Turquoise
05-16-2007, 11:35 AM
Hello fellow bone challenged:
I just got results from my yearly Dexa and wanted to share them with you. First, a little background is necessary.
I wasf diagnosed in 2002 with severe osteo,-3.4 in both hips and back. I never had a fx or any other risk factors except heredity. I was put on Fosamax, told to take calcium and have my next dexa in 18 months. Well, it scared the hell out of me. I’ve always been strong, athletic and healthy and this threw me for a loop. I immediately started on calcium citrate in addition to dietary calcium and power walked almost every day.
My next dexa was worse. My GP sent me to an Endo who did another dexa on her machine and said it actually had improved. (But I am not sure because all dexa machines are different.) She just told me to take the Fosamax and come back in a year. (I had a battery of blood and lab work to make sure there were no other causes for the osteo.)
Then I started having kidney infections which turned out to be a stone. Seems I was taking too much supplementary calcium and the endo told me to just do dietary.
Fast forward to the next year’s dexa which was worse! What did the Endo do, just said take the Fosamax and come back in a year. This is when I insisted on seeing her again. She had just come back from a conference where they were rethinking the numbers on Vitamin D and I was on the low side. Now, she added 50000units of vitamin D once a week.
Another year passes and I have another Dexa which was worse again!!! (Here is a tip for all of you. Insist on getting the results of your Dexa called to you before your next appt. This way you are ready when the results aren’t what you thought they’d be.)
I started researching other treatments before my appt. which was good because she wanted me to start Forteo. I agreed reluctantly. But I decided to look around the net a bit more before I started it. I found the book Myth of Osteoporosis and my life changed. The fear was gone. I realized I was not as much as risk for FX as others with the problem. Why should I put more drugs into my body just so I may not break a hip at 85. My mother has severe osteo and she broke her hip at 85. At 91 she walks with out aids and doesn’t have a hump.
I took my self off the Fosamax last June since it wasn’t helping anyway. After 8 weeks off, the horrible pain I had experienced for 2 years in my neck and shoulders dissipated. I started Curves in August which has resistance exercises and weight bearing on the rest stations. I take calcium citrate plus the additional vitamin D.
Had my dexa on Monday. Just got the message from the tech who told me my back has improved and my hips stayed the same (she didn’t give any numbers). So, when I go for my appt. in 3 weeks it may be my last. I haven’t decided. I will not take any more osteo meds until they come up with more proof that bone mineral density it THE major factor in bone strength. I believe they should do a base line dexa on women at the age of 30. This way we would have better understanding of bone strengh and baseline scores.
A decision like I have made comes down to your personal health history. Many health issues contribute to osteoporosis. If you have low impact or no impact FX’s then you have to make different decisions regarding medications and procedures.
I will let you know what my Endo says when I tell her I’m not on meds. I may bring her my issue of The Myth of Osteo. I think she would benefit from it.
Thanks for listening to my story.
Turquoise
I just got results from my yearly Dexa and wanted to share them with you. First, a little background is necessary.
I wasf diagnosed in 2002 with severe osteo,-3.4 in both hips and back. I never had a fx or any other risk factors except heredity. I was put on Fosamax, told to take calcium and have my next dexa in 18 months. Well, it scared the hell out of me. I’ve always been strong, athletic and healthy and this threw me for a loop. I immediately started on calcium citrate in addition to dietary calcium and power walked almost every day.
My next dexa was worse. My GP sent me to an Endo who did another dexa on her machine and said it actually had improved. (But I am not sure because all dexa machines are different.) She just told me to take the Fosamax and come back in a year. (I had a battery of blood and lab work to make sure there were no other causes for the osteo.)
Then I started having kidney infections which turned out to be a stone. Seems I was taking too much supplementary calcium and the endo told me to just do dietary.
Fast forward to the next year’s dexa which was worse! What did the Endo do, just said take the Fosamax and come back in a year. This is when I insisted on seeing her again. She had just come back from a conference where they were rethinking the numbers on Vitamin D and I was on the low side. Now, she added 50000units of vitamin D once a week.
Another year passes and I have another Dexa which was worse again!!! (Here is a tip for all of you. Insist on getting the results of your Dexa called to you before your next appt. This way you are ready when the results aren’t what you thought they’d be.)
I started researching other treatments before my appt. which was good because she wanted me to start Forteo. I agreed reluctantly. But I decided to look around the net a bit more before I started it. I found the book Myth of Osteoporosis and my life changed. The fear was gone. I realized I was not as much as risk for FX as others with the problem. Why should I put more drugs into my body just so I may not break a hip at 85. My mother has severe osteo and she broke her hip at 85. At 91 she walks with out aids and doesn’t have a hump.
I took my self off the Fosamax last June since it wasn’t helping anyway. After 8 weeks off, the horrible pain I had experienced for 2 years in my neck and shoulders dissipated. I started Curves in August which has resistance exercises and weight bearing on the rest stations. I take calcium citrate plus the additional vitamin D.
Had my dexa on Monday. Just got the message from the tech who told me my back has improved and my hips stayed the same (she didn’t give any numbers). So, when I go for my appt. in 3 weeks it may be my last. I haven’t decided. I will not take any more osteo meds until they come up with more proof that bone mineral density it THE major factor in bone strength. I believe they should do a base line dexa on women at the age of 30. This way we would have better understanding of bone strengh and baseline scores.
A decision like I have made comes down to your personal health history. Many health issues contribute to osteoporosis. If you have low impact or no impact FX’s then you have to make different decisions regarding medications and procedures.
I will let you know what my Endo says when I tell her I’m not on meds. I may bring her my issue of The Myth of Osteo. I think she would benefit from it.
Thanks for listening to my story.
Turquoise
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salster3365
05-16-2007, 01:42 PM
Thanks for all the great information. I am currently taking Fosamax and will be on it for a year in Sept, however, it scares the heck out of me. I have been healthy, active, etc...lifting weights most of my life. I am also the result of heredity as my mom had the hunch back in her 70's. The Myth of Osteo really helps put things in persepctive. Please keep us posted....
osteoblast
05-16-2007, 05:27 PM
Turquoise- Hi! If you don't mind sharing, what is your age? I think age is a big factor in the decision about what to do.
Turquoise
05-16-2007, 06:20 PM
Osteoblast:
I'll be 62 in June. And I read somewhere that you lose most of your bone in the 10 years(?) after menopause. I'm over that 10 year point by a couple of years. I also read that if there is a medical cause for your osteoporosis, ie: steriod use, chemotherapy, over use of alcohol, eating disorder, etc., you may have more of a chance of fractures than those with just a genetic disposition. Of course, there is so much information out there and who knows what is true. What is true today may not be tomorrow. That, along with the fact we all bring a different medical history into the problem makes treating it very difficult.
Turquoise
I'll be 62 in June. And I read somewhere that you lose most of your bone in the 10 years(?) after menopause. I'm over that 10 year point by a couple of years. I also read that if there is a medical cause for your osteoporosis, ie: steriod use, chemotherapy, over use of alcohol, eating disorder, etc., you may have more of a chance of fractures than those with just a genetic disposition. Of course, there is so much information out there and who knows what is true. What is true today may not be tomorrow. That, along with the fact we all bring a different medical history into the problem makes treating it very difficult.
Turquoise
greentree
05-16-2007, 07:54 PM
I enjoyed your Osteoporosis Story. I stopped taking Actonel after about 8 months and the burning pain in my stomach went away. I go for my next Dexa this fall and will be interested to see what my numbers are. I also go to Curves 3 times a week and hope that it's helping.
Rosegarden
05-16-2007, 09:39 PM
Turquoise, thanks for your story. It's helpful to know and understand that others are going through the same things. You are doing a good job keeping track of your health and doing the most you can to help yourself. I admire you for that!
I have seen Myth of Osteoporosis mentioned several times, but I'm afraid to read it. I'm afraid it will say osteoporosis is a natural part of aging and we should avoid the dangerous drugs which doctors recommend. Is that it?
I have seen Myth of Osteoporosis mentioned several times, but I'm afraid to read it. I'm afraid it will say osteoporosis is a natural part of aging and we should avoid the dangerous drugs which doctors recommend. Is that it?
Turquoise
05-16-2007, 10:19 PM
The Myth of Osteoporosis was written by a woman whose teenage daughter was diagnosed with osteoporosis after a fracture. Gillian Sansone is a healthcare practioner in Australia and decided to research the diagnosis as it pertained to her family. There were quite a few fractures among her relatives.
She found out the treatment of osteo is very new and many of the treatment options were instituted by the drug companies. They were the ones that invented the Dexa Scan and put them into doctor's office. The definition of osteoporosis was changed. They even made a new conditon called osteopenia.
I didn't stop the drugs because of the book. All it did for me was make me see why my problem was not a bad as others and that there are other options for me. If I had low impact fractures and medical conditions that may make the osteo worse I would take the medications.
There are some basic questions she has brought up that need to be addressed by the medical community and drug companies. The field of treating osteo is very new so we can expect changes and new remedies in the future.
The book took the fear out of the diagnosis for me.
Turquoise
She found out the treatment of osteo is very new and many of the treatment options were instituted by the drug companies. They were the ones that invented the Dexa Scan and put them into doctor's office. The definition of osteoporosis was changed. They even made a new conditon called osteopenia.
I didn't stop the drugs because of the book. All it did for me was make me see why my problem was not a bad as others and that there are other options for me. If I had low impact fractures and medical conditions that may make the osteo worse I would take the medications.
There are some basic questions she has brought up that need to be addressed by the medical community and drug companies. The field of treating osteo is very new so we can expect changes and new remedies in the future.
The book took the fear out of the diagnosis for me.
Turquoise
tulsatime
05-17-2007, 12:10 AM
Turquoise,
Thank you so much for sharing your story. Yes, they should start a baseline at 30 years of age. Take care and I wish you the best of health!
Thank you so much for sharing your story. Yes, they should start a baseline at 30 years of age. Take care and I wish you the best of health!
glowing4
05-17-2007, 08:11 AM
Wow, Turquoise, I applaud you! Women have got to start getting some perspective on this whole issue and stop being scared into taking things that are harming their bodies more than helping. "The Myth of Osteoporosis" as well as my own research saved my sanity several years ago. I am truly, truly amazed that the drug companies have turned this into such a blazing issue to the point that women are scared to death. One has to step back and gain some reality. If women post menopause are in such grave danger than why were our grandmothers not crumbling in the streets before all these drugs came on the market?? And, how many 50 and 60 year old women do you see walking around in casts? And, with the horrible reports now coming out about HRT does it not make sense that the drug companies had to find something else for us to worry about?
Please do not think I am an anti drug fanatic. Traditional medicine is my first choice for myself and my family. I fully understand and most appreciate that drugs are responsible for saving thousands of lives. However, I do believe that women's health care is appalling when it comes to women in mid-life. I think we are easy targets for fear and that fear has caused tremendous suffering both emotionally and physically.
I do have mild osteoporosis and I was encouraged and even yelled at to take the drugs. Each time I refused as I kept reading more and more about them. Did I really want a plastic like substance surrounding my bones? Did I really want a drug to stop making new bone and just surround old bone? Were the experts right when they were saying that ten years from the start of the drugs that bones could actually be more fragile as inside that casing they were weaker? Given my dental history did I really want to face another extraction and end up having part of my jaw cut away as the bone would not heal due to the drugs?
So, what did I do? I started taking strontium and working out with weights. And, I started loading up on calcium - doctors orders which I did follow! Wrong as far as the calcium goes. I will post that on another board. Suffice it to say that I am not in the midst of horrible kidney stones requiring lithotripsy on Tuesday and the painful passing of the pieces now.
We have got to be responsible about our health care and we have got to demand answers or research on our own. The status quo or the "in" thing does not fit every woman and sometimes not even a majority of them! I am terribly angry that I am in the situation I am in now. It need never have happened. I am angry that the medical community and every print or TV ad scared me to death about osteoporosis. Had I used my common sense and not feared I would have been better off both emotionally and physically.
Thank you for letting me vent. I am just like all of you - mid-life, worried at times, scared at times, and wanting to enjoy life. But, this whole experience has taught me that sometimes we need to say no, we need to question, and we need to know our bodies and do what what is right for us.
glowing4
Please do not think I am an anti drug fanatic. Traditional medicine is my first choice for myself and my family. I fully understand and most appreciate that drugs are responsible for saving thousands of lives. However, I do believe that women's health care is appalling when it comes to women in mid-life. I think we are easy targets for fear and that fear has caused tremendous suffering both emotionally and physically.
I do have mild osteoporosis and I was encouraged and even yelled at to take the drugs. Each time I refused as I kept reading more and more about them. Did I really want a plastic like substance surrounding my bones? Did I really want a drug to stop making new bone and just surround old bone? Were the experts right when they were saying that ten years from the start of the drugs that bones could actually be more fragile as inside that casing they were weaker? Given my dental history did I really want to face another extraction and end up having part of my jaw cut away as the bone would not heal due to the drugs?
So, what did I do? I started taking strontium and working out with weights. And, I started loading up on calcium - doctors orders which I did follow! Wrong as far as the calcium goes. I will post that on another board. Suffice it to say that I am not in the midst of horrible kidney stones requiring lithotripsy on Tuesday and the painful passing of the pieces now.
We have got to be responsible about our health care and we have got to demand answers or research on our own. The status quo or the "in" thing does not fit every woman and sometimes not even a majority of them! I am terribly angry that I am in the situation I am in now. It need never have happened. I am angry that the medical community and every print or TV ad scared me to death about osteoporosis. Had I used my common sense and not feared I would have been better off both emotionally and physically.
Thank you for letting me vent. I am just like all of you - mid-life, worried at times, scared at times, and wanting to enjoy life. But, this whole experience has taught me that sometimes we need to say no, we need to question, and we need to know our bodies and do what what is right for us.
glowing4
montesflus
05-17-2007, 11:01 PM
GLOWING4 :
I applaud you and salute you.
I was not quite clear about the statement you made about you're ''NOT'' having kidney stone problems. Does this mean that you DID have a stone which needed to be dissolved and are now having pain passing the pieces that were left over?:dizzy:
I too am not taking any of the osteo meds, but I AM on calcium citrate, together with vit d and magnesium. Which calcium supplements were you on? Of all the calcium supplements available, it appears that ''calcium citrate'' seems to be absorbed into the body easier than, say, ''carbonate'' or the others. Studies have shown that the ''calcium citrate'' - as opposed to other kinds of calcium - seems to produce far fewer instances of kidney stones than other calcium supplements.
I'm not taking Strontium Citrate yet, but I'm thinking about it. I do walk 1-2 hrs daily, lift moderate weights and, most important, try to keep a positive attitude. My osteo numbers were not all that bad - -2.2 (back) and -2.5 (dual femur). I also believe that ''bone mineral density'' is not necessarily the ONLY pointer to determine bone strength! WE NEED DIFFERENT TESTS FOR THAT - hopefully these may be available, soon.
Hang in there, and best of luck.:D
I applaud you and salute you.
I was not quite clear about the statement you made about you're ''NOT'' having kidney stone problems. Does this mean that you DID have a stone which needed to be dissolved and are now having pain passing the pieces that were left over?:dizzy:
I too am not taking any of the osteo meds, but I AM on calcium citrate, together with vit d and magnesium. Which calcium supplements were you on? Of all the calcium supplements available, it appears that ''calcium citrate'' seems to be absorbed into the body easier than, say, ''carbonate'' or the others. Studies have shown that the ''calcium citrate'' - as opposed to other kinds of calcium - seems to produce far fewer instances of kidney stones than other calcium supplements.
I'm not taking Strontium Citrate yet, but I'm thinking about it. I do walk 1-2 hrs daily, lift moderate weights and, most important, try to keep a positive attitude. My osteo numbers were not all that bad - -2.2 (back) and -2.5 (dual femur). I also believe that ''bone mineral density'' is not necessarily the ONLY pointer to determine bone strength! WE NEED DIFFERENT TESTS FOR THAT - hopefully these may be available, soon.
Hang in there, and best of luck.:D
glowing4
05-18-2007, 07:55 AM
Monteflus,
Yes, I did have a very large kidney stone that needed lithotripsy (blasting of the stone with sound shock waves) and am now passing pieces of that stone - painful at times. I also have about four other small ones.
Thank you for your kind words and for sharing with me. I agree that calcium citrate seems to be the one to take. Unfortunately, the calcium I was taking was a combination of calcium carbonate/citrate/malate. It also has magnesium and Vitamin D. One woman that I speak to on another board suggests that we actually need more magnesium than calcium. It does get confusing doesn't it!
It sounds like you are doing all of the right things and I applaud you too. I think that in the long run it will be the far more healthy thing. During all of this kidney stone attack I have stopped taking anything at all except for a daily vitamin so that my body can right itself again and so not to interfere with my treatments. Once this is over though I will go back to my strontium.
Thank you for sharing and good for you!
glowing4
Yes, I did have a very large kidney stone that needed lithotripsy (blasting of the stone with sound shock waves) and am now passing pieces of that stone - painful at times. I also have about four other small ones.
Thank you for your kind words and for sharing with me. I agree that calcium citrate seems to be the one to take. Unfortunately, the calcium I was taking was a combination of calcium carbonate/citrate/malate. It also has magnesium and Vitamin D. One woman that I speak to on another board suggests that we actually need more magnesium than calcium. It does get confusing doesn't it!
It sounds like you are doing all of the right things and I applaud you too. I think that in the long run it will be the far more healthy thing. During all of this kidney stone attack I have stopped taking anything at all except for a daily vitamin so that my body can right itself again and so not to interfere with my treatments. Once this is over though I will go back to my strontium.
Thank you for sharing and good for you!
glowing4
Olivette
05-24-2007, 01:00 AM
Turquoise....just wanted to ask if you know what your blood calcium levels are because both kidney stones and osteoporosis are classic signs of hyperparathyroidism and around the early 60's is when the majority of people are diagnosed. If this is the caused of your osteo, no drug like fosamax would help as long as you have a parathyroid adenoma. You might want to read about this disease on parathyroid.com if your calcium levels are above normal. liv
Turquoise
05-24-2007, 08:30 AM
Olivette:
My Endo has done every test in the book for every possible cause. I was in normal range for all except Vitamin D. I think I've always had low bone density but good bone strength because of heredity. There is too much they don't know about osteoporosis. The treatments they are offering us are so new that's it's become trial and error. The fact that I didn't improve with Fosamax but my Dr. kept me on it just didn't make any sense until I realized she didn't have anything else to offer. (Boniva and Actonel are the same type of drug.) They are give us what what the drug companies are offer and hope it works.
Turquoise
My Endo has done every test in the book for every possible cause. I was in normal range for all except Vitamin D. I think I've always had low bone density but good bone strength because of heredity. There is too much they don't know about osteoporosis. The treatments they are offering us are so new that's it's become trial and error. The fact that I didn't improve with Fosamax but my Dr. kept me on it just didn't make any sense until I realized she didn't have anything else to offer. (Boniva and Actonel are the same type of drug.) They are give us what what the drug companies are offer and hope it works.
Turquoise
glowing4
05-24-2007, 09:22 AM
I get continually upset by reading so many posts by so many women complaining about the side effects of drugs such as Fosomax, Actonel, and Boniva and also so little increase in bone density. I totally agree with Turquoise - they just don't know enough. And, I totally agree that bone strength is very different from bone density.
My sister asked her endocrinologist about these drugs. She has osteopenia (which is NOT a disease) due to the thyroid medicine she must take after thyroid cancer. She said - Don't they just form a casing around the bones? He replied - Yes, that is exactly what they do. One has to ask then what is happening to the bone within this casing as these drugs stop the formation of new bone. Isn't the formation of bone exactly what our bodies are supposed to be doing? Why stop that process to put a plastic like substance around them? And, what happens ten years from now to that now fragile bone within that casing?
It is so important to read articles such as Turquoise suggested. Women have to look at this issue from all sides, not just get scared and take whatever drugs are offered, especially when such severe symptoms happen. I think for some women with severe osteoporosis intervention becomes necessary, but the average woman today is being scared into things they do not need.
Did you know that you can have a Dexa scan and have another one done on the same day at the same place and get a different reading? Did you know that different machines will give different readings? Interesting things to ponder!
I have broken two bones in the last five years. One was from a hard, hard fall - broke the wrist. Another was from smashing my hand into a wall by accident - another hard impact. I admit to it scaring me. However, I was a dance teacher and I can not tell you how many young children I had come to class with broken bones due to injuries such as mine. Am I that different from a six year old? Older? Yes. Mild osteoporosis? Yes. But, then why are their bones breaking? I took the same amount of time to heal as they did. And, I have read horror stories of women breaking a bone while on one of the drugs and it taking a very long time for that bone to heal. In fact, some did NOT heal until going off of the drugs. Why? Because to heal a break new bone MUST form!!!!
Sorry to rant, and this is totally my thoughts. But, they are thoughts I have been forming for a long time after much fear and then research. For right now, for me, the fear of the drugs far outweighs the fear of another broken wrist.
glowing4
By the way, had the kidney stone blasted with lithotripsy and am in the process of passing the pieces. I will not take calcium supplements again either after this nightmare until I figure that out. I am really beginning to believe that the right diet and exercise are the far more proper course. Modern medicine is great in many ways, but the body also was designed right and sometime we have to respect that as well.
My sister asked her endocrinologist about these drugs. She has osteopenia (which is NOT a disease) due to the thyroid medicine she must take after thyroid cancer. She said - Don't they just form a casing around the bones? He replied - Yes, that is exactly what they do. One has to ask then what is happening to the bone within this casing as these drugs stop the formation of new bone. Isn't the formation of bone exactly what our bodies are supposed to be doing? Why stop that process to put a plastic like substance around them? And, what happens ten years from now to that now fragile bone within that casing?
It is so important to read articles such as Turquoise suggested. Women have to look at this issue from all sides, not just get scared and take whatever drugs are offered, especially when such severe symptoms happen. I think for some women with severe osteoporosis intervention becomes necessary, but the average woman today is being scared into things they do not need.
Did you know that you can have a Dexa scan and have another one done on the same day at the same place and get a different reading? Did you know that different machines will give different readings? Interesting things to ponder!
I have broken two bones in the last five years. One was from a hard, hard fall - broke the wrist. Another was from smashing my hand into a wall by accident - another hard impact. I admit to it scaring me. However, I was a dance teacher and I can not tell you how many young children I had come to class with broken bones due to injuries such as mine. Am I that different from a six year old? Older? Yes. Mild osteoporosis? Yes. But, then why are their bones breaking? I took the same amount of time to heal as they did. And, I have read horror stories of women breaking a bone while on one of the drugs and it taking a very long time for that bone to heal. In fact, some did NOT heal until going off of the drugs. Why? Because to heal a break new bone MUST form!!!!
Sorry to rant, and this is totally my thoughts. But, they are thoughts I have been forming for a long time after much fear and then research. For right now, for me, the fear of the drugs far outweighs the fear of another broken wrist.
glowing4
By the way, had the kidney stone blasted with lithotripsy and am in the process of passing the pieces. I will not take calcium supplements again either after this nightmare until I figure that out. I am really beginning to believe that the right diet and exercise are the far more proper course. Modern medicine is great in many ways, but the body also was designed right and sometime we have to respect that as well.