I understand your reasoning about cancer vs osteoporosis. However....did you know that 1 in 2 women over 50 will have an osteoporotic fracture. Of those who have hip fractures, half will die within a year from complications related to that fracture?
The worst thing about a vertebral fracture (and that seems to be your highest risk area) is it's not just about getting shorter. The pain is tremendous and unrelenting. There's no cure for a spinal fracture. Your clothes don't fit, your internal organs are compressed, physical contact and sex are limited at best, you're more prone to falls because your balance is off. I could go on, but won't.
You would want to avoid that at all costs, especially as young as you are.
As for the jaw necrosis and subtrochanteric spontaneous fractures....let me get on my soap box. But first, let me also explain that I've worked in an internationally accredited osteoporosis center in a hospital setting for 19 years. We see approximately 4000 patients a year. We've initiated and monitor an osteoporosis rehab and education multidisciplinary class, a yoga for osteoporosis class, a bones and balance class as well as participated in several studies with NC State and Duke Universities. Our medical director is on the board of the ISCD (International Society of Clinical Densitometrists). There's nothing related to osteoporosis that we haven't seen or heard.
That said, as far as the jaw necrosis is concerned - the ONLY documented cases of it being caused by Fosamax have been in nursing home patients who were bedridden with illness and having to take IV Fosamax. NO documented cases of oral bisphosphonates causing jaw necrosis have been verified.
The subtrochanteric fractures study was done by a group in New Zealand who have made it their life's mission to rebuke these medicines that work. It was not a controlled study and only consisted of a small number of people. The one thing that did come out of it that is not publicized because it doesn't fit the narrative, is that people who were not on the osteo drugs also experienced the same type fracture.
You say you want to continue exercising and having the quality of life you have now. I understand and want that for you too. I can promise you, if you have a vertebral or hip fracture you will lose what you have. What you should be concentrating on now is how to keep that from happening.
The Prolia is a good drug. It is unique in that it not only slows down the resorption rate of old bone cells, it also speeds up the production of new ones. The Reclast (which my mother uses) is also a good drug. It slows down the resorption of old cells, thereby allowing new bone cells time to build up.
The choice and decisions about what you do are totally up to you. I'm glad that you have the opportunity to make those choices before you fractured. There are no second chances once that happens.
As to why what you're doing now isn't enough - your T-scores are at a place where they won't come up with just calcium and Vit D. Once you go past menopause, the estrogen your body made that protected your bones is gone. Unless you're on hormone therapy, you're considered high risk in that alone. The chemo does a job on the bones and the PPI interferes with the absorption of calcium. High impact exercise on low bone density is a recipe for fracturing. What happens is that the tiny honeycomb bones within the vertebra break. You don't feel this until the last one breaks - then you feel the crushing pain of a compression fracture when those vertebra slam into each other. That's what we want to avoid.
I wish you good health in whatever choice you make. I just wanted to give you something else to think about. Medicine isn't a bad thing when you need it - and you do.View Thread
Forget any supposed side effects. You're high risk and need a medication.
Did you take chemo or radiation for your breast cancer? Were you concerned about side effects enough to NOT take those treatments? My mother is also a breast cancer survivor. She was in a clinical trial back in 1992 to test the effectiveness of a new chemo cocktail. She had to sign reams of papers acknowledging the dreadful side effects. She did it without hesitation. At that time, her chances of survival (after having an emergency Saturday a.m. mastectomy) were 2 in 5 of surviving 5 years. She's now 89 and went zip lining in Costa Rica this year.
Also you need to be very very careful with your high impact exercise. You could be breaking bones in your spine and not knowing at this point. Specifically no twisting side to side of the spine, no forward bending/abs/toe touches and no jogging or anything else that pounds the spine. If you do yoga, tell your instructor to modify some moves for you to accommodate your osteoporosis. Always keep your back straight.
It's good that you take calcium and Vit D, but you need something to boost their bone building ability. That would be a medication. I'd go with the Prolia myself.
Have you had your Vit D levels checked? If not, do so. The Vit D sends the calcium to the bones where the medication can get to work increasing their density.
Congrats on being cancer free for 4 1/2 years! That's wonderful. Now concentrate on being fracture free too. A fracture will alter your life in ways you can't imagine.
When you take your calcium, spread it out. The body will only absorb 500-600 mg at a time. If you cram in all 1200 in one sitting, you're still only going to use 500. Your body will pee out the rest.
Go to the National Osteoporosis Foundation website for a lot more in depth information and a really good FAQ section. www.nof.orgView Thread
Consuming too much calcium is actually pretty difficult. You'd have to watch the clock and take calcium on schedule.
The reason for this is that your body can only absorb about 500 to 600 mg at a time. Anything more than that is excreted in your urine. So, if you ate a calcium fortified cereal with milk and a glass of calcium added OJ and maybe a piece of cheese toast for breakfast, you'd be consuming roughly 1500 mg of calcium, but actually absorbing 600 mg max. The rest you'd pee out.
You need 1200 mg each day. It's important to spread out your consumption or supplements in order to get this. You also need 1000 IU of Vit D. This sends the calcium to the bone. If your Vit D levels are low, your doctor probably will prescribe a booster dose of 50,000 IU. Usually this is taken twice a week for 12 weeks. Then you'd maintain your level with 2000 IU/week.
You have more reasons to take a medication than not.
Having a fracture (and you say you've had many) regardless of T-score, gives you a diagnosis of osteoporosis. Having a T-score in the osteopenic range does not guarantee a fracture free existence. In fact, more people with osteopenia fracture than do people with osteoporosis.
The current numbers show that of the people who sustain an osteoporotic hip fracture, half of them will die within a year from complications related to that fracture.
Also people who have had one fracture, are twice as likely to have another. You've already shown that to be true. This should be a red flag to you that you'll have another fracture. Each one lessens your independence and abilities to do the things you once did.
There are NO side effects of any medication that are worth having another fracture. The United States practices EBM (Evidence Based Medicine) and the studies and controlled drug trials bear out the validity and success of the current osteo meds for reducing your risk of fracture.
I highly doubt that a relationship, if any, between the physician and drug company has any bearing on your need for a medication. Would you think the same thing if he prescribed an antibiotic? They also can have terrible side effects - as can prednisone - yet people need those drugs to live.
I've not heard of any connection between homocystein and osteoporosis.
Remember too, that no matter what medication you decide on, you need to consume 1200 mg of calcium daily and 1000 IU of Vit D. Without this, no medication can work effectively. Also the calcium needs to be spread out through the day as your body can only absorb about 500 mg at a time.
Diagnoses and treatments aren't approved for males under the age of 50. That said, however, doesn't mean you should ignore your findings.
First - you need to be looking at Z-scores, not T-scores. Z-scores compare you to men your own age. They usually are higher than T-scores.
But...a man your age with scores like this and no family history needs to look for a primary cause of the low bone density. Usually low bone mass is secondary to something else going on.
My brother was 44 when he volunteered to test some new equipment and learned his scores were abnormally low. He went for testing and learned that two things were contributing. His heavy drinking from age 17-25 suppressed his testosterone and then the Depakote he has to take also can contribute to low bone density. None of his doctors in NY every thought of this. He went on Actonel and has responded beautifully.
Now, medications. No natural. It doesn't work. You're wasting your time and money.
At this point, Forteo wouldn't be the first choice. It's usually given to stereotypical little old ladies with multiple fractures. The frailest of the frail.
After your doctor runs some tests (hormone, Vit D would be a start) you can decide on a medication. Do you take steroids on a regular basis or anti seizure meds? Those are high risk meds for bone health.
Yes you need to be taking calcium and Vit D. You need 1000 mg of calcium each day. Your body will only absorb about 500 mg at a time, so spread it out.
You need 1000 IU of Vit D. If your lab work shows that you're deficient, your doctor will prescribe booster doses of 50,000 IU for about 12 weeks, then a maintenance dose of 1000 - 2000 IU following.
Exercise guidelines for bone strength at to be on your feet at least 4 hours a day.
With your low spine score, you should avoid bending at the waist (no toe touches, abs, etc) and no twisting of the spine. These movements can cause tiny fractures that are not felt until your vertebrae collapses.
Go to the National Osteoporosis Foundation website for a lot more information - www.nof.org. It'll give you movements to avoid as well as everything to know about medications and osteoporosis in men.View Thread
Here's the thing about websites like this. The majority of people who respond are those who had true or suspected side effects of a medication.
There are no guarantees of a side effect free result of anything you put in or on your body. The fact is, these medicines do work to lower your risk of having a fracture. I am positive that you would much rather have a nosebleed than a hip or vertebral fracture that could greatly impact your independence and way of life.
My mother has a friend who whined about the "awful" side effects of her osteo med. She had a wrist fracture pruning her camellia bushes. She had the bone set. It wouldn't heal. She had surgery. It still wasn't healing properly. She had the bone rebroken and more surgery. It's been months and she's still living with hardware protruding from her arm to hold the bones in place. Now she whines about stupidly not taking the medication.
There is nothing 100% safe and side effect free. Think peanut allergies. Peanuts are good and natural - and yet, they can kill those with allergies or sensitivities. Prednisone is a drug that literally saves lives and enables people to breathe. It has terrible side effects. Would you not take it due to the side effects if it enabled you to breathe and move? Antidepressants also make life bearable for millions of people. They too have multiple warnings on the boxes. Yet people take them in order to function and take their chances on not having a serious, or any, reaction.
If I had to take an osteoporosis medication, I'd be thankful I had the medication to take and I would run to the nearest pharmacy to get the script filled. I've seen too many people who can't hug their spouses without breaking a rib, who can't pick up their grandchildren or groceries with having a vertebral fracture and who spend months in rehab hoping for a full recovery after having a hip fracture. To me, that's not worth the chance of a side effect that may or may not be a true result of a medication.View Thread
Actonel, Boniva, Fosamax and Reclast are all bisphosphonates. Reclast is given in an annual IV injection. Boniva can also be given as a quarterly injection.
Oral bisphosphonates do cause increased gastric distress for people who already have issues with this and some who don't. By doing the Reclast (or Boniva injections) you get the benefit of the drug by eliminating the gastric issue.
The Reclast is also filed under your health, not RX, insurance as it is given in a medical setting.
With your T-scores, you certainly meet the criteria for a medication. Without it, your bones will not become stronger.
It's good that you're taking the calcium. It enables the medications to work properly. Make sure you take your calcium with meals for better absorption and no more than 600 mg at a time.
I'm assuming your Vit D 1000 IU is in addition to what's in your calcium? Do you also take a multivitamin? Without a doctor's instruction, taking more than 2000 IU is not recommended.
Also avoid any bending forward of the spine. No abs, Pilates, toe touches, crunches, etc. You'll want to pivot from the hips, not the spine. No twisting (side to side) of the spine either.
I'd advise taking some ibuprofen before the Reclast infusion to lessen any pain with the procedure. Good luck to you.View Thread
If your blood test shows your Vit D levels are low, your doctor will usually prescribe a booster dose of 50,000 IU at least once and maybe more often. Depends on your need and body's absorption of it. After that he may have you take OTC Vitamin D in 5000 IU doses until you stabilize. The recommended dosage is 1000 IU a day.
Taking more without a doctor's OK, can be harmful.
Look for the UPS symbol on your supplement to insure a quality product.View Thread
How old are you? Have you fractured any bones since age 40? What are your T-scores? Are you on hormone therapy?
Your history of steroid therapy puts you in a high risk for fractures category. You definitely need a medication. The benefit you'd get from being on one far outweighs any slight chance of a side effect from that med. More people who take these meds report NO side effects. It's the ones who notice anything different after beginning one who talk. Whether you have side effects or not, the medicines do reduce your chances of breaking a bone, and that's a good thing.
Your steroids are much more risky than any osteo med, so make your choice based on your lifestyle, any gastro issues you might have and cost. They're all effective.
My personal advice would be Reclast. The reason being that you only get it once a year and don't have to worry about refills or taking it while traveling, etc. It's also paid for out of your health insurance, not drug policy because it's given in a medical setting. My brother and mother take this with no problems.
I wouldn't do the Prolia unless other meds don't work. Our medical director, who is an osteoporosis expert as well as rheumatologist, says she won't prescribe it for her patients except as a last resort. Her preference for whatever reasons.
Boniva is good. A lot of people just prefer not to take the pill, especially if they have problems with heartburn or Reflux.
Just remember that all of them require calcium and vitamin D in order to work effectively. The calcium (1200 mg/day) should be taken in 500-600 mg increments several hours apart. If you take a supplement, take it with meals for maximum absorption. The Vit D can be taken any time. Most people like to get a calcium supplement with D.
You can also go to the National Osteoporosis Foundation website (www.nof.org) for a lot of information about the different drugs and all things osteoporosis.View Thread
I think they're denying Binosto because it's a new medication and patents are still pending. It's pretty Standard Operating Procedure nowadays for insurance companies to deny at first, then capitulate to those who challenge and challenge.
Why are you opposed to trying another medication? If you have a problem swallowing pills, I'd suggest Reclast. It works the same way as Binosto but is an annual IV injection. Because it's given in a hospital or doctor's office setting, your health insurance or Medicare B pays for it instead of RX insurance.
While I agree with your argument about being a paying customer, the reality is.....it doesn't work that way anymore. They'll tell you that you can still get the med you want, but you'll have to pay full price. Stinks, doesn't it?
Just know that in order for any osteoporosis medication to work effectively, you must consume 1200 mg of calcium every day and 1000 IU of Vitamin D. Without these, the medication doesn't have anything to work with. Calcium should be spread out during the day for maximum absorption.
Good luck with your battle. I've been there. Took me 2 years, but I prevailed. I wouldn't advise you going without medication for longer than a month.View Thread