioration of the bones in their jaws.
“They don’t remember the good — that fractures are being prevented,” Dr. Shoback said. “They remember some pivotal terrible thing that someone told them.”
Dr. Bockman has seen these patients, too, but hopes they can be convinced at least to try Evenity.
“This is a very important, great new drug,” he said. “And it is something we really need.”
Correction: April 10, 2019
An earlier version of this article misspelled the name of an older drug used to treat osteoporosis. It is alendronate, not aldendronate.
My Endocrinologist was excited about Evenity and had me read up and decide if I wanted to try it. I would essentially be a guinea pig as she had no other patients taking it, it was so new. The once monthly injections (2) are only good for one year. Then you go off and take another OP drug. In clinical trials there was significant cardio/stroke events and there were no types of patients it didn’t effect. In other words younger healthier women still had this significant risk. Therefore it carries a black box warning. Because of this I decided to go back on Prolia. I had been on it and had no bad side effects. I had taken a two year vacation from it. Maybe something better will be in the pipeline but for now I’m sticking with Prolia.
I think the same company that manufactures Prolia makes Evenity. They all carry risk and they all need to have a break from taking them though often one has to take another class of OP meds while on that break.
I know the risks are scary but they are still small relatively speaking. Of course that means nothing when we are the ones who experience said side effects. I hear you.
I am searching for the lowest risk drug that has a good efficacy. Not sure that drug exists.
What I like about Evenity is that is builds bone and not many of the OP meds do.
I might be misremembering but is Evenity the one that is banned in Europe? One of the OP meds are. Just cannot remember offhand if it is Evenity or not.
Thanks for weighing in and I am very pleased for you that Prolia is working out so well!
In postmenopausal women with osteoporosis, EVISTA (raloxifene hydrochloride) reduced the risk of fractures. EVISTA also increased BMD of the spine, hip and total body. Similarly, in postmenopausal women without osteoporosis, EVISTA preserved bone mass and increased BMD relative to calcium alone at 24 months. The effect on hip bone mass was similar to that for the spine.
Great info! I will switch to this one as soon as I finish my Carlson.
Missy, I can’t thank you enough for posting all this. I’ve done very little research since my diagnosis - many personal problems that need immediate attention - so this is all getting me back in the game.
Thank you missy for helping a sister.
And all sisters.
@lyra I think Vitamin D3 is better absorbed than D2. And it is easier on the stomach to take it in smaller doses every day vs the usually larger D2 dose that is prescribed by physicians. Just wanted to add my thoughts on that. Also make sure to take K2 with vitamin D. Very important.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3349454/
https://www.medscape.com/viewarticle/589256_4
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5613455/