Don’t want to take the drugs

[Lizflow1]

Have had secondary osteoporosis for many years, and my T-scores continue to decline. Just had another dexa scan yesterday, and lost 1/2 inch in height. Had serious problems with Fosamax 20+ years ago. Currently on HRT estrogen only patch. Am certain when I go back to both primary and endocrinologist docs in a couple weeks, they will be trying to persuade me on one of those dreaded injections again since my latest numbers are certain to be even lower. 67 years young.

[Greekolives]

I had used Fosamax many years ago and it had helped, but I didn't like taking it. So, for years after I took nothing for my osteoporosis. My bones declined badly, and eventually I agreed to Prolia injections every 6 months. That helped my hip, but not my spine. My spine continued to decline to the point I had to do something as I had broken my wrist, too. So now I am on my second year of daily injections of Forteo. When my two years are up, I will have to go on something else to maintain the bone I have regained with Forteo. If I don't I will lose what I have gained. During the time I wasn't taking medication for my bones, I was taking calcium, exercising, and trying to treat my osteoporosis by natural means. It didn't work for me. Eventually, my bones became too fragile, and I had to take medication. The people who break a hip and end up in a wheelchair generally do not fare very well. I have a friend who is a pharmacist at a hospital and he says he has seen people decline after a bad fall. I like to be active with my grandchildren, and didn't want to end up an invalid, so I finally accepted treatment. Just my story, and I wish you well in your decision making. Sadly, there are no easy answers.

[Loveballet]

If you get a chance look up a note I shared here about my experience with the current regimen of taking Fosemax. So much has changed about it in 20 years. It’s now taken once a week with the goal being enough improvement over 3-5 years that you can then take a “drug holiday” from it for a bit until it’s needed again. I started it with great fear and trepidation last July and have no problems with it at all. My most recent DEXA had not progressed for the first time in years. Hoping for even better in the days to come. Good luck to you as you make your decision. I too hated the idea of injections.

[dcdream in reply to Loveballet]

I'm in the same position as you and my doctor suggested the same treatment you started. I'm a wreck about starting Foxamax but feel like I have no other options esp since my spine is getting worse, now at -3.4. I feel pretty alone about this and have been trying all the natural methods to do avail. I'm 68 and feel like I have no options but drugs now.

[Mark_ABH]

Hi Lizflow1, you mentioned you have lost 1/2 inch of height. This indicates you might have had one or more fractures in your spine. Have you gotten X-rays of your spine or a vertebral fracture assessment? Unfortunately, once you start breaking bones in your spine, your chances of having more fractures increase exponentially. There are a lot of health problems that come along when you start hunching over from a bunch of broken vertebrae, not to mention a lot of pain and discomfort.

I am also interested to hear that you are on HRT. These days, it is used more to prevent osteoporosis rather than to treat it. And it is used more for women younger than 60.

I hope you will hear out your doctors about the available treatment options. You have gone past the prevention stage if you are having broken bones in your spine.

Good luck!

[Lizflow1 in reply to Mark_ABH]

Yes, I have had previous compression spine fractures after a bad fall 30 years ago. I know how painful they are, and to my knowledge, haven’t had others. When my secondary osteoporosis was diagnosed, many years ago, Fosamax was a brand new drug, and my endocrinologist put me on that. Within a few months, my platelets dropped severely, and as soon and he took me off of them (and reported to FDA, as at that time it wasn’t a known side effect). I then started Miacalcin nasal spray. After hysterectomy, I started on estrogen only HRT, and T scores remained fairly stable, but still in osteoporosis stage. No longer take Miacalcin, but am considering asking for it again, as I believe it did help my spine. Am afraid of newer drugs, or drugs in general. Synthroid dosage after thyroidectomy in the 1970’s, is the cause of my secondary osteoporosis. Will need to do something, but like others here, not sure exactly what.

[yogalibrarian]

No one "wants" to take drugs. Only in drug company ads do you see people skipping across meadows "wanting" to take them.

You don't see as many ads for the life-altering/life-ending consequences of a fracture. (In the last few years, I know 2 people who died as a result of hip fractures and another who is permanently disabled and using a walker.)

One of the biggest consequences of osteoporosis can be fracture. Know your risk and use that information as a major part of your decision about medication.

Your age alone increases your fracture risk. If you layer secondary osteoporosis and declining bone density that can greatly increase your risk.

Diet, lifestyle, and exercise are baseline requirements for all of us. Those might keep you at your current levels or slow the decline. How much more would you have to do actually reverse bone loss?

If your doctor prescribed medication for another chronic medical condition--diabetes, high blood pressure, heart disease, kidney disease--would you take it?

[Met00 in reply to yogalibrarian]

There's a difference between osteoporosis meds and meds for conditions like diabetes and heart disease. If fracture risk is low, why would you want to take a medication that doesn't even guarantee to prevent fracture? If you have a 10% chance of fracture, that means if 100 people have the same fracture risk, only 10 will fracture. The bisphosphonates only reduce fracture risk by about 50%, so taking something like AA would mean that 10% fracture risk would reduce to 5% - in other words, 5 in 100 people would be prevented from fracturing, but 90 of them wouldn't have fractured anyway. It's explained very clearly here (NICE is the UK medication regulatory body): nice.org.uk/guidance/ta464/...

[yogalibrarian in reply to Met00]

I agree. You don't take the meds if you are at low risk of a fracture. (If your healthcare provider suggests meds when you are at low risk then you need a serious discussion about why--there may be a good reason or may not.)

* Low risk is considered to be below 10%,

* Moderate risk is 10-20%.

* And high risk is 20% and above. That 20% risk level is used for some other chronic conditions as well.

The moderate risk level is a more nuanced choice. You need to determine what puts you in moderate risk. In general white women with no other contributing factors "age" into moderate risk at about age 65. Age alone -- with no other risk factors -- probably would not be a good enough reason for the meds.

But a previous fracture is a good reason.

The various fracture risk calculators were developed initially for this purpose. To figure out who would benefit from medication. They are part of the toolkit used by healthcare providers to determine who is a candidate for meds. Clinical judgment and expertise are another big part.

[Met00 in reply to yogalibrarian]

And yet some doctors prescribe a bisphosphonate as a "preventative" measure for osteopenia or scores only just into osteoporosis, when there are no previous fragility fractures and low fracture risk. Sadly it isn't uncommon for patients to be better informed than general practitioners.

[yogalibrarian in reply to Met00]

Personal Opinion: Be an informed patient. Ask questions. And work with a healthcare practitioner with some expertise when treating a chronic condition. The endocrinologist who treats diabetes may not have expertise.

That being said... there are many people who don't have access to experts -- and may not have good access to the healthcare they need.

In the US healthcare can be elitist. I worked at a well-respected medical school where administrative staff would talk about only seeing the top-rated experts. And a mile away, our neighbors had no access to healthcare.

[Met00]

When you say you've lost 1/2" in height, is that in a short space of time, or since you turned 40? We all lose height as we age, due to things like drying out of the discs, arches flattening out, with it being normal to shrink by about 1" or more over the years. Articles I've read on the subject suggest anything between 1/4" and 1/2" height loss per decade after age 40! The time to be concerned is if you've suddenly lost height, rather than it being a slow process.

[UkuleleStrummer]

A couple of thoughts in measuring 1/2 inch shorter: You are taller in the morning when you first get up, and you shorten a tad bit as the day progresses due to gravitational pull. Also, hydration plumps up the spaces between your vertebrae and dehydration decreases it. My doctor explained this when I was upset that I had shrunk. Sure enough, next time, I had my height back. I am only 5’3, so I need all the height I can get, lol!

[Pte82]

Lizflow1, Dr Jorge Flechas MD has a youtube video titled Boron and Health where he says boron stopped his height loss. Like you he lost half an inch and an associate told him about boron and he experienced no further loss.

[StThomas]

I understand your concerns about meds and their side effects. My last numbers were spine -4.6, hips -3.1 and -3.2. I am a RN, Gerontologist and highly cautious because I believe the pharmaceutical companies own this country. I chose diet/calcium/vit D/resistance exercise for fourteen years. I have never had a fracture. I decided last year to follow my endocrinologist recommendation and take Reclast injections for three years. My second infection is due next month. I learned a lot from this site and other research sites i.e. how important it is to have the same machine for testing to compare results. I weigh 99 lbs and the numbers are calculated for heavier women. Take your time and continue to collect information.