Osteoporosis, Meds, Bones and Age

2 Recommendations

If you are young, why risk a therapy that may be dangerous for more than 10 years when new therapies are coming? Don't buy in to the hysteria. My own doctor told me at 30 that the next time I fell I could break several bones. That was 7 years ago. My DEXA score is stable without bisphosphonate therapy. With ice & snow here in the winter, believe me I've had hard falls - and no new fractures.

Please comment - the following is an understanding I have built over five years of continuous web research on consumer, medical and journal sites. I am now at a stage where I educate my endocrinologist on new developments, to my advantage:

- Osteoporosis was never diagnosed prior to a bone's breaking without other injury before we had DEXA machines

- Osteoporotic breaks usually happened after age 50

- The World Health Organization, recognizing the high morbidity factor for broken hips in the elderly and the high cost of treatment and disability, set out an initiative to try to prevent osteoporotic fractures through pharmaceutical and other intervention

- Research on bisphosponates began both from this mission and due to the high population of potential patients (profitability for the pharma companies)

- Bisphosphonates were developed in conjunction with DEXA machines because the drug researchers had to have a way to measure a baseline density and any improvements

- DEXA results enable doctors to tell you your bone density at any age, GIVING A REASON to prescribe the drugs DEXA was developed to test

- Neither DEXA readings nor your doctor can say if you will suffer a fracture or when, creating an uncertain pool of lower bone density people with many years left to live

- Longest drug trials for bisphosphonates are under 10 years

- Bisphosphonates accumulate existing bone and decrease destruction of bone formed while you take them - they do not build bone faster or stronger (Shame on the FDA for allowing the Boniva ad with Sally Fields -- "builds strong, healthy bones" )

- Bone ages normally and older bone is replaced with new bone in a natural, daily process

- As you age the amount of new bone built decreases but old bone is removed at the same rate, causing loss in density and molecular stability, usually from age 30

- Anyone under 50 with a sub-optimal bone density reading does not necessarily have osteoporosis or osteopenia, these are diagnoses for post-menopausal women

- New drugs are coming to build bone

- If you are under 60 and have not had an osteoporotic fracture it may be best to wait for actual bone building drugs rather than begin the anti-resorptive therapies (boniva, fosamax, etc.) which are bioactive for years to follow, though usually at a sub-clinical level 1 year after stopping treatment

- Recombinant teriparatide is the only currently available bone building drug (Forteo) in the US and it retails at around $750 a month. You are advised to take it for 1.5 - 2 years.

- Recent journal studies suggest that vitamin D and calcium intake are the most critical factors and the cheapest regimens to follow

- In Europe, strontium ranelate has improved bone density but it is a heavier molecule than calcium and this skews the DEXA data, making it difficult to calculate the actual T-Score gain once therapy begins

- In America, you can purchase strontium citrate (a similar molecule with one Sr ion wheras strontium ranelate has two Sr ions) from health food stores but your doctor and radiologist will not know how to adjust the DEXA readings once you start this therapy

- Rare cases report increases in fragility fractures in patients taking the anti-resorptive therapies for more than 3 to 5 years

26 replies

Excellent and understandable and very, very helpful - thank you so much. My doc does not seem to have your clarity of thought or knowledge about this disease. You didn't mention exercise. Do you have anything to add to that aspect of our mutual struggle. My diagnosis is new and I want to take care of myself without pharmaceuticals if I can. Thanks again.

Thanks so much for your info. You answered some of my questions about women that are pre-menapausal like myself. I was having a hard time with taking the meds, because they all talked about post-menapausal women. My doctor just suggested that I take them because I had a fracture in my ankle. I am trying other things and leaving the meds along. With your information I do not feel crazy. Thanks so much.

karenwb2

What information do you have on Evista? Also do you take calcium seperate from Magnesium? How much magnesium do you take? I take magnesium citrate........500 mg at once.......should I space them out? I guess you were talking about only fosamax kind of drugs? Thank you so very much!!!

Great info! I am going to make a copy for my doc. My father was a doctor and when we discussed my osteroporosis, he said he thought my mother had it. I am large boned and about 25 pounds overweight with good muscle tone. Not the classic osteo gurl, but I score in the moderate/severe range on my DEXA. My dad said that bone loss is natural and I wouldn't have known I had osteoporosis without the scan. I'm 60 and never had a break yet, so I am definately going to try to go without the drugs. I took Fosomax and Boniva for a while and I maintained or scored lower each time I took a DEXA. I'm going to up the vitamins and exercise and see what my next scan will show. Thanks again for the cohesive report.
Sharon

To make your 'report' more valid, you need to site sources! It's not that I disagree with what you are saying but it's just so anti-med that it makes me suspicious. My endocrinologist is not the ignoramus you describe! I watched my paternal grandmother break her hip and end up dying in a nursing home. I watched my maternal grandmother shrink and end her life bent over. I see my mother shrunken and sitting in her wheelchair. THIS IS NOT THE RETIRED LIFE I WANT FOR MYSELF! I'm almost 61; was diagnosed 7 years ago after I had already lost 2" in height. DEXA Scans are a newer tool; so of course prior to them, women weren't diagnosed with Osteo until AFTER they broke a hip! Don't make DEXA Scan results out to be the tool that allows the drug companies to make huge profits at our expense. Your article has the wrong tone to it and this is what is bothering me. Of course women need to educate themselves and if they find that they know more than their osteo doc, then they need to find a new doctor who is more knowledgeable. My bone health is too fragile for me to assume that I can turn things around by taking health food store supplements. While it is true that the osteo drugs have but a 10 year history in this country, that does not mean that they are all bad and should be avoided entirely! Just my thoughts...from someone who was doing it all correctly and STILL ended up with osteoporosis.

Hi dearme - as for exercise, I was never very active and always (until recently) underweight. After a struggle to gain 10 pounds, I've put on 17 and have a normal-range BMI. I don't get to the gym much, but that is the missing feature - weight bearing exercise. But we all live within limitations. We do the best we can.

Hi karenwb2

I've had doctors begging me to get on the bisphosphonates... at 30! Also scaring me about premature ovarian failure, etc - all false alarms. You should definitely continue to seek doctor's opinions and knowledge. If your fracture doesn't heal, especially. But keeping informed through MedScape and other sources is my best reference. Initially I posted an inquiry on the Osteoporosis Foundation web site, and even at that time, the respondents - various osteo physicians - said that it wasn't clear if younger women with lower bone density really fit the diagnosis of osteopenia/porosis. Keep searching, and paying attention.

Chezkir:

I appreciate your analysis of the situation. As one of the unfortunate 10 year users Fossamax (now on holiday for 16 months) I would like to understand better your statement that the drug stays bioactive for years but usually at a sub clinical level one year after stopping. Do you have any data on the number of years this drug may stay active and what do you mean that it is bioactive only at a subclinical level. Do you know if this issue applies to all biophosphonates or just Fossamax. All but one (Forteo) of the drugs being sold is a biophos.
You are only 37 years old and I am 60. One of the reasons that I can't keep or make bone is I don't have enough estrogen. Which brings me back to my running theme that maybe low dose HRT is the way to go for those of use who are post menopausal.
You however do have estrogen and that is protecting your bones from fracture and should allow you to build bone with proper diet and exercise. Are you building bone? I am shocked that all these young people have osteo. Do you know the cause of your osteo? I exercise with a 25 year old who has osteo because her mother was a vegan and she did not feed her children milk products. Gloucester

Hi Southernlady

I don't know much about evista but there is a great web site run by Dr. Susan Orr of the University of Washington in Seattle that gives a good breakdown of current therapies, benefits and risks, and other information.

It is intended for medical students as Dr. Orr teaches at the University, but I think it is clear and understandable.

Good luck

Hi SharonG

One problem with fluctuating DEXA scores is that there is variance from machine to machine. IF you are scanned on different machines (esp Hologic versus Lunar) you may see differences that seem significant in only the course of time it takes to walk to the other machine.

It is hard to be patient and wait for 12 mos for the next scan to see if your treatments are working.

Best of luck - but the pharmaceutical you can afford and your soul can tolerate may be the best answer, along with an open mind and a refusal to let your docs gloss over your concerns. It is a balance.

Hi there heid

I agree completely with your concerns. I am researching the web sites I have been to over the years to put together a reference list as a new post.

I am only anti-meds for younger people. 61 is still young, but more in the range of age that the meds were designed and tested to treat.

No official osteoporosis drugs trials used pre-menopausal participants. The FDA approved labeling for all of them - including the Forteo I am fortunate to have an insurance company to help me buy - is labeled for use with post-menopausal women.

Keep searching and questioning. It's the only way to find the right path and solution for you.

Hi heid (post 2)

I totally empathise with your situation and concerns.

In addition to my earlier post, I'd like to say that I really like the Strontium Ranelate drug -- called Protelos by Servier -- that is not available here but fully approved in Europe.

If I could not take Forteo, I would try to find an endocrinologist who could help determine the correct DEXA readings and employ the over the counter version of this therapy - strontium citrate.

Here is a link to the manufacturer's web site. To see the published clinical data for Protelos, you have to tell the site that you are a medical professional. However, the results are commensurate with the bisphosphonate. Obviously, this is a newer drug, so the risk with its use is that it is less studied over time than the bisphosphonates.

http://www.servier.com/Miscellaneous/Login.aspx?ReturnUrl=%2fpro%2fosteopor osis%2fprotelos%2fprotelos.aspx%3fid%3d2163

Hi Gloucester

Actually no one knows the cause of osteo in younger women - mostly because the majority tested are older, or already have a suspect fracture. They don't randomly test the healthy population. A common theory is that, for most women, bone density is sub-optimal for most of their years prior to the age when an osteoporotic break would happen. When bone loss is critical for fractures, and when it is just a part of aging, is unclear. There is no magic age, but all prescribing labels and tests apply to post-menopausal subjects and patients.

When they first wanted me to take Fosamax, at 30, one doctor wanted me to sign a release that I would be on 2 types of birth control and agree not to try to get pregnant for 2 years after stopping treatment. I have not recently looked into the bioactivity, but I'll give it a shot. This was all becuase the drug, intended for post-menopause, was never subjected to the teratogenicity (birth defects tests) required of general-use drugs.

I seem to be building bone, yes, but have been on BCP since age 24. No one knows if artificial estrogen has the same effects long-term as natural. I also took strontium citrate for 18 months and over this period, my DEXA scores went up - but we don't have any idea how to calculate what is actual improvement and what is due to the heavier molecular weight of strontium versus calcium.

You may be interested in my post to heid, #2, discussing Protelos from Servier. But this drug is not available here and has a shorter testing profile than bisphosphonates.

All

One thing that comes to mind is that though it seems piddling - mineral and vitamin D supplements are essential, easy to take, and cheap.

My mother is 66, smokes, drinks, doesn't exercise and has a DEXA indicating osteoporosis. She quit Fosamax because she doesn't have insurance.

I don't disucss this topic with her because she can't bear discussions of managing her health.

AMAZINGLY, though, she once reported to me that her OBGYN said "my osteoporosis is beyond vitamin D and calcium."

Meaning, she misunderstood that the Fosamax she was prescribed is meant to be accompanied by vitamin D and calcium, but that her case was well beyond these supplements alone and required Fosamax.

So currently she takes no extra supplements and has cut her 3 glass a day milk intake due to high cholesterol. For sure this is not the outcome her OBGYN intended.

So the very least she can do, she is not doing. Of course, exercising, stopping smoking and limiting her drinking would also be big steps forward.

But not even taking the baseline supplements because of a misunderstanding?

Chezkir:
Glad to have read your posts. I am a 30-year old female just diagnosed with severe osteoporosis (-3.2 at spine, -2.2 at hip) with a recent stress fracture of the fibula (due to a non-traumatic cause). I know the cause of my osteoporosis: history of an eating disorder (anorexia), amenorhea, and low body weight. I am also a very small woman to begin with so probably have a lower overall bone mass. My doctor told me that it was imperative that I go on Fosamax (despite a history of a stomach ulcer and perhaps wanting children one day), as this would be the only effective treatment. I decided not to take it after doing my research.... My question is have you had any experience with nutritional therapy and working with a dietician? I feel at least I can start here since I definitely need help in this area. I have started the calcium and Vit. D but ofcourse I know by themselves, this won't be enough. I am a very active girl and always have been- so moderate exercise as a part of the therapy would not be a problem.
Thanks for reading!

Chezkir:
Are you a medical professional?

Chezkir,
Hi. You responded to me by accident I believe. I never mentioned not being able to afford medication or having fluctuating scores, but fyi I have been having my scan on the same machine for years. I have a DEXA every two years. I don't want more radiation than that. Between teeth, hip, and spine, I get enough radiation on a regular schedule.
SharonG

For 6 years my Dexa scans were on the same machine at the same hospital. The scores continued to show a steady decline in bone mass even though I was on Actonel for all 6 years plus Evista for 2 of those. The doc (my GP) then referred me to an endocrinologist because of the continued bone loss. The endo had me get a Dexa through HIS lab; the results were a match for the last one I had at the hospital through my gp. The last 3 Dexas at his lab show continual bone loss. So for me, going from one machine to another did not show any disparity in bone density scores.

I do think that younger women need to keep in mind the fact that these drugs were created to help post menopausal women with osteoporosis. If I was their age, I too might want to try to beef up my exercise, vitamin intake, make good food choices, etc. before trying any of these drugs.

"The Myth of Osteoporosis" has been discussed in other discussions on this web site. The author's premise is that we women don't have a disease and don't need drugs to rebuild bones. I took my first Dexa after it was discovered that I had lost 2" in height. "They Myth" says that loss of height must be some sort of vertebral malformation! The author doesn't go into any further explanation on 'vertebral malformation" but this statement left me shaking my head. My point here is that as women we have to educate ourselves in partnership with our doctors to find the best end result. And one size definitely does not fit all! Michele

Dear heid;

A "new" discovery is that it can be genetic which sounds like your case. I posted a discussion "Osteo and Gut Serotonin" which references this research and you should read. Will give you food for thought.

What a very smart, thoughtful discussion. We're not in the same danger zone -- I'm 63 and do have osteoporosis -- but frankly I was stunned to learn that they're pushing bisphosphanates on young women such as yourself with stable BDM. Thank you for the enlightening message! You've done us all a service.

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