Osteoporosis Community

What are the effects of Boniva on postmenopausal women. My bone doctor wants we to take it because I am having some bone loss but I have read some very disturbing patient feedback on the internet regarding this drug.

Please Help

Thanks,
msbarbs1

Boniva has a positive effect on your bone density. It has been proven to reduce fractures.

As for side effects, each person is different. Most people who post on the internet about a drug or illness are the ones with a negative story to tell. The vast majority of people who take these drugs meet with success.

For more information about Boniva and the other bisphosphanates, look at the National Osteoporosis Foundation website (www.nof.org ) There you'll find validated, unbiased, reliable information.

Thank you VERY much for your feedback since I have been very skeptical about taking this drug, even though my doctor prescribed it about a month ago. I will give it a shot and see what happens.

Thanks again
msbarbs1

I want to know about the long term use of medicine like Forsomas, Actonel, Bonvia. That can cause cancer of throat, if taken over five years? I have been on them for more than 15 years. My scan is 2.0 last time? Should I stop taking them for a while, the pain in joint are something else. Of course my bones are wore out from so much Predisone use, not taking it now?
Thanks Nelliw B.

You're right, prednisone is very hard on the bones. In fact, people on long term prednisone use can get a bone density every year and some every 6 months. It's that harmful to the bones.

If you're not on the prednisone now, have been on Fosamax for 15 years and your T-score is at a 2.0, ask your doctor about taking a break. If your T-score is at a -2.0, I'd stay on it. A lot of doctors who have patients who've been long term bisphosphonate users are agreeing to take them off and monitor their bone density. If it stays the same, fine. If it starts to go down or if they fracture, back on it.

I'm not sure the Fosamax is causing the joint pain. It may be from the condition which put you on the prednisone or it could be from arthritis. If taking Tylenol or Advil relieves your joint pain and the Fosamax reduces your risk of fracture, you'd be better off staying on the meds. You need to talk with your doctor about the risks and benefits for you.

I am a 42 year old premenopausal woman with osteoporosis. Original T-scores in 2009 were -2.7 hip, -1.8 spine. I took Fosamax for 2 years. In 2010, my scores were stable. In 2011, despite calcium, vit D, concentrated efforts to do weight bearing exercise, my T-score fell to -3.0 hip, -1.8 spine. My doctor says the Fosamax did not work and wants me to try Reclast IV infusion. What are the risks/benefits to me as a pre-menopausal woman?

Thank you kindly for any help!!

You're tiny, you're of Asian heritage, you're female and are unsure of your estrogen status. All pretty high risk factors for osteoporosis.

It may very well be that your bones are thin now because you never built them to their peak potential bone mass during your bone building years. They may have always been thin and only now that you've been tested, you know this.

Also, if you're in the perimenopause stage now and you're producing less estrogen, it will show up in your bone density. That could account for the low numbers.

Too, being premenopausal, you should be looking at Z-scores, not T-scores. They typically are a little higher than the T-scores. Once you pass through menopause, you'll be concerned with the T-scores.

Are you on the birth control pill? The estrogen in them would also be of benefit to your bones. Why is your doctor opposed to testing your estrogen levels? Do you still have regular normal periods?

In your situation, I would certainly be taking an osteoporosis medication, especially if you're not planning on getting pregnant. The benefits far outweigh any risks to you. The Reclast is especially effective on the hip area, which may be why your doctor suggested it.

I'd also take a calcium supplement that you chew instead of swallow to get the maximum absorption possible. Take with meals twice a day. Also 2000 IU of Vit D. Has your doctor checked your Vit D levels? If not, ask that that be done.

I hope this helps in your decisions.

Thanks, bonebabe! I am frustrated/confused that despite taking more than enough calcium, vit D (I just got tested, levels are 50), doing concentrated weight bearing exercise and taking Fosamax, I am rapidly losing bone. I just wish I knew why so I could address the problem before rushing into taking Reclast.

I have always been thin, and for most of my adult life I only weighed 90 lbs and my menstrual cycles were long and irregular. My theory is that my estrogen levels were too low during my 20's and part of 30's and thus my bones suffered. I had to gain 10 lbs in order to conceive and have babies. My cycles are much more regular now (between 31-35 days), but does that mean my estrogen levels are okay? Again, my theory is that I have to stay above 99 lbs and keep on a little body fat to keep my estrogen levels. My endocrinologist could care less - he says the medications are designed for post-menopausal women with no estrogen. He says it is useless to test my estrogen because even if they were low, he wouldn't prescribe estrogen supplements due to risk of breast cancer. I am not on the pill and I am finished having children.

What are the risks and benefits of Reclast? If Fosamax didn't work for me, what does that say about how I will respond to Reclast?

Finally, is it true that exercise provides minimal benefit? I was put off by this comment from my doctor. He even told me to stop if I wanted. I walk with a weighted vest and I do weight bearing exercise to build up my hip muscles and spine. I work very hard at this each day and plan to continue.

Thank you so much! bonebabe - are you a physician or nurse? You seem very knowledgeable.

Sounds to me like you need to talk to another doctor.

No, I'm not a physician or nurse. And don't want to be

I've worked in an internationally accredited osteoporosis center for 15 years. I facilitate an osteoporosis support group, do community education programs, perform the Sahara ultrasound screening at health fairs as well as conduct pediatric tours and do school talks in the community. I attend annual NOF meetings, some ISCD meetings as time and budget allow and interact with the 4000 or so patients who come to our center each year. I've also traveled with our mobile unit to participate in studies on osteoporosis for UNC at Chapel Hill and appeared in two PBS documentaries featuring out program.

Exercise is critical to bone mass in that the pulling of the muscles on bone stimulate bone growth. Do not give up your exercise.

I'm inclined to agree with you that your estrogen is playing a big part. I'm also thinking that you didn't have much bone mass to start with and are, therefore, your loss is showing up faster and more dramatically.

Reclast is a good drug - as is Fosamax. Just because one didn't work doesn't mean another won't. While they're the same type drug, it's like changing antibiotics and antidepressants if one doesn't work. You keep trying until you get a good fit.

Also many of our patients take hormones in addition to another osteo drug. If your risk of breast cancer isn't great, I'd think your risk of fracture would trump that.

Can you not talk to your OB/GYN instead of this endo? Sounds like he's a My Way or the Highway type person.

Also, if you haven't checked out the National Osteoporosis Foundation website, do so. www.nof.org . It's chock full of all kinds of information and has a good FAQ section.

Thank you, bonebabe! I used to work in the osteoporosis field, too, at a medical device company. With all your experience, have you run across case(s) like mine? Pre-menopausal, calcium, vit D, family history, small build, Fosamax, regular weight-bearing exercise...but still losing bone? I'd love to hear any experiences with similar cases and any encouraging stories of patients who still were able to improve their bone health. That would mean a lot to me.

Do you think there's benefit to me trying to gain weight to improve my estrogen levels? I notice if I gain a little weight, my periods are more regular.

Otherwise, my plan is to consult another endocrinologist that my PCP recommended, keep up calcium vit D, keep exercising. I just learned my endocrinologist is a paid consultant to several pharmaceutical companies, so I am not sure he has my best interest in mind when pushing the Reclast. I just want to make an informed decision that is right for me.

Thanks so much for your help and support!

I am also having bone loss. My GP does not seem to want to recommend a "bone Dr". Is your Dr an internist? If not, what designation does he have. Many thanks in advance for your answer .

For an osteoporosis specialist, look for a rheumatologist or an endocronologist. In the meantime, get the NOF booklet "Boning Up on Osteoporosos" from the National Osteoporosis Foundation's website. www.nof.org . Currently I believe it's only a dollar. Great book. We use it as a teaching tool for our osteo rehab classes.

Seriously, you just scared me. My doctor just ordered this for me after diagnosis as osteoporosis. Am concerned with taking biphosphonates....and their impact. My results were 2.7 femoral neck, 2.1 hip, and same in L1 thru l4......was thinking about just taking supplements (1500mg of calcium D) to see who that goes. I have always exercised (he wasn't even concerned about that) and have a good diet (he thinks I should eat more- honestly, even though I weigh 94 lbs- I eat like a horse. have been on diets to gain before and they never added an ounce, gave that up since I was just flushing money) My husband friends and family laugh when he said eat more...do you have another suggestion.

Take the meds. Your risk of fracture far far outweighs any of the rare side effects of a bisphosphonate. You could take Reclast, the annual IV to avoid the gastro side effects that are more common. Take it. You won't get a second chance to rethink your decision once you start to fracture or get bent over.