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Osteoporosis Message Board


Osteoporosis Board Index


First of all, THANK YOU to all of you (especially DesertBloom) for such great research and information here.
I've been reading, reading for the past 2 days here and I've made up my mind to get off Fosamax. Forteo sounds pretty good too, so I'm not quite sure - Strontium or Forteo.

Anyways, I will be seeing my doctor next week to go over this with him but in the meantime can someone tell me - should I wait a period between quitting the Fosamax and starting Strontium? I don't think my doctor will know.

I see Fosamax can stay in your system for 10-20 yrs after taking it, so I'm not going to wait that long!:D

Has anyone made this switch before and if so how did you do it?

ETA I just looked up Forteo - and the first thing I see is that it causes bone cancer in animals!! eek!
Hi peppurr and welcome :wave: to the board. I've been taking strontium for over a year now. I took actenol for 2 months, but decided it wasn't something i wanted to continue with. I waited a month to start the strontium, but i did this on my own. My dr. wasn't familiar with strontium at the time, so he wasn't any help. Sorry i can't be more help. Take care...phyllis
Hi and welcome,Peppurr. I'm another strontium user (started about a month ago); I never used bisphosphonates but started the strontium immediately following an unsuccessful treatment with growth hormone. So far, no side effects from the strontium.
What I can tell you is that your doctor will try to steer you away from the strontium and push Forteo on you instead. Why? Because the vast majority of the medical profession remains blissfully ignorant about any non-pharmaceutical means of treatment. Also, as Phylwill (I think it was Phylwill) mentioned in a previous post, doctors feel they have to do "something" when you present with an osteoporosis diagnosis, and if they don't recommend something which is recognised as "the standard of care", they feel they're liable if you fracture something down the road. Right now, the "standard of care" is Forteo/Fosamax/Boniva etc. However, if you do an internet search on strontium and osteoporosis, you'll find some encouraging studies which your doctor has probably never heard about-none of mine had ( Phylwill mentioned a wonderful link in a previous post).
Whenever a doctor gives me that "standard of care" line about an osteo drug, I remind him/her that bloodletting was once a "standard of care" too ;) .
[QUOTE=phylwill1152;3244391]Hi peppurr and welcome :wave: to the board. I've been taking strontium for over a year now. I took actenol for 2 months, but decided it wasn't something i wanted to continue with. I waited a month to start the strontium, but i did this on my own. My dr. wasn't familiar with strontium at the time, so he wasn't any help. Sorry i can't be more help. Take care...phyllis[/QUOTE]

This is exactly why I posed the question here. I know my doctor won't have a clue. Perhaps I should see a naturopath dr.
Otoh, I have only been taking Fosamax for 3 months so you've given me some direction.
I phoned my pharmacist yesterday and told her I was quitting the F. I wanted to know if there was a weaning period before starting the S. She told me - "Do not quit until you have seen your doctor". Boy...they're all in this together aren't they. Also, I did ask my back specialist about whether to take S or F and he said definitely F.:mad:

By the way, one of my pilates instructors had osteoprenia. She is married to a naturopath dr. She told me about Strontium before I started the F. I am kicking myself for not finding this board beforehand. She actually reversed her osteoprenia with S & supplements.
I realize I have the osteoporosis of the spine but I'm 2.8 on the scale which is not that bad YET so I am definitely getting off this F.

Thank you very much Phyllis for responding!:)
I'll reply to you later Starfish - I'm off to pilates!
[QUOTE=starfish81;3244484]Hi and welcome,Peppurr. I'm another strontium user (started about a month ago); I never used bisphosphonates but started the strontium immediately following an unsuccessful treatment with growth hormone. So far, no side effects from the strontium.
What I can tell you is that your doctor will try to steer you away from the strontium and push Forteo on you instead. Why? Because the vast majority of the medical profession remains blissfully ignorant about any non-pharmaceutical means of treatment. Also, as Phylwill (I think it was Phylwill) mentioned in a previous post, doctors feel they have to do "something" when you present with an osteoporosis diagnosis, and if they don't recommend something which is recognised as "the standard of care", they feel they're liable if you fracture something down the road. Right now, the "standard of care" is Forteo/Fosamax/Boniva etc. However, if you do an internet search on strontium and osteoporosis, you'll find some encouraging studies which your doctor has probably never heard about-none of mine had ( Phylwill mentioned a wonderful link in a previous post).
Whenever a doctor gives me that "standard of care" line about an osteo drug, I remind him/her that bloodletting was once a "standard of care" too ;) .[/QUOTE]

I just had to look up bloodletting lol. When I see this doctor on Thursday, I will be totally armed with info. I really should get rid of my GP except I think they're all the same. How did we get to the point where we have to tell a doctor what treatment we should and should not have is beyond me. Thank goodness for the internet, I guess.

I probably would have continued on with this Fosamax but then my jaw started aching and I started to research and found "jaw death" :eek:

I don't know which poster it was but I totally concur with her about aging and normal bone thinning and the Pharmaceutical Industry's response. I can tell now that my mother probably has osteo of the spine even though she has never been diagnosed or received treatment. She is 84 and eats very healthy. A few years ago she fell and broke her leg and it healed properly and quickly. If she was on Fosamax I now believe there would have been complications.

I'm excited about taking Strontium. I have also found a physiotherapist who specializes in pilates exercises for osteo. I'm very encouraged at this point.

Thanks you both for responding!:) I really appreciate your input. When is either of you scheduled for another bone scan? I'd very interested in learning your results from the Strontium.
Hi Peppurr: Thanks for your kind words-you're really sweet and I'm glad I could help. :) Good luck with your decisions on treatment!!!
[QUOTE=DesertBloom;3244973]Hi Peppurr: Thanks for your kind words-you're really sweet and I'm glad I could help. :) Good luck with your decisions on treatment!!![/QUOTE]

Hi and thank you again, :) DB!
Hi peppurr, I had a DEXA in June and had improvement in both total hip and lumbar spine scores. It showed a 3.5% increase in each since the previous one a year before. I don't know exactly how much gain i got since no adjustments were made for the strontium use. I did stop taking it for 30 days prior to the scan at the request of the dr. Since drs. don't reccommend using it, the labs don't have the necessary numbers to make the adjustments for an accurate score. It could be anywhere from a 10-50 % overestimate, but even with that said i still had improvements that i can build on.

When i go to see our dr. i always go armed with new info that is pertinent to my health. Dr. are so busy that i feel its my job to go in informed and make the best use of the time i have with him.. My dr. thanks me for bringing him info that he doesn't have the time or inclination to research. He's young, so i think he's more open to his patients telling him what they want. We have to be advocates for our own health and be bold enough to tell the dr. how we want to be treated.

I'm interested in hear more about the pilates for osteo. have a good day..take care...phyllis
[QUOTE=phylwill1152;3245947]Hi peppurr, I had a DEXA in June and had improvement in both total hip and lumbar spine scores. It showed a 3.5% increase in each since the previous one a year before. I don't know exactly how much gain i got since no adjustments were made for the strontium use. I did stop taking it for 30 days prior to the scan at the request of the dr. Since drs. don't reccommend using it, the labs don't have the necessary numbers to make the adjustments for an accurate score. It could be anywhere from a 10-50 % overestimate, but even with that said i still had improvements that i can build on.

When i go to see our dr. i always go armed with new info that is pertinent to my health. Dr. are so busy that i feel its my job to go in informed and make the best use of the time i have with him.. My dr. thanks me for bringing him info that he doesn't have the time or inclination to research. He's young, so i think he's more open to his patients telling him what they want. We have to be advocates for our own health and be bold enough to tell the dr. how we want to be treated.

I'm interested in hear more about the pilates for osteo. have a good day..take care...phyllis[/QUOTE]

Hi Phyllis! Well now...isn't that encouraging!:bouncing: Thank you for telling me. I'm not sure what DEXA so I will have to look that up. With our medical system I am allowed a bone scan every 2.5 yrs. At the start of Fosamax (11 wks ago) my doctor told me that it would be 3 yrs because that's how long it takes the Fosamax to work. I'm going to see him on Thursday and I have a LIST.:) You're right. We have to be advocates & tell the dr. I've been doing that for quite sometime but I thought I'd go with him this time because I hadn't researched.grrrrr. My dr is a few yrs older than me and I think he's losing interest. Our med system is all about maintenance and no prevention whatsover - so what ever Michael Moore thinks - baloney.:rolleyes:

I'm going to make an appt to see a naturopath dr (the husband of one of my pilates instructors).

And since you mentioned the pilates - there are some exercizes that will actually stretch your spine and supporting muscles, however, there are many that will make the situation worse. Two yrs ago when I had osteopenia, my back specialist recommended pilates. Unfortunately, I have just found out in the last 3 months that I may have made things worse. Most pilates instructors have no training for osteo. Last month, I found this wonderful trained physiotherapist who now devotes her practice to osteo, back injuries etc. She was mortified when she saw what I had been doing. I don't know if you know anything about pilates so will simply say that when you have spinal osteo, the best exercizes are performed while you're on your stomach.Eg:

1.[B]swimming[/B]; lying on your stomach, lifting your head off the floor and do a breast stroke (hands together/palms down, reach arms straight forward, to the side and elbow in to the start. Keep head straight. 2. [B]Leg stretch -[/B] lying on your stomach with small pillow under your forehead to keep aligned, lift one leg a few inches, and reach hip & leg backwards as much as you can, put leg down and lift other leg repeat; 3.[B]Shell stretch[/B] or [B]Child's pose[/B]- get down on your knees, sit on your back legs, reach arms up & forward and curl over, head to the floor. [B]4. Sphinx[/B] lay on stomach, palms down in front of shoulders. Push up so that only your knees and lower legs are on the floor. This is good for your back and weight bearing for your wrists.

Start off doing these - just a couple a day. If anything hurts for goodness sakes stop. These stretches should make you feel good. If they're not, then you're not doing it right. It's kind of hard to explain.

I also do some exercizes while I'm sitting at the computer. I have a link for then but don't know if I'm allowed to post it.
Peppurr: Relax; you wouldn't have made your spinal bone density worse by doing Pilates. Probably the biggest "danger" of Pilates is injuring your low back by improperly performing an exercise. That's wonderful that you've found an instructor who devotes her energies to learning the routine from the standpoint of osteo.

My lumbar BMD is -3.4 and I do all kinds of exercises (including Pilates) in hopes of strengthening my back muscles and improving my posture. I downhill ski the black diamonds, cycle, lift weights and hike too.

People (even some doctors) hear my BMD score and look at me with horror...it's as if they think I'm going to crumble into a pile of dust right before their eyes. Touch wood, I've had some good falls and never fractured anything yet, although over the past few years I've dislocated a shoulder, torn knee cartilage and required surgery, and am currently battling tennis elbow and a couple of painful overused knees (what we do to keep in shape :( ). I've been reading these boards since July, and have come to the conclusion that a low BMD score isn't a good indicator of fracture risk.

It sounds as if you've thought this out and are taking some positive steps. Good for you! Do keep us posted as to how your doctors appointment goes.
P.S. I agree with you 100% about our health-care system, although it's really not much better across the border either.
[QUOTE=starfish81;3246495]Peppurr: Relax; you wouldn't have made your spinal bone density worse by doing Pilates. Probably the biggest "danger" of Pilates is injuring your low back by improperly performing an exercise. That's wonderful that you've found an instructor who devotes her energies to learning the routine from the standpoint of osteo.

My lumbar BMD is -3.4 and I do all kinds of exercises (including Pilates) in hopes of strengthening my back muscles and improving my posture. I downhill ski the black diamonds, cycle, lift weights and hike too.

People (even some doctors) hear my BMD score and look at me with horror...it's as if they think I'm going to crumble into a pile of dust right before their eyes. Touch wood, I've had some good falls and never fractured anything yet, although over the past few years I've dislocated a shoulder, torn knee cartilage and required surgery, and am currently battling tennis elbow and a couple of painful overused knees (what we do to keep in shape :( ). I've been reading these boards since July, and have come to the conclusion that a low BMD score isn't a good indicator of fracture risk.

It sounds as if you've thought this out and are taking some positive steps. Good for you! Do keep us posted as to how your doctors appointment goes.
P.S. I agree with you 100% about our health-care system, although it's really not much better across the border either.[/QUOTE]

OK....got my feet up....am relaxing!:D And I've been freaking out because of my -2.8! Not any more!!!:jester: Thanks sooo much for your post! I remember the first time I found out I had graduated to osteoporosis. The doctor looked at me like I had the plague - all doom and gloom so maybe that's where I'm coming from!

Since reading this board, I have a different attitude. My eyes actually popped out when I read about your fitness regime! KUDOS to you! I wish you well with your tennis elbow and knees!

I'm still not sure about the low BD score and fractures though. I had never broken a bone in my life until 2 yrs ago. In Nov '04 I had a freak accident where I got hit in the head by one of those old-fashioned garage doors without a sensor. Got slammed to the ground, and ended up with a hairline fracture in one foot. One year later, I was crossing a street and got hit by a car. Knocked over and broke my leg (another hairline fracture) and nose.

Hard to know for sure, but it could be the bones broke because of thinning. I am otherwise a very healthy person.

Happy Thanksgiving to you!!
Glad to be of help Peppurr; that's what these boards are all about :) . You had mentioned that you were uncertain what to make of your recent fractures, i.e. could they be due to low BMD. Based on my own experience with low BMD, I think I can shed some light on this for you too.

First of all, the true definition of osteoporosis (not the current definition-brought to us courtesy of the pharmaceutical industry-but the original one) includes a history of low impact fractures. A recent poster to these boards said she broke an ankle jumping from a height of 1 foot. That's a low impact fracture. By contrast, your fractures both sound pretty high-impact; i.e. even someone with "normal" BMD would, in all likelihood, have suffered the same fate given the circumstances.

Secondly, most DEXA machines give a lumbar BMD reading of a single number, in your case -2.8. When I was having all my readings done, I assumed that that # was indicative of the whole spine, and probably the whole body too. Then I went to an age-management clinic in the US because I wanted to try growth hormone injections in hopes of increasing my BMD. At that time, my BMD as taken in Canada was -2.9. Well, these places have newer DEXA machines (hey, they even print out in colour :cool:) that print out each individual lumbar vertebra. And guess what? I was indeed -2.9......in 2 out of 5 vertebrae! The others were better-not ideal, but something like -1.9. And here I was thinking all these years that my whole spine is disintegrating!

And, this machine also gave a "total body" BMD, which I assume is an average of all bones. Mine was -0.2! So I asked the doctor there about this, and he confirmed that the lumbar region is usually the lowest in density so that's why they use it. Translate: having "osteoporosis" of the lumbar region doesn't necessarily mean you have it everywhere else.

There are some unfortunate souls on these boards who do have true osteoporosis (i.e. have suffered low impact fractures and vertebral compression) and have to be careful in their daily activities as a result. My heart goes out to them, and I hope that a safe and effective remedy is soon available for them.

Peppurr, I hope this info has been reassuring to you. You've got a "list" for your doctor....go for it girl ;) !
I'll put in my two cents as one of those with "true" osteoporosis. My lumbar t score was an unimpressive -2.6. I fractured five vertebrae doing absolutely nothing. Both my parents had compression fractures and I was told that was a far more accurate predictor of my future. Dexa scans are of only limited use. There is so much variation from one machine to the next, compounded with conditions which can obscure the results (i was told my score was so "good" because of my arthritis), you've got to take your results with a rather sizable grain of salt. Good luck!
[B][/B][QUOTE=starfish81;3246984]

***respectfully snipped for space***

First of all, the true definition of osteoporosis (not the current definition-brought to us courtesy of the pharmaceutical industry-but the original one) includes a history of low impact fractures. A recent poster to these boards said she broke an ankle jumping from a height of 1 foot. That's a low impact fracture. By contrast, your fractures both sound pretty high-impact; i.e. even someone with "normal" BMD would, in all likelihood, have suffered the same fate given the circumstances. [B]Very true. You know when my doctor referred to my fractures, it was like "hmmmm, serious stuff here". And then when I went for the scan, the technician said the same thing as you![/B]

Secondly, most DEXA machines give a lumbar BMD reading of a single number, in your case -2.8. When I was having all my readings done, I assumed that that # was indicative of the whole spine, and probably the whole body too. Then I went to an age-management clinic in the US because I wanted to try growth hormone injections in hopes of increasing my BMD. At that time, my BMD as taken in Canada was -2.9. Well, these places have newer DEXA machines (hey, they even print out in colour :cool:) that print out each individual lumbar vertebra. And guess what? I was indeed -2.9......in 2 out of 5 vertebrae! [B]Very, very interesting!![/B]The others were better-not ideal, but something like -1.9. And here I was thinking all these years that my whole spine is disintegrating! [B]This is exactly how I was feeling![/B]

And, this machine also gave a "total body" BMD, which I assume is an average of all bones. Mine was -0.2! [B]Wow![/B]So I asked the doctor there about this, and he confirmed that the lumbar region is usually the lowest in density so that's why they use it. Translate: having "osteoporosis" of the lumbar region doesn't necessarily mean you have it everywhere else.[B]Geez - why can't OUR doctors tell us this?!!:mad: Not one bit of reassurance from mine! [/B][/QUOTE]

This [U]is[/U] very reassuring. Thank you for taking the time to post this for me. This is unbelievable. Ya know, I have always been under the impression that when a person with osteopororis has a fall and fractyre, the bone is breaking first and therefore causing the fall. Yes...those fractures of mine were as a direct result of the fall. No question! Probably only a hairline because of thinning bones. Sheesh!

Thank you for making me feel a whole lot better today!
[QUOTE=turtlelady;3247063]I'll put in my two cents as one of those with "true" osteoporosis. My lumbar t score was an unimpressive -2.6. I fractured five vertebrae doing absolutely nothing. Both my parents had compression fractures and I was told that was a far more accurate predictor of my future. Dexa scans are of only limited use. There is so much variation from one machine to the next, compounded with conditions which can obscure the results (i was told my score was so "good" because of my arthritis), you've got to take your results with a rather sizable grain of salt. Good luck![/QUOTE]

Thanks for stopping by and giving your input turtlelady! I wish I had some history but I was adopted and unfortunately have nothing.

I noticed that about the machines when I was told that I'd have to have another scan in 3 yrs [U]on the same machine[/U] Who knows if that machine will still be there or maybe I'll move!! This is all bordering on insanity.:D

Five fractures!! That must have hurt! Poor you!
Yes, thank-you to Turtlelady (ouch, I've heard vertebral Fx's are painful) for sharing this info. This lends credibility to the idea that T-scores are not necessarily a predictor of fracture risk. Turtlelady, I hope that something truly safe and effective will soon become available to help you :angel: ! Sending positive thoughts your way!
Thanks to you both for your good wishes. Actually, the first three I scarcely noticed, other than a persistent low-grade back ache. The fourth brought me to the ER in screaming agony. My mom probably broke every bone in her back and was totally mobile until she died. Other than the appearance, which was god-awful, it just never bothered her.I had fusion surgery (failed) in 2006 and am headed back for a "revision" (which seems to be the euphemism for fixing another surgeon's screw-up), probably early next year. Meanwhile, doing Forteo and walking couple hours a day. My orthopedist says he's sent people to France for strontium ranelate post Forteo. (Nice, if you can afford it!). Interestingly, nobody in my family has broken a hip.
Bless you all for your kindness! Good luck to us all.
Hi Everyone!
Well...I had the doctor's appt today. hehe. He told me I'm the best osteo patient he has - (thanks to all of YOU!)

I started off by telling him that my jaw started aching badly and he pretty much interrupted me and said "get off it". Blew the wind out of my sail!:D
He told me that when any patient of his has any side effect - he gets them off it. I would guess he just gives them another of the same family. I didn't ask.

He didn't know anything about Strontium. Said he's heard of it but hasn't researched it. I asked him how long I should wait before going on Strontium and he said to be safe - 2wks to get out of your bloodstream but preferably a month. So I will wait a month. Note, he's saying this even though he doesn't know anything about it.

Interestingly enough, when I was waiting for the doctor, I picked up a medical magazine and flipped through it. Low and behold they had a 4 pg article on osteo, Actonel, Fosamax, Forteo and Strontium Retelate. They are working to approve the S Retelate in Canada. They figure this S Retelate will replace everything else.

Anyways, when I was talking about the Strontium and when he said he hadn't researched it - I handed him the article!:D

I also asked him about urine calcium tests and he said no. Sorry, I can't remember why - it was complicated and I had mind overload at that point.

In the article they also talked about weight bearing exercizes. They quoted a Doctor at McMasters University and he said while it's good to exercize it's not going to make much difference in your bone mass. That's the first time I've heard anything like that! Even my doctor today was stressing the walking which seems to be the general consensus. Also, in this article, they mentioned the possible side effect of jaw disease with Fosamax. They said it was extremely rare with only 0.8% getting it. I'm now thinking this magazine was put out by a pharmaceutical company. I should have checked.

Boy you sure can get conflicting info. I was just reading Karin's thread and she's saying a Doctor at the Mayo says you can take Boniva and Strontium at the same time!:confused:

I told my doctor I will start the Strontium Citrate in a month and try that for 3 yrs which is when I am due for another scan. I said maybe by that time Strontium Renelate will be available.
Wow starfish - I'm impressed with your exercise regime. I decided I was too scared to ski so did cross country skiing last winter but I wasn't a very good skier in the first place - we don't have much snow in the UK! I manage to get to the gym 3-4 times a week and use the cross trainer which is like cross country skiing I think. Do you know if this is good for building bone density - I know cross country skiing is but until someone makes skis that go over grass I can't do much of that here! My hips were in the osteopenia range and spine -2.8. I think you are right about fracture risk and density not being the same thing. I crashed over last winter on ice cross country skiing and did not break anyway - it is a bit confusing. I am on Fosamax (not happy about it) but I won't be offered anything else (have posted another message on that subject). I think I will look into Pilates. Good luck





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