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Old 06-29-2007, 06:03 PM   #1
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Recently diagnosed & can't handle drugs...many questions!

Hi all,

I recently was diagnosed with osteoporosis and I'm worried, since this decline has come fairly rapidly, even though I'm 12 years post surgical menopause. I'm suspecting my diet may be partly to blame--I have big-time diet restrictions due to IBS, and my lousy digestion and tummy issues have made me lose weight recently. I do the best I can, but maybe I could do better if I knew a little more.

I'm very uneasy about most drugs and side effects and am wondering about how well other approaches might work, i.e., exercise, supplements, whatever. Does anybody have any experience with the juvent vibrating machines (don't know if I can say the company names)? I'm not talking about the WBV machines that are meant for athletic workouts, like the kind Madonna is supposedly using. I just ordered one--this company has, by far, the most research for bone building, mostly done at SUNY Stony Brook--I read about this researcher many years ago in National Geographic. His product has been studied by the Army and NASA and is currently in long-term clinical trials for FDA approval. It's quite a fascinating technology and there have been numerous studies; it's marketed everywhere except the US as an osteoporosis treatment. But...it's far from a sure thing. I haven't been able to find any mention of this approach on this board, so I'm wondering why, if it's as good as I hope it is. I'm thinking it's kinda of a can't-hurt-might-help thing, and along the same lines, I'm starting a more strenuous exercise program as well.

I've been reading some of your posts about ezorb and strontium, and I was wondering about these. Is ezorb just calcium aspartate? Is it supposed to be all that different from calcium citrate? It sounds like some people have had good results with it, but I wonder why one organic salt would be that different from another. Is the aspartate form supposed to be more absorbable? Right now I get the majority of my calcium from rice milk--can't drink dairy or soy milk, and am scared of the calcium supplements I've tried so far because they are instantly--seriously--constipating to me, in a very painful way. But I'm willing to try anything. The rice milk calcium is tricalcium phosphate, which is probably constipating, too, but I don't get a whole lot at one time--maybe that's why I tolerate it. But it may not be getting absorbed very well, either. I get about 1000-1200 IU of Vit D a day--am waiting for my blood work to see if that's enough. I've wondered if a Vit. K supplement would be good--but don't know about whether that's really OK to experiment with on my own, with the way it affects blood clotting.

Another question is about strontium supplements. I would expect a these would increase your BMD, because a strontium atom weighs more than twice as much as a calcium atom, and bone will take up strontium preferentially over calcium, or so I've read. So it makes sense that bones with strontium in them will be denser (more weight per volume)--but unless there has been more bone building activity than you would have gotten otherwise, I question how this would make them stronger. Does strontium also stimulate osteoblasts to make more bone? Does it affect osteoclasts at all?

I've read that the calcitonin drugs (like miacalcin) help with vertebral bone loss, at least for a while, and I thought I'd ask another doc for it--the first doc said it wouldn't help me and wanted me on a bisphosphonate, in spite of my other problems. Has anybody had any success with miacalcin or fortical?

Reading about all of your stories has made me feel so much better--just hearing about other people facing these same issues helps a lot. I can't believe there aren't ways we can re-build our bones without a lot of side effects and worry about long-term consequences. If any of you have feedback for me, I would appreciate it!

 
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Old 06-29-2007, 08:05 PM   #2
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Re: Recently diagnosed & can't handle drugs...many questions!

Hi Linnaea: Welcome to the board~~~~ It sounds like you've done a lot of research already so it's a matter of deciding what to do next, is that right?

There are some other posts on this board on Fortical (miacalcin) and I posted a link, if you want to read the FDA pdf on the clinical trials. I don't take that, but people who have a lot of gi problems seem to do well on it. It doesn't work as fast as the other meds but is still good.

[url]http://www.fda.gov/cder/foi/label/2005/021406lbl.pdf[/url]

Strontium is another option and I'll let the others taking that explain, but it does build new bone and slow bone loss. You may not be able to find a dr that thinks this will help you so don't be surprised. They generally like the Strontium Ranelate which isn't available in the US, over the Stron Citrate that you can get OTC here.

I'm taking Forteo which is generally used for severe bone loss, or any score below -2.5, but this is up to the physician to decide. I know that some people with higher scores take it as well. I've had no problems with it, and feel the osteosarcoma link is really overblown (IMO). Forteo is considered the fastest bone building drug, and of course I'm prejudice, since I've done so well on it.

[url]http://www.ccjm.org/pdffiles/DEAL703.PDF#search=%22forteo%20and%2 0osteosarcoma%22[/url]

Since you have these gi problems that really limits what you could take so I listed those that are easiest on the stomach. Of course you know to get good bone vitamins, and I like vit k, but I would check with your dr on it since it does have blood contraindications.

I'm not familiar with the juvent, but others are so they'll fill you in on that. I'm not taking calcium because I'm hypercalcemic, so just be careful with what you take and make sure that you dietary + supplemental doesn't exceed what the dr recommends. I still believe getting calcium solely from your diet is best, but some find that inconvenient. Calcium isn't a risk free mineral so make sure you're absorbing it properly and taking the right kind "for you". Ezorb is calcium asparatate, that boasts it's high ability for absorption, but again I'm not familiar with it since I can't take any supplemental calcium.


Lastly don't panic, at first this is overwhelming, but with time you will get used to it. You don't need to make major changes to your life as long as you're doing the right exercises, diet etc to begin with.

Good luck on your decisions, sorry I gave you so much to read, but knowledge is POWER!!!

Last edited by moderator2; 06-30-2007 at 05:30 AM. Reason: posted commercial website

 
Old 06-29-2007, 11:18 PM   #3
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Re: Recently diagnosed & can't handle drugs...many questions!

Hi Desert Bloom,

Thank you for the links--really good information. All three of those approaches sound promising. I am anxious to learn all I can. And yes, I'm trying to figure out what to do next, since I've decided not to try fosamax, given the potential for problems I've been reading about, plus the state of my gut. It sounds like there are good alternatives--why are so many doctors on a bisphosphonate bandwagon?

I'm also interested in hearing from anyone who has tried the juvent. Since I read about it a few years ago (when the guy was using it on turkeys), I've been hoping it would become available to buy--it almost sounds too good to be true.

I appreciate the encouraging words! I'm sure you're right--it's easier to handle anything once you understand it better. I am feeling a little less panicky than I did a few days ago.

Thanks again for your help!

 
Old 06-30-2007, 04:49 AM   #4
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Re: Recently diagnosed & can't handle drugs...many questions!

Hi Linnaea. I totally understand how you feel as I felt the same way several years ago. It is scary and with everything in the news, commercials, etc., it can make you feel even more scared. My first advice is to not panic. Slow down and give this some calm thought. There is no need to rush into anything or be scared into doing things that are not right for you.

If you have read many of the posts you will see the book - The Myth of Osteoporosis by Gillian Sanson - recommended over and over. Get that book. It did me so much good by taking the fear out and she has wonderful ideas and suggestions.

Think through your options carefully. I have just come through a bout of kidney stones due to calcium supplements so don't over do anything and research anything you decide to try. Unfortunately doctors give out the basics, like take more calcium, but they don't tell you how to combine that with your diet, how to balance that in your body, that you also need magnesium to absorb the calcium so it doesn't go to your kidneys as waste, and to drink lemon juice to prevent the formation of stones. This is just one example of what can happen to your body if you do not research even what seems like a simple thing as calcium supplements.

Most bone experts will agree that weight bearing exercise is one of the best things you can do. There are many books and sites on the web that have these exercises. 30 minutes of the right exercise three or four times a week can really help.

I take strontium. I have stopped taking it while I have been going through the kidney stones as my body has had too much medicine and needs a rest. But, I plan to continue with that soon. Read as much as you can about it - it is very promising and many women on here have posted about it. I totally agree about not taking the drugs like Fosamax etc. The side effects are frightening, most especially the jaw problems they are causing - read about those on this board. They stop the formation of new bone which I find to be frightening. Our bodies need to do what they were intended to do!!

Lastly, you need to get some perspective. I don't mean this in a mean way to you at all. It took me awhile and it took reading, talking, and researching for me not to be so scared. Understand that osteoporosis is a big money maker right now. Not that I take it lightly, for I don't, but here are some things to think about. DEXA scans are not perfect and they only measure bone density - they do NOT measure bone strength! If you look at the statistics, the chances of a woman breaking a bone at 50, 60, and even 70 are very slight. Most awful hip fractures you here about are in the elderly and then that is combined with other health issues. Death from hip fractures is not caused by the break, but rather things like pneumonia in the elderly when they are not able to move around and heal like a younger person would. If so many women are falling apart then why don't you see them walking through the food stores in casts? Interesting question to ponder! Lots of factors go into bone loss, so don't beat yourself up over what you did or didn't do, just make a plan and work towards it. One of the things that helped me the most was to be active with it by starting a good exercise plan. It gives you back the control and makes you feel that you are doing something positive. And, read, read, read whatever you can, but sift through all of that and come away with a balanced view - not leaning towards one side or another, but finding a balance with all the experts.
And, remember, what you see in commercials is NOT the experts!!

Again, I totally understand how you are feeling right now, and I do not discount the seriousness of this disease and the need to do something about it. But, with the right knowledge and right decisions for you, the fear will fade and you will feel much better. The most important thing is to live your life without fear. I have broken two bones from very hard falls, but so have my children when they were younger, so have the little dancers I taught from falls on playgrounds, and so have many young adults - all without this disease. You need to know that healing is a natural thing that the body does and sometimes yes with help. But, accidents do happen to all of us in some form and we can not live our lives in fear of that. And, I have read of women breaking a bone and NOT healing while on the drugs. Bone needs to build new bone in order to heal itself and these drugs stop that process. I healed as any six year old would heal in the exact time frame required for that healing. And, I live my life like I always did. More aware, certainly, and trying to take the right steps, but living. Don't let fear take that from you.

Hope this helps. I am far from an expert. Just a lady who has been where you are and formed some opions. Listen to ALL the opinions and then decide what is right for you, not what is right for anyone else, nor what the standard practice seems to be.

Thinking of you,

glowing4

Last edited by moderator2; 06-30-2007 at 05:23 AM. Reason: posted commercial website

 
Old 06-30-2007, 05:41 AM   #5
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Re: Recently diagnosed & can't handle drugs...many questions!

Hi Linnaea, welcome to the board. DesertBloom and glowing4 have given you excellent adivice and there is really not much i can add except to say that with education, diet and exercise you can do alot to help yourself. Like glowing4, I am a beleiver in the advice and prespective given in The Myth of Osteoporosis..that book was the light at the end of a dark tunnel for me. It made me realize that having osteo was something to be aware of and dealt with, but not something that would make me change how i live my life of make me stop doing the things i enjoy.

I too am taking strontium...have been since August 2006. I just had a DEXA and even though the scores aren't 100% accurate it did show new bone density..you can read them in a lower thread...DEXA results. I was thrilled with the results and will continue to take it. I have had no side effects. Strontium is also good for the teeth...i haven't had a cavity in the last 2 checkups i've had. So thats an added bonus. IMO, but others may disagree, the osteo drugs now available do more harm than good in the long run. The article link DessetBloom gave is a good one, it really give a good expanation of strontium.

My last bit of advice to you is to step back and look at the big picture of your life. You are still the same person you were before the dx. Stop beating yourself up..we all feel we are to blame for what is happening to our bones...we're not. Bone loss is a fact of life, as we age we lose bone mass, some of us just lose more than others. Here's a tidbit...many moons ago (30+years) i worked as a nurses aid on an orthopedic floor...i saw a lot of broken hips and they were all in women over 70. I never did see the word osteoporsis on their charts and don't remember even hearing the word. Things sure have changed. Between the commercials,which i cringe at everytime, the drug comanies and dr. who live in fear of lawsuits, osteoporosis has become a big business.

Be good to yourself..take a walk, read a book, and enjoy life, whatever makes you happy and makes you feel good about yourself. ..take care...phylls

 
Old 06-30-2007, 05:47 AM   #6
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Re: Recently diagnosed & can't handle drugs...many questions!

Research also Dr. Susan Ott. She is a leading bone specialist and her information is excellent.

glowing4

 
Old 07-01-2007, 11:32 AM   #7
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Re: Recently diagnosed & can't handle drugs...many questions!

glowing4, phylwill and desertbloom, thank you so much for your thoughtful responses! I am SO glad I found this forum. You are knowledgeable, smart and supportive, and I am learning so much from reading through your posts, and other people's, too. Your courage and positive attitude give me a real boost! And the info and links you have given, in these posts and others I've read from you, are fantastic.

Sorry not to get back before now--got in late last night after a day when I was able to forget all this for a little while. And as you pointed out, phyl, I am still the same person I was pre-diagnosis. It's sinking in that this is not something that happens overnight, and it isn't going to turn around overnight either, but hopefully with some patience and persistence, something will happen to at least slow the slide. In the meantime, I'm trying to just be more careful, and learn a lot, and realize that I have to stay motivated even without being sure of whether I'm making progress. I will definitely get The Myth of Osteoporosis since everybody recommends it--our library doesn't have it so this is one I will buy.

Phyl and glowing4, your comments about how most severe issues with this occur in people in their later years hit home. A little over ten years ago, my mother was in her late eighties when some well-meaning PT's sent her home after a hospital stay with a 2-wheeled walker (she had been hospitalized after a drug reaction--a painkiller for back pain--like me, she couldn't handle drugs--she had been using a 4-wheeled walker prior to that, much easier to use, but also less effective for stopping a fall). Nobody thought to consider how bone density issues might have been contributing to her back pain, and how weak her back must have been, and what the consequences of using this walker would be. Anyway, within a short time after starting to use the walker, she developed a very severe curve in her upper spine--the force she needed to move that walker across the carpet caused her to lean forward, and her vertebrae just collapsed under the strain. After that, she started having falls, though she never broke anything, amazingly. However, her deterioration really began at that point, and it was the saddest thing I've ever had to witness. But she was four decades ahead of me in age, and I figured I had some years ahead before I was facing these issues.

My cousin wrote to me a few months ago to report that her bone density was down and her doc was suggesting a drug, and she wanted my opinion. I blithely responded that I didn't think we had much to worry about, that my mother never had issues until the walker set off her spinal collapse--and that not until her late eighties. Well, I don't think that any longer--my optimism about dodging that bullet is now, I won't say panic, but I'm no longer kidding myself that I can just relax about it and worry later, when my BMD is really through the floor. It's not too bad now, -2.6 at the hip, (they've never been able to read my spine due to arthritis, I think) but it has slid over 6% in less than 3 years--after actually improving for a while. So while I agree that it's important to have some perspective about it, and realize that many of us won't actually be suffering from this and having life-threatening fractures until much later, if at all, I'm wondering if maybe those earlier generations that we saw deteriorating only in their later years had some other advantages that we didn't have that made their bones stay stronger for longer. I mean, if they had been able to measure my mother's BMD when she was my age, would it have already been this low? I doubt it.

I am trying to view this process as just a wonderful reminder and motivator to get fitter and stronger--and I'm just hoping that I'll have the self-discipline (and confidence) to make that happen, along with the luck to find some drugs/supplements/exercise/vibrations that I can tolerate and that work for me. I'm going to check out strontium some more, and the calcitonin and forteo drugs, and I'm excited about the juvent device, which is supposed to arrive at my house on Tuesday. I feel like I'm being extravagant to buy this (it's on sale for $2250), but it sounds like something I know I can tolerate and that works pretty well for some people. It's supposed to work even better with smaller people, and that is me, especially since my weight is even lower now that my digestion has fallen apart. And I am hoping that this trainer I signed up with will also help me a lot. So at this point, I'm enthusiastic--a little sobered and nervous, but also excited to find some possible solutions.

Thanks again to each of you for all of your help! I am looking forward to reading more on this forum, and especially to following your posts. I will also pass on any good info or questions that come along.

Linnaea

 
Old 07-03-2007, 07:49 AM   #8
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Re: Recently diagnosed & can't handle drugs...many questions!

Hi Linnaea, isn't it great what a little time and gathered info can do? You sound so much better this week. You brought up a good observation about earlier generations. When you think back the generations that came before us, they worked a lot harder than we do. They didn't have modern conveniences to do the work for them..no washing machines, no vacumn cleaners, no cars....everything they did was by hand using their own muscle strength to accomplish all their chores. Their daily lives kept their bones strong thru plain hard work. Their diet didn't include highly processed foods..food was eaten fresh,chemical free. and probably not in the quanities we eat.. They also didn't have the medical advances we have now that told them when things weren't up to par. Since we have no way of knowing what our bone density was at its peak, we really have no way of knowing just how much we've really lost. I probably had osteo long before i was tested and did fine. Knowledge is a wonderful thing, but sometimes i almost wish i didn't know what i know...the saying "what i dont know can't hurt me" would sure make life simpler.

Just thought of something..when you see the trainer ask him to include balance exercises...staying upright on your feet it really important when preventing falls is the goal. have a good week and safe happy 4th...take care...phyllis

 
Old 07-09-2007, 08:59 AM   #9
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Re: Recently diagnosed & can't handle drugs...many questions!

Linnaea:
I was informed after a DEXA scan in late 2004 I had osteopenia.

I could not get behind taking Fosamax myself. Big pharma's drugs quite frankly frighten me. Dangerous side effects.

Instead, I took it upon myself (after having a shouting match with the GP & basically firing him!) to do:

Bioidentical progesterone gel (I had my hormones tested for shortages)

[removed]
dhea
melatonin
Bone Restore Calcium
Vitamin K
24g l-arginine (Dirk & Sandy PowerMaker) at bedtime.

I eat alot of veggies daily & consume dairy, too. I think my bones got a bit thin because I used to smoke.

I go to the gym 3-5 times per week & do some serious weights.

I have had a recent DEXA. Problem solved. No longer have opteopenia.

Actually, I trust big pharma's drugs so little, unless the drug is for infection or pain, that I was comfortable making this decision. But, it took research on my part, and I have no health reasons preventing the gym workouts either.

Last edited by mod-anon; 07-09-2007 at 12:07 PM. Reason: do not discuss how to find websites.

 
Old 07-11-2007, 10:49 AM   #10
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Re: Recently diagnosed & can't handle drugs...many questions!

Thanks, phyllis and chescat, for your responses.

Phyllis: You are thinking like me about what earlier generations had in terms of bone-building advantages. My mother never learned to drive, and always managed to find ways to get around using her own two feet. When my kids were little, and she was in her 70's, she chased them and carried them and pushed them up and down hills in their strollers. She carried her bags of groceries back from the store and refused offers of a ride. She was a lifelong milk drinker, ate healthy, and never relied on medication for anything much until her late eighties, and that includes post-hysterectomy (like me, she lost her ovaries in her forties, though unlike me, she did not have estrogen after). Although her osteoporosis hit her hard after she started to decline, I can't help thinking that her bones, at my age, must have been much stronger than mine have become, though who knows--maybe some of us with osteoporosis can just go for a long time without serious symptoms. My goal at this point is to try to un-do some of the damage done from maybe a bit too easy of a life--too much time riding in a car, and, frankly, sitting in front of a computer! You mention doing balance exercises--and yes, I am coming to believe this is so important, too. I have appreciated reading the recent posts on the unipedal standing thread, and I'm trying to include some of these exercises in my routine. Also, I just got a book from the library called "Walk Tall, an exercise program for the prevention and treatment of osteoporosis" by a PT, Sara Meeks--wonderful, easy exercises that don't hurt--for me that is a real bonus. My recent experience with a personal trainer left me sore and a little confused--I need to work up to being able to do exercise at this level.

Chescat: Your success is inspiring. I had not heard of some of the things you mention as part of your routine and I will check them out. I'm wary of most drugs, too, but I know that for some people they are a godsend and can make a very positive difference. For others they can become a nightmare. I seem to generally fall into the second category, so I'm doing all I can right now to see if I can stop the bone-loss slide using alternatives, including improving my diet where possible, starting an exercise regimen devoted to bone-building and balance, and starting vibration therapy. I just got a juvent machine. It's a very relaxing way to spend 20 minutes, and it makes me feel good, too--and I'm hoping that it will persuade my old osteoblasts to lay down some new bone--won't know for probably about a year, with my next DXA, but the research seems to suggest that with good compliance, it is effective, hopefully as effective as the bisphosphonates. When I stand up tall, with my knees straight, I can feel this slight vibration right up into my head. This makes me think that my bones are getting some good signals to wake up and get stronger. The machine adjusts to your particular body make-up, so that the vibration you get is just the right frequency to resonate in your bones, and to stimulate particular muscle fibers that help with balance--or at least that's the way I understand it. I wonder if maybe that's why it feels good. It took a little getting used to the first day or two, but now I really like it.

I'm feeling so much more positive than I was a couple of weeks ago--there seem to be many promising approaches to try. I've appreciated reading about everybody's experiences here. And I'm confident that, even if the initial efforts I'm making don't completely reverse the slide, I must be doing some good for myself, and there will still be plenty of other paths to explore.

 
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