Short story. No bone created by these drugs will ever be as strong as what you were born with especially with the bio phosphates. They were introduced with a lot of heraldry and then the side effects showed up later making patients have to convince their docs of their experiences. Hard to fight the money machine once it’s on a roll.
Short story two: The newer injections may or may not be better. Definitely expensive so insurance may not want to go there. They DO have a limit on how long you can use them at any rate. And yes they’ve got some big side effects including jaw and muscle.
Three:
Low bone density is only a test. This is only a test. Which is why some recommend that you actually break a bone first before putting you on a drug unless you have several risk factors over than just low bone density. Don’t blindly sign up for these drugs without knowing all the risks.
Someone above said they wouldn’t be on the market if they were dangerous or ineffective…not true. I’ve watched dozens of drugs over the years pulled off market too late for unsuspecting consumers.
It is possible for a dangerous drug to remain on the market if there is a situation for which it is the best available option, but that does not mean that it should be first choice option (rather than a last resort option) for many patients.
Indeed, any drug that is prescription-only would carry the presumption that it is too dangerous for non-physicians to self-treat with.
My mom just got a Reclast IV. Her rheumatologist Rx it as her latest scan showed osteopenia.
I have not heard any problems with this drug but I don’t seem to know as much as some of you here. She is on long term low dose steroids so there was even more reason to do something.
Reclast is a brand name for zoledronic acid or zoledronate, which is in the bisphosphonate family of drugs that people are concerned about with respect to undesired effects like osteonecrosis of the jaw or other bone issues.
Doctor here. Here’s a rundown of the issues with the various meds.
- Forteo: this is an analog of parathyroid hormone. It’s the ONLY type of drug that builds NEW bone. The others only decrease breakdown of old bone, which shifts the balance from bone loss over time (which is normal) to stability or a slight increase in bone density. Problems with it include a theoretical risk of osteosarcoma, which was seen in rats that took high doses of it from adolescence to old age. This hasn’t been seen in humans, but treatment duration has been limited to 2 years as a precaution. This leads us to the second big issue with Forteo (not including the fact that it is a daily injection which is very expensive): if you don’t chase it with a course of a different drug, either Prolia or Fosamax, you lose the benefit.
- Fosamax and others, e.g. Actonel, Zometa/Reclast: these drugs are phosphate groups that can be incorporated into calcium phosphate, the crystal that gives bone its hadness, which then becomes part of the bone. It is a little different from the phosphate group that is normally used and it’s hard for the body to break down bone that includes the drug, shifting the balance from net bone loss to stability, as noted above. Problems with this class of drug include a risk of osteonecrosis of the jaw — this is very painful as noted. It’s more likely to occur in cancer patients treated with high doses of the drug or in those treated for many years. Typically nowadays the duration of treatment is 5 years, followed by a “drug holiday.” These drugs can also make heartburn worse. Spiral hip fractures can occur but are exceedingly rare and appear to be due to taking the drug for many years without a break, leading to weakenedbone structure. Please note that this is much, much less common than osteoporotic hip fractures.
- Prolia — this one I would avoid unless I had a really good reason. It inhibits the enzyme that breaks down bone, which means the net effect is like Fosamax— a change in the balance of bone loss and bone formation. It doesn’t cause reflux. It can cause osteonecrosis of the jaw. It can affect immune function, increasing the risk of infection. And the kicker— although it works in a similar way to Fosamax, it doesn’t stay in the bone and continue to protect you if you stop taking it. Instead, you quickly lose all the benefits of the drug. People who stop it have a significant risk of cascading vertebral fractures that are not prevented by switching to Fosamax... so you have to keep taking it even though it may eventually make the bone structure abnormal. On the other hand it is reportedly more effective than Fosamax when used after Forteo, if I remember correctly.
There are risks to taking any of these meds, but here’s what you need to understand: there are also risks to NOT taking them. Bone loss is physiologic — it starts in your mid-30’s and continues throughout life. If your bones are weakened enough to cause a hip fracture, you will likely have a significant change in your functional status. Hip fractures can even be fatal. Also even if you are treated for osteoporosis, there is of course no guarantee that you WON’T break a hip. If you want a concrete breakdown of the numbers, I recommend you ask your doctor to use the decision support tool for osteoporosis treatment put out by the Mayo Clinic. It will break down what your risk of fractures is over 10 years and show you how many people with similar risk levels will be helped by treatment— and how many will not.
^^^ That was very kind and helpful, though really, still discouraging to know - thank you for taking the time to post that all.
I have to say they all seem like temporary courses of treatment. Would your best course of action (in general, we are all different, have different circumstances of course) be to def decide with your doc one or none of the above but also pair with frequent weight bearing exercise, including reasonable weight training (lifting weights - don’t think barbells! ), calcium/D/K? supplements and foods rich in calcium ???
Thank you @CIEE83. My mom is 82 and this is her first treatment and I don’t anticipate her being on it for years of course. Her doctor did show me the results of some tests and there were certain numbers that I don’t recall but if you were over or under a benchmark that indicated that the risk of a hip fracture outweighed any drug risks.
It’s the FRAX score. Here’s the questionnaire to determine yours:
@abasket - Fosamax is not taken indefinitely but because it is taken up into bone, it continues to protect against bone loss, typically for years after stopping. If bone turnover starts to increase after a time, there is the option to resume it, possibly for a shorter period than the original treatment. As for weight bearing exercise— this can help to improve bone density and is always recommended— but if you stop doing the exercise, the benefit goes away.
Calcium intake should be 1000-1200 mg daily. This doesn’t mean 1000-1200 mg of supplements— it means total intake. So if you have one serving of dairy daily, you are probably getting about half of your dietary needs (calcium is also found in green leafy vegetables and other foods) and should take a supplement of 500 or 600 mg daily. I take a 500 mg calcium gummy and cut it in half and take it twice a day rather than taking it all at once. You should also get somewhere between 600 and 1000 IU of calcium daily. Note that adequate calcium and vitamin D intake CAN NOT prevent bone loss; they can only limit it to the physiologic minimum. The reason to take them is to replace the calcium that you lose in your urine every day. If you don’t get enough dietary calcium, or if you’re unable to absorb it because you are deficient in vitamin D, you will pull calcium out of your bones to maintain your blood calcium level— as it’s essential for muscle function.
And again— the Mayo Clinic decision osteoporosis support tool, readily searchable on the internet, will help you and your doctor decide whether you think it’s worth it to start on treatment.
My docs have recommended 1200-1500 grams of calcium outside of food intake. I have a decent diet that includes daily calcium in the form of milk, yogurt, cottage cheese, regular cheese and green leafy veggies like kale several times a week.
I think that supplements and quantity should be something recommended and cleared by each individuals physician.
Does anyone have suggestions for preventing falls and minimizing fear of falling? I’d like to walk outside more in the winter but I’m close to petrified about slipping and falling when I’m walking the dog. (I’m 57, I possibly have osteoporosis, I’ve broken a bone in my foot, and I’ve had four bad falls in the past 10 years or so, including one when I hit my head on the pavement when the dog pulled me down while I was standing on ice.) My immediate neighborhood does not have sidewalks.
Walk inside at a mall or gym? Get a walking stick! Many people of all ages use them - you can use one or two but they really help with balance. I bought my mom one in the fall on Amazon that was not expensive and highly recommended.
Last physical - and because of the osteoporosis - my doc wrote a script for a couple PT sessions to focus on balancing. I don’t have balance issues I think she just thought it might provide some tips for good habits. I did not choose to use the script.
@VeryHappy thanks for that link, which I learned a lot from. My notes from mom’s appointment indicate that she was at “4.6 for hip fracture” and the doc said they start treating you once you reach “3.” I don’t recall what that scale was though because we had already made the decision to treat.
@rosered55 do you do any yoga? I like to practice poses like tree pose, etc at home to get my legs comfortable with balance. But I can see how walking a dog might make you more liable to fall.
@rosered55: What I do for balance is, at the gym, stand on a Bosu ball while I lift not-too-heavy weights. Here’s what that is. I stand on the flat side: https://smile.amazon.com/Balance-Trainer-Strength-Exercise-SKB/dp/B01GDT4OSA/ref=sr_1_8?ie=UTF8&qid=1546375088&sr=8-8&keywords=Bosu+ball
I also do some yoga poses that require standing on one foot at a time while moing my upper body around.
The more you practice balancing, the better off you’ll be if you do miss your footing at some point. It somehow trains your brain to react in the right ways.
Thank you, @VeryHappy.
I try to work on balance, too, but the 3 bad falls I’ve had since late October didn’t have to do with balance. Falling is scary! I’ve gotten really nervous about footing and light levels.
@VeryHappy Thanks for the link. I ran my numbers. I don’t think I have any issues at this time, but I’ve enjoyed the discussion and learning from everyone here. Thank you!
@rosered55, I agree about the cane/walking stick. It is very stabilizing and I think you could handle it with the dog.
If it’s helpful, these are the walk sticks. Not a cane! In addition to stability, people use these for safety and for a better cardio experience. Different grips come with them for smooth surfaces, snow, etc.
https://www.amazon.com/gp/product/B00WTUVBMA/ref=oh_aui_search_detailpage?ie=UTF8&psc=1