THIS! I also generally respect and trust my doctors and am not one to refuse medications on general principles. However, I have been really disappointed in the quickness of many internists and endos to push the bisphosphonates. I fired my first bone doc last year because I felt like she really wasn’t up on the latest thinking on the meds. I’m much happier with the current doc and really trust her. She does prescribe the bisphosphonates, but not without serious consideration and then tries to limit the course of treatment.
“Trust but verify” is my personal motto when it comes to doctors who are quick to prescribe something that has bad side effects for a slow-developing condition that could be treated via other means. Of course I would not refuse to take cipro for an acute kidney infection, but stuff like bisphosphonates… makes me think twice.
My doc thinks I’m doing fine in the calcium department with my dairy-based diet, and despite my risk factors, I’m not yet due for a bone scan.
@fireandrain , Thanks for the hint about tracking calcium in My Fitness Pal. I went into settings and changed it. I was able to then go back over my food diaries to see that I’m not getting enough calcium solely through my diet. Even more helpful is to go into the Reports tab/Charts and Reports and choose Calcium from the Reports dropdown list. I can view 7 days, 30 days or 90 days and see on a bar graph what my calcium intake was. Very revealing! I do take supplements but in view of the recent reports, I wonder if I should keep taking them. I’m only averaging about 50% of the RDA through diet.
I am now kind glad I am the world’s worst at remembering to take OTC meds. Have jars of Calcium and Vit D that I have only minimally taken. IT usually upsets my stomach anyway.
The T scores refer to how much “off” from a normal-aged woman with normal bones you are. The Z scores, which I’m provided with also, refer to how much “off” you are from a woman your own age.
The scores don’t compare themselves to the last times. You could have -2.5 one year, -2.4 the next, -2.6 the next – and all those scores are very close to each other.
The official definition of osteoporosis is at least a -2.5 T score. Docs have for years been prescribing the bisphosphonates for women with osteopenia, which is a score of at least -1 but not as bad as -2.5. Some folks think it shouldn’t be prescribed if you’re only osteopenic.
ETA: @fireandrain: I’m curious what your friend’s heart condition is, which make the bisphosphonates inappropriate for her.
@veryhappy thanks for that explanation.
The drug increases the risk of atrial fibrillation. She’s already had surgery for atrial fibrillation so the last thing she wants is for that to happen again. She was gobsmacked when she figured that out – very glad she didn’t just obey her doctor and take the drugs.
Bunsen if you have risk factors for osteoporosis then it might be a good idea to get a bone scan. I wish I had had one sooner.
I work very hard to get calcium in my diet. Luckily I like and can tolerate dairy. I eat an oatmeal from Trader Joes that has 35% of the RDA for calcium. I know the in-thing now is Greek yogurt, but the calcium is too low, so I never have it.
Oh, Fosamax made me think twice for about two years. It took the combined efforts of my primary, my gyn, and my endocrinologist to persuade me. In the end it was the endo who talked me into it. He showed me all kinds of studies, thoroughly discussed risk/benefit, ran a risk calculator, and was willing to answer my questions until I’d exhausted them. I felt like he was taking my fears seriously, but was also taking the disease seriously. And he was willing to tweak the recommended treatment plan, in that we decided on a two-year course to start, and if my numbers this December aren’t worse, I’ll take a two-year holiday and see how that goes.
My gyn just told me about a new drug to ask the endo about when I see him, which supposedly doesn’t have some of the horrific side effects AND seems to provide some protection against breast cancer. I’ll get the name.
It’s called Raloxetine, or something close to that.
I signed up for the forums on the Osteo website to peek there but that’s a little overwhelming…
So what do or have you agreed to do if you have osteoporosis issues?
- changes in your diet?
- a drug other than Fosomax?
- anyone try the yearly injection?
- anyone besides MOWC doing the (daily?) injection???
This all feels like such a crap shoot! Like I said, I am asking for a referral to a better “expert” than my family doc - who is new to me and nice and all but no expert by any means - I just CANNOT put that medicine (Fosamax) in my mouth! I picked it up from the pharmacy but it remains on the kitchen counter.
^^ That’s Evista - a modified estrogen. It’s not new, but it’s second-line because it hasn’t been shown to prevent hip fractures - the most devastating outcome of osteoporosis.
I was first diagnosed with osteopenia over 10 years ago- and things did not improve. I did do a year or more of the Fosomax/Boniva drugs. Since I am a competitive distance runner, I pretty much refused to take all this seriously for many years. I still have trouble with it, since it is such a silent disease, and I have NOT had any of the weird spontaneous fractures that really scare you. If I didn’t do so much running (with a risk of falling), I might not have agreed to the current course of Forteo. For ME, it is the best choice. It is extremely expensive if you don’t have ways around that. It’s inconvenient and it’s a friggin’ SHOT! It also has risks. I hope it has helped. We shall see in May!
Rooting for you MOWC!
Yeah, my doc kept asking me all these questions to point to signs of it? Do you drink a lot of caffiene? No. Don’t exercise? I exercise several times a week, weight bearing. Any pain in your back,neck, etc.?? Nope! Don’t need to lose weight. On and on. I did menopause sort of early - even that came and went with no side effects - periods just became less and less and one day I just didn’t have it anymore! No issues.
Yeah, I don’t think I could do the daily shot thing.
Makes you wonder if the risks are worth the risk of NOT taking anything! Need to find some happy medium.
abasket, I think it’s hugely influenced by genes. And IIRC we stop building bone at some ridiculously young age, like 25. So those gallons of coffee I used to drink years ago had their effect, even if I drink none now. Now it’s about preservation of what I have and, if I’m lucky, building back a little bit. But it’s also about trying to avoid a devastating fall in the first place, so I work out to build muscle strength, flexibility, balance. I’m trying both to build stronger bones AND to do what I can to avoid falls. Managing osteoporosis is multi-faceted, and it’s a long game.
But that’s me. The folks on this thread have all kinds of regimens to treat the problem, different medications or none, different diet and exercise. What works for the rest of us won’t necessarily work for you. And it all has to fit into your life, and you have to be at least somewhat comfortable with it. So you’re on the right track in requesting a referral to a specialist. He/she will be able to tailor a program to your specific condition, lifestyle, and wishes. If you refuse to take Fosamax (I think a lot of women do), then you’ll find out about alternatives, the doctor will help you weigh risks and benefits, and you’ll decide what to do for your individual case.
Thank you LasMa. 
Lifting weights has been a tremendous help to me. IMO, it’s a very important part of managing this disease.
The Forteo injections aren’t that bad, fortunately. I HATE needles, and I’ve done fine. It s a tiny short thin needle that goes into the skin and doesn’t hurt. The biggest pain is that the injection pen needs to be refrigerated and traveling with it requires this special case and ice packs. My doc told me not to bother for short trips.
I think your age and physical condition and body type play a role in treatment. I think my specialist looked at me and saw a mid-50s woman in good shape – as opposed to a fragile woman in her 80s. If I were the latter I’d definitely be on drugs. She’s already told me that she will put me on drugs eventually, just not yet. Part of the issue is timing, since you can only take the bisphosphonates for 3-5 years. She thinks it makes more sense for me to take them when I’m older.
When I was first diagnosed and saw my first specialist (when I lived someplace else), I was in a total panic. She looked me in the eye and said, “you do not have the bones of an 80 year old.” She said I was small-boned and probably never had the solid bones of the young women the T-score is comparing me to. Part of the equation is figuring out your risk of fracture. So my bones look bad compared to average, but they may have always been bad and they haven’t been fracturing.
What I don’t like is that I’m considered to have this horrible disease and yet I feel perfectly fine, but who knows if I’ll have a spontaneous break in my hip or rib that incapacitates me.
The other issue is bone architecture. Something I read mentioned that it matters very much how your bone is structured not just its density. I tried taking calcium, since I am also in osteopenia - but it upset my stomach and I decided that I didn’t want to mess with my system.
I went ahead and did the risk calculators. I realize these are just basic survey/guides.
The FRAX showed a 10 year probability of major fracture at 6% and a .5% of hip fracture
The FORT showed a 10 year probability of major fracture at 5% and less than 1% of hip fracture.
Good to just gather some of this info to discuss at my appointment.