OT? Maybe not… Osteoporosis and Bisphosphonates

nevertoolate · 08-10-18, 12:25 PM

First, this may not be off topic. Osteoporosis can influence our fitness routines and there are some osteoporosis-related workout DVDs out there.

Second, I am NOT requesting medical advice for myself regarding any particular condition.

So those disclaimers aside, I’ve had a diagnosis of osteoporosis for 15+ years. I fractured my wrist 15 years ago while running on concrete. I had surgery and a full, uneventful recovery. At the time, my doctor recommended I take Fosomax, which I declined because of concerns about the possible severe side effects. I did a lot of research to come to that decision.

I’m now almost 70. Recently I was briskly walking on a concrete sidewalk, turned to look behind me, and tripped and went down hard, again breaking my wrist. I had surgery and am healing nicely with an anticipated full recovery. My bone scan (DXA) shows worsening osteoporosis and my doctors are again after me, more strongly this time, to start taking an osteoporosis medication, either orally or by monthly or yearly injection. I still have major concerns about the possible side effects. I wonder if the risk of the cure is worth the risk of the disease. I’m also not convinced that low bone density is a disease that necessarily needs to be treated. I have small bones and a certain amount of bone loss with aging is normal.

Can any VFers with osteoporosis or osteopenia share their experience with taking bisphosphonate drugs? Which drugs have you taken and what side effects, if any, have you experienced? How long have you taken them and what improvements in your bone density have you seen? And if you have declined taking them, what were your reasons and what else have you done to minimize risk of fracture?

I’d really appreciate any feedback. If you’re not comfortable sharing it here, please send me a PM. Thanks!

Yours in fitness and health.

Ann

beyond.omega · 08-10-18, 01:37 PM

I have no experience with the problem nor the drug you mentioned. However I wanted to share that my former Callanetics instructor said that Callanetics was enough to keep her bone scans normal until she passed in her 70s. In fact in her 50/60s they found her scans were normal everywhere except her cervical spine. She added upper body exercise to the Callanetics routine (those 2lb dumbell exercises and occasionally a little pushup action at the end of plank) and then at her next appt her scan showed inprovement to normal.

What are you doing for exercises?

Lannette · 08-10-18, 02:00 PM

Quote:

Originally Posted by beyond.omega

I have no experience with the problem nor the drug you mentioned. However I wanted to share that my former Callanetics instructor said that Callanetics was enough to keep her bone scans normal until she passed in her 70s. In fact in her 50/60s they found her scans were normal everywhere except her cervical spine. She added upper body exercise to the Callanetics routine (those 2lb dumbell exercises and occasionally a little pushup action at the end of plank) and then at her next appt her scan showed inprovement to normal.

What are you doing for exercises?

I love this! May I quote you Omega?

DawnP · 08-10-18, 02:55 PM

I've been on alendronate (generic for Boniva) for 6 months now. I got diagnosed with osteoporosis of my spine this year. Apparently my hip bone density is very good - my doctor said I can thank exercise for that!

My mom & grandmother had terrible osteoporosis of the spine, so it's likely genetic.

I was told 7 years ago that I had ostepenia and needed to bump up my vitamin D and calcium intake, which I did. Didn't take.

I haven't had any side effects from the alendronate. I take the monthly pill. You have to be very careful how you take it - take it on an empty stomach, sit or stand upright for an hour, no food or water or beverages for an hour afterwards. No issues here.

My doctor says that he would prefer for me to be on the Prolia injections (twice yearly) but my insurance insists I try this first. He says that the biphosphonates are very effective and if I tolerate them I can stay on them up to 5 years.

After 5 years apparently they can make your bones *too* hard and folks get issues (especially the scary osteonecrosis of the jawbone). But he plans to submit an authorization request to get me onto the Prolia after a year or two on alendronate.

Because I am having issues related to scoliosis, I am hoping that by jumping on this at 55 yrs old I can prevent having spinal compression fractures later on.

BTW, I am now up to 1000 mg of calcium carbonate and 5000 units of vitamin D daily to assist in bone building.

I will let you know if my numbers improve at my next DEXA scan, to see if the drug worked.

For me the benefits outweigh the risks and my doctor and I are being cautious - I'm also pretty proactive because I'm a pharmacist at a hospital where I see the end effects of folks not taking care of their bone health.

My best to you.

marso · 08-10-18, 04:42 PM

In both hips - penia in the spine. I am 55 and have tried excercise, vitamins, hormones etc. Any comments or things that have helped ? I fell three years ago on ice landed hard and broke my ankle so my doctor keeps pushing me but the horror stories freak me out. Last doctor said not to believe all ththe stuff you read but hey who knows

videofit · 08-10-18, 08:52 PM

I started getting bone loss when I was diagnosed in menopause. My gyn was a member of the North American Menopause Society so always up to date with the latest research. She did blood tests and prescribed estradiol patches and progesterone. I get bone scans every two years and my bone loss never got worse.

I'd suggest finding a physician who is a member of that medical society.

bjones · 08-10-18, 09:15 PM

If you are in your 50s or early 60s, estrogen and progesterone are the way to go. I've been on continuous estrogen/prog since I was in my 40s (early menopause) and my bone density is better than a 30 year old. I'm 61 currently. Both mom and grandma had severe osteoporosis with fractures of wrists and vertebra. Its highly hereditary so I am very pleased with my protection regiman. Oh and no hot flashes either and many other benefits to my lady parts. By the way, I am a retired MD. The data on estrogen use in women has been re-studied with further follow up and it is NOT the kiss of death that was first told to women years ago. A lot of women went off their estrogen and are now paying the price with osteoporotic fractures. Its now approved as a second line of therapy for osteoporosis.

eam531 · 08-10-18, 09:36 PM

I third what videofit and bjones wrote. My gynecologist is also a member of the North American Menopause Society. I was very leery of hormone replacement therapy. My doctor showed me some medical articles and talked to me a long time about the benefits. She convinced me. I'm on estrogen (estradiol) and progesterone as well as supplementing with Vitamin D and liquid calcium. My dosage of Vitamin D is pretty high by her orders (5000 mg/daily)--I live in western NY state and for months of the year, we just don't get much sunlight.

I do have osteopenia. I hope that the hormones, the supplementation, strength training 3 times a week, plus yoga, other body-weight exercises, and a lot of walking will keep it from progressing. If it doesn't, I'll have a long talk with my gynecologist about the pros and cons of pharmaceutical intervention.

DawnP, your post was extremely helpful.

LAC · 08-11-18, 07:48 AM

I'm 54 and received an osteoporosis diagnosis a couple of years ago. I've done a ton of reading on the subject since then and what I've found is that there is a lot of conflicting information and, in my opinion, not a whole lot of good research to date. I suspect that is because while both women and men can end up with osteoporosis, for the most part it primarily affects women and we get short shrift in a lot of medical research.

There is also no medical specialist dedicated to osteoporosis treatment - some people get prescriptions from their gynecologist, some people from their family practitioner, some from endocrinologists and some from rheumatologists. I think this adds to the confusion about what is best practice for treatment.

Currently I'm on Raloxifene (generic Evista) and my scores are holding steady. Raloxifene is a SERM (selective estrogen receptor modulator) that works like estrogen on bones, but not on breast tissue. I can't take HRT or BHRT due to my history with ER/PR positive BC. While my endorinologist prescribes it for me, she lets me know every time I see her that she does so with great reluctance and she would prefer it if I would agree to Fosamax or Prolia. Neither one of those options really thrill me.

pgun3 · 08-11-18, 08:07 AM

Bisphosphonates

some you may want to steer away from like Fosamax and Actonel and also the IV drugs for Osteoporosis.

I work for an oral surgeons office and if you were to have an extraction the bone sometimes does not heal after an extraction and can become necrotic.

https://www.ndcs.com.sg/ForPatientsa...lications.aspx

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3942225/

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08-10-18, 12:25 PM
nevertoolate Join Date: Apr 2012	OT? Maybe not… Osteoporosis and Bisphosphonates First, this may not be off topic. Osteoporosis can influence our fitness routines and there are some osteoporosis-related workout DVDs out there. Second, I am NOT requesting medical advice for myself regarding any particular condition. So those disclaimers aside, I’ve had a diagnosis of osteoporosis for 15+ years. I fractured my wrist 15 years ago while running on concrete. I had surgery and a full, uneventful recovery. At the time, my doctor recommended I take Fosomax, which I declined because of concerns about the possible severe side effects. I did a lot of research to come to that decision. I’m now almost 70. Recently I was briskly walking on a concrete sidewalk, turned to look behind me, and tripped and went down hard, again breaking my wrist. I had surgery and am healing nicely with an anticipated full recovery. My bone scan (DXA) shows worsening osteoporosis and my doctors are again after me, more strongly this time, to start taking an osteoporosis medication, either orally or by monthly or yearly injection. I still have major concerns about the possible side effects. I wonder if the risk of the cure is worth the risk of the disease. I’m also not convinced that low bone density is a disease that necessarily needs to be treated. I have small bones and a certain amount of bone loss with aging is normal. Can any VFers with osteoporosis or osteopenia share their experience with taking bisphosphonate drugs? Which drugs have you taken and what side effects, if any, have you experienced? How long have you taken them and what improvements in your bone density have you seen? And if you have declined taking them, what were your reasons and what else have you done to minimize risk of fracture? I’d really appreciate any feedback. If you’re not comfortable sharing it here, please send me a PM. Thanks! Yours in fitness and health. Ann

08-10-18, 01:37 PM
beyond.omega VF Supporter Join Date: Dec 2006	I have no experience with the problem nor the drug you mentioned. However I wanted to share that my former Callanetics instructor said that Callanetics was enough to keep her bone scans normal until she passed in her 70s. In fact in her 50/60s they found her scans were normal everywhere except her cervical spine. She added upper body exercise to the Callanetics routine (those 2lb dumbell exercises and occasionally a little pushup action at the end of plank) and then at her next appt her scan showed inprovement to normal. What are you doing for exercises?

08-10-18, 02:55 PM
DawnP VF Supporter Join Date: Nov 2001 Location: California	Biphosphonates for osteoporosis I've been on alendronate (generic for Boniva) for 6 months now. I got diagnosed with osteoporosis of my spine this year. Apparently my hip bone density is very good - my doctor said I can thank exercise for that! My mom & grandmother had terrible osteoporosis of the spine, so it's likely genetic. I was told 7 years ago that I had ostepenia and needed to bump up my vitamin D and calcium intake, which I did. Didn't take. I haven't had any side effects from the alendronate. I take the monthly pill. You have to be very careful how you take it - take it on an empty stomach, sit or stand upright for an hour, no food or water or beverages for an hour afterwards. No issues here. My doctor says that he would prefer for me to be on the Prolia injections (twice yearly) but my insurance insists I try this first. He says that the biphosphonates are very effective and if I tolerate them I can stay on them up to 5 years. After 5 years apparently they can make your bones too hard and folks get issues (especially the scary osteonecrosis of the jawbone). But he plans to submit an authorization request to get me onto the Prolia after a year or two on alendronate. Because I am having issues related to scoliosis, I am hoping that by jumping on this at 55 yrs old I can prevent having spinal compression fractures later on. BTW, I am now up to 1000 mg of calcium carbonate and 5000 units of vitamin D daily to assist in bone building. I will let you know if my numbers improve at my next DEXA scan, to see if the drug worked. For me the benefits outweigh the risks and my doctor and I are being cautious - I'm also pretty proactive because I'm a pharmacist at a hospital where I see the end effects of folks not taking care of their bone health. My best to you. __________________ Dawn P.

08-10-18, 04:42 PM
marso Join Date: May 2012	I have osteoporosis In both hips - penia in the spine. I am 55 and have tried excercise, vitamins, hormones etc. Any comments or things that have helped ? I fell three years ago on ice landed hard and broke my ankle so my doctor keeps pushing me but the horror stories freak me out. Last doctor said not to believe all ththe stuff you read but hey who knows

08-10-18, 08:52 PM
videofit Join Date: Dec 2002	I started getting bone loss when I was diagnosed in menopause. My gyn was a member of the North American Menopause Society so always up to date with the latest research. She did blood tests and prescribed estradiol patches and progesterone. I get bone scans every two years and my bone loss never got worse. I'd suggest finding a physician who is a member of that medical society. __________________ “It is no measure of health to be well adjusted to a profoundly sick society.” Krishnamurti

08-10-18, 09:15 PM
bjones Join Date: Aug 2007	If you are in your 50s or early 60s, estrogen and progesterone are the way to go. I've been on continuous estrogen/prog since I was in my 40s (early menopause) and my bone density is better than a 30 year old. I'm 61 currently. Both mom and grandma had severe osteoporosis with fractures of wrists and vertebra. Its highly hereditary so I am very pleased with my protection regiman. Oh and no hot flashes either and many other benefits to my lady parts. By the way, I am a retired MD. The data on estrogen use in women has been re-studied with further follow up and it is NOT the kiss of death that was first told to women years ago. A lot of women went off their estrogen and are now paying the price with osteoporotic fractures. Its now approved as a second line of therapy for osteoporosis.

08-10-18, 09:36 PM
eam531 VF Supporter Join Date: Nov 2001 Location: Buffalo, NY	I third what videofit and bjones wrote. My gynecologist is also a member of the North American Menopause Society. I was very leery of hormone replacement therapy. My doctor showed me some medical articles and talked to me a long time about the benefits. She convinced me. I'm on estrogen (estradiol) and progesterone as well as supplementing with Vitamin D and liquid calcium. My dosage of Vitamin D is pretty high by her orders (5000 mg/daily)--I live in western NY state and for months of the year, we just don't get much sunlight. I do have osteopenia. I hope that the hormones, the supplementation, strength training 3 times a week, plus yoga, other body-weight exercises, and a lot of walking will keep it from progressing. If it doesn't, I'll have a long talk with my gynecologist about the pros and cons of pharmaceutical intervention. DawnP, your post was extremely helpful. __________________ Betsy There is no way of telling people they are all walking around shining like the sun--Thomas Merton People have done all kinds of remarkable things because they thought they could. People routinely fail to do quite ordinary things because they assume they can't--Reinhard Engels Stay gold, Ponyboy--S.E. Hinton Pick up your crazy heart and give it one more try--Ryan Bingham Disclosure: I have a personal relationship with a fitness instructor who has appeared in some videos.

08-11-18, 07:48 AM
LAC Join Date: Apr 2006	I'm 54 and received an osteoporosis diagnosis a couple of years ago. I've done a ton of reading on the subject since then and what I've found is that there is a lot of conflicting information and, in my opinion, not a whole lot of good research to date. I suspect that is because while both women and men can end up with osteoporosis, for the most part it primarily affects women and we get short shrift in a lot of medical research. There is also no medical specialist dedicated to osteoporosis treatment - some people get prescriptions from their gynecologist, some people from their family practitioner, some from endocrinologists and some from rheumatologists. I think this adds to the confusion about what is best practice for treatment. Currently I'm on Raloxifene (generic Evista) and my scores are holding steady. Raloxifene is a SERM (selective estrogen receptor modulator) that works like estrogen on bones, but not on breast tissue. I can't take HRT or BHRT due to my history with ER/PR positive BC. While my endorinologist prescribes it for me, she lets me know every time I see her that she does so with great reluctance and she would prefer it if I would agree to Fosamax or Prolia. Neither one of those options really thrill me.

08-11-18, 08:07 AM
pgun3 Join Date: Feb 2003 Location: MI	Bisphosphonates some you may want to steer away from like Fosamax and Actonel and also the IV drugs for Osteoporosis. I work for an oral surgeons office and if you were to have an extraction the bone sometimes does not heal after an extraction and can become necrotic. https://www.ndcs.com.sg/ForPatientsa...lications.aspx https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3942225/