Seeking Best Options for Osteoporosis

Hello All,

I have found the postings of this site quite informative in helping me try to reach some conclusions about how to treat my Osteoporosis. I found out I had Osteopenia with my first bone density test at age 50. My mother had Osteoporosis and took Fosomax (but I am unaware of it really changing anything).

Last year I had my thyroid removed (which had probably been hyper many times in my life) and found I had been fortunate enough catch cancer early that would have moved to a more agressive stage within the year. Of course, my calcium levels and so forth have been monitored carefully since then. I just had another bone density test and found that the Ostopenia had progressed to Osteoporosis and my doctor reommended I have a treatment of Reclast.

My son is in the field of Orthopedic surgery and he is very reluctant to have me undergo this treatment or the other drugs based on what he has seen. I am scheduled to have the procedure done this week, yet after reviewing sites with testemonies of reactions and articles of even deaths, I have second thoughts.

I have decided to wait on this and go back to discuss it further with my doctor before I go to this treatment option. Yet I will be honest in saying this is not without mixed feelings. I have a family history on my father's side as well where females have had broken bones later in life or hip replacement surgery. My grandmother died from compications after breaking her hip.

I have only known of the changes in my condition a little over a month; I think it is wise to wait awhile longer. It turns out my last bone density test showed the condition even before my surgery, and my regular doctor did not bring the change to my attention. He had felt I was doing well with my diet, exercise, and so forth. That said, I have had some significant health changes in the last year. I didn't like seeing a section that said once you show -2.5 or higher in any section that it is definitely elsewhere. The rest of my scan looks great in comparison!

I want to make the right choices to keep myself healthy and active for many years to come. Are there any sites with more up to date statistics on all the reactions and so forth on Reclast? I may consider the treatment a few months from now, but I really want to wait awhile longer and see what further information comes out from this.

My sincere sympathies to all the individuals who have lost loved ones or have had severe reactions to this drug. I have a tendancy to be rather sensitive to some medications and have occasionally strange reactions to some. So I really might not be a great candidate for this treatment.

I would love to hear from individuals who have chosen to find natural solutions to deal with Osteoporosis and how they have done over time with calcium supplements and vitamin D (which I am taking) along with a healthy diet and exercise. I would especially love to hear what people have done that have reversed the trend without some of these drugs.

The number of people who develop this are considerable so I am sure to get some interesting feedback. I have an active lifestyle and want to keep it that way. I also have two sisters and daughters that I want to help keep healthy as well (not to mention future grandchildren).

Thanks in advance,
Cheryl

By TedHutchinson
Reply 3494544
October 27, 2012 at 5:08 pm
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ScottsIrishGreenEyes posted this link High Levels of Vitamin D Needed for Bone Density Drugs to Work, Study Shows yesterday

While you are considering what to do it may be worthwhile to raise your 25(OH)D to above 33ng/ml (ideally to a more natural level of 50ng/ml at which Vitamin D3 is most effective as an anti-inflammatory agent) Then maybe you would get a better response if you do decide to go the bisphosphonic route and if you don't you'll at least have improved your ability to deal with chronic inflammation. 1000iu/daily/vitamin D3 for each 25lbs weight is usually required. It may also help to increase magnesium, vitamin K2 and omega 3 at the same time.

View the Evidence: Problem Substances
Zoledronic Acid GREENMEDINFO
Not happy reading.

By CherylJV
Reply 3494680 · In reply to 3494544 by TedHutchinson
October 27, 2012 at 6:26 pm
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Ted thanks for your response. I am also adding what my son just shared with me as well. I will check out the site your shared.

From my son: I agree with your decision. I’m not saying Reclast is a bad treatment; it’s just that you haven’t really attempted less invasive measures first. (I have done some and need to do more). Osteoporosis is a serious problem that needs to be addressed. Very safe measures to treat bone density as I outlined that will increase bone density short of medications that alter bone metabolism are:

Daily calcium supplementation (the hardest to get, because of the way your stomach absorbs it, you need to take it multiple times throughout the day with meals)
High dose vitamin D supplementation (helps absorb calcium, also has anticancer side effects and has been shown to prolong life in real scientific studies)
Protein supplementation (in addition to diet)
Vitamin C supplementation
Zinc supplementation
B vitamins and foliate
15-20 minutes sun exposure without sunscreen daily
Exercise

The aldronate/bisphophonate medications are not without serious side effects. Long term prolonged use is associated with pathologic fracture of the femur which is the very condition that they are intended to treat. These are being recognized more and more so they are not the magic cure to osteoporosis as was originally thought. Reclast is a recombinant protein that is an analogue of your body’s parathyroid hormone. It is likely safe, but I would not be surprised if its administration is linked to other cancers in the future. One of the contraindications to its use is Paget's disease due to risk of developing cancer. I am sure there are other conditions that will be discovered with more people taking the medication. You may indeed need to consider it if your bone densities don’t improve, but I would try those other measures first.

Also, osteoporosis is most associated with peak bone density that is achieved in females 20's. Therefore, it is your daughters that need to listen to the advice I listed below more than anyone. Adequate calcium consumption is not a part of most people’s diets. You need to drink several glasses of milk daily. Cheese on a sandwich is not enough. Women who have good bone density in their 20's are much less likely to develop osteoporosis after menopause.

By Jubey
Reply 3495513
October 28, 2012 at 3:46 am
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I have been put on a product called Protos which is in a sachet and needs to be taken on an empty stomach. I am a little apprehensive on taking this product as i dont know much about it. My last bone scan identified i had osteoporosis. My previous scans had identified oesteopena. I am 70 and have been fairly active but had to take almost a year off due to other health issues that popped up. That probably didnt help. I have started oesteo exercises at a gym and take a metagenics product called Oesteo plus. Is taking this medication a good idea or would i be better upping the exercises and milky drinks etc?

By Texastreat
Reply 3495700
October 28, 2012 at 8:22 am
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Hi Cheryl,
I'm 53 yrs old and was dxd on Thursday with severe osteoporosis. I had my thyroid removed in 2008 (hypothyroidism - with Hashimoto's) and had gastric bypass done in 2010. Hit menopause in the last two years, apparently the combination for the "perfect storm" in my body. My doctor has recommended Forteo instead of the Reclast etc. I'm researching it as well. Have you heard of it? Can you ask your son about it? I'd love more feedback on it. It might be an option for you too. As I have a small pouch for my stomach I have to be careful of what I eat as things that are designed to remain in your stomach (time released capsules etc) do not work for me. Also, I take Armour replacement for my lack of thyroid as I did a lot of research on Synthroid type products and did not like how it affected me when I tried Synthroid at first so I have stayed on Armour. This is all new info to me so I'm like a 5 year old lost in the forest...reading and trying to find out as much as I can as no one in my family has had any of these issues - just me. Thanks for any and all info...Cheers, Tee

By sedona97
Reply 3495717
October 28, 2012 at 8:34 am
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CherylJV, I had one infusion of Reclast and had a very bad three day reaction, hard shivering and shaking, all over pain. I couldn't get out of bed. In the past I have taken, Actonel, Fosamax. Now I am taking Boniva. My dexa scans show my BMD drops 4% each year. I exercise, eat properly and take several supplements. I am investigating the supplement recommendations by Ted H, lilypads, SaraD, Dxgeru, plus many others. Best of luck to you.

By alwaysgrateful
Reply 3495892 · In reply to 3495700 by Texastreat
October 28, 2012 at 10:02 am
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Tee,

Just read something about gastric bypass in another discussion - see entry yesterday by ParticiaF

http://www.inspire.com/groups/national-osteoporosis-foundation/discussion/c alcium-and-heart-disease/

By CherylJV
Reply 3495958 · In reply to 3495892 by alwaysgrateful
October 28, 2012 at 10:35 am
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I will copy and post your questions to my son. I am flying out to see him next weekend (another reason I postponed doing anything). I figured the timing could be awful. I think I still have time to fight this based on the comparison I have seen from my prior bone scans. However I have also had the perfect storm in my body over the past few years, and I can tell the difference in how I feel. I know I felt the best when I made time for regular weight training along with my walking and aerobic activity. I haven't been as good for a couple of years.

One year, I got pneumonia pretty severely (at my son's wedding) and it took awhile to bounce back. I was finally getting back into good routines and so forth when I stumbled on the thyroid condition. I was really lucky. I was just feeling tired and dizzy and my husband nagged me to see my cardiologist. Everything they tested was fine, but the ultrasound on my carotid arteries showed the thyroid issue. After that, it was a whirlwind of tests and doctors. The surgery was just this last Feb. It has taken awhile to adjust to that.

If you check out the post I put on my homepage, another individual posted some interesting links. I should copy and paste them in here as well.

By georgia111
Reply 3496374
October 28, 2012 at 1:27 pm
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I am also in the process of deciding what to do about Reclast. It was recommended by my doctor but I worked in the dental field for many years and my friend and first dentist that I worked for, is very much against this procedure. There is a condition that can be caused, (not sure of it's name) by this procedure. It causes the jaw bone to die. Then there is the increased risk of leg fractures. Wow these are terrible side effects - wouldn't it be better to continue the good diet and exercise that I have practiced for many many years?

I do not have a thyroid and the replacement drug (Synthroid) is also thought to cause bone loss. Then there is the school of thought that dairy products and calcium suppliments also have terrible side effects. Where do you go to find the truth about

By Texastreat
Reply 3496378
October 28, 2012 at 1:29 pm
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Thanks Cheryl, I will definitely peruse your home page too! Hindsight is always great isn't it? LOL Just this year I started at a new gym and worked for 2 months with a great trainer (close to my age) so that I would not hopefully hurt myself...and here I get this new dxd! Life is so mysterious at times eh? Before this year I never set foot into an actual gym to workout with free weights and here I find out that I will be adding to my routine now due to having osteo. God was preparing me apparently. <smile>
Have a great week and enjoy your visit with your son. Cheers, Tee

By Lorrieanne
Reply 3496617 · In reply to 3495958 by CherylJV
October 28, 2012 at 3:14 pm
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Hi CherylJV, A great read for your flight is YOUR BONES by Lara Pizzorno! Covers all of the vitamins and minerals needed for bone health! :) Plus lots of other good info.

By CherylJV
Reply 3497034
October 28, 2012 at 6:12 pm
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Wow, it is amazing the output of support and advice that is given. I already ordered the book yesterday. I feel guilty about my on/off weight regime the past couple of years and pulled out my Total Gym today and put it to work. I love the fact that grocery stores carry Kale more these days and have learned to substitute it for lettuce, although it takes some getting used to!

I heard about the dental stuff with Reclast too and my son warned me about the breakages he has seen (not just with Reclast I might add). I know I hadn't been keen on Fosamax years ago and did okay for awhile with the estrogen replacement therapy. I stopped that about 2 years ago and it isn't advisable for me. I will say that I did like the way I felt when I took the hormones.

I think a great deal has to do with where the T-scores are at. Since I have increased my calcium (after surgery), I actually improved some from the previous July's bone density test. I think I have a good case to say can I wait about 6 months and then see how it has gone and whether it is progressing or not? If so, I think I may look into Fosamax instead. I did not like what I saw on Reclast and I am the type that often gets reactions to meds.

Speaking of hindsight, that is what is great about this site. I had a nagging feeling that I couldn't shake about doing this and after some research I feel quite comfortable with my current decision. Now I will need to see what my endocrinologist says, but she hasn't known my whole health history that long to be quite honest.

Tee, God does prepare us for what we have to deal with. I seemed to know about my cancer before I even knew if I had the condition and mentally prepared for the worst case scenario. My husband said he felt his heart stop and I was asking questions about what type, what size, and so forth. Based on what I heard I said, "Great, I do not need to do radiation."

The synthroid seems to be working okay for me along with the other med I take. The generic did not do well for me.

Well, I am off to watch the Giants game at my in-laws!

Cheers,
Cheryl

By lilypads
Reply 3497495
October 28, 2012 at 9:20 pm
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Jubey, Protos is strontium ranelate. It is a patented product. There are many studies showing its effectiveness. However it seems to have some side effects caused by the substances that were added to it to make it patentable--aspartame and mannitol.

If you can get strontium citrate, it doesn't have those additives and seems to work just as well, since it is the strontium, not the ranelate, that improves bone. Strontium citrate is not expensive.

There is a lot of info on this site about both products. You can do a Google search for "strontium ranelate inspire.com" and you will find it. I believe there are members here from Oz who are taking strontium citrate, but I'm not sure.

By CherylJV
Reply 3502625
October 30, 2012 at 6:46 pm
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Oh my, as I read these testimonials on what have happened to people that have had Reclast, my heart just goes out to them. I feel like God was watching out for me when I came upon this site in my search this weekend. I first went and viewed some positive videos and was feeling fine about my decision to do this. Then I changed the search variables read some things I didn't like so much and came across this site. Wow! My son had urged me to look into it further and I had planned on doing so, but I had procrastinated at little. I spent hours researching this weekend and becoming more informed.

One thing I have noticed is that the commercials on television haven't been happening like they used to on these medications and it makes you wonder why. That is why I am determined to try to more natural way first and take a very conservative approach if I have to do more. I do think I could ever get the courage to even think of Reclast after what I have read. Those of you that have posted these stories are definitely helping other individuals that are facing tough health decisions and want to have as many facts as possible.

Thanks again, CherylJV

By Jubey
Reply 3503458 · In reply to 3497495 by lilypads
October 31, 2012 at 12:53 am
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Hi lilypads
Thanks for that information. I will follow up on strontium citrate. Its been interesting reading the various responses to bone density therapy. I have taken protos for 2 months and then started to think a bit more about what i was taking and started to wonder about side effects. Jubey

By lilypads
Reply 3503508
October 31, 2012 at 1:43 am
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http://www.inspire.com/groups/national-osteoporosis-foundation/discussion/s trontium-citrate-side-effects-2/

Here's a recent discussion about strontium. There are many others. You can find them with a Goog;e search that includes "Inspire.com."

By CherylJV
Reply 3521837
November 6, 2012 at 11:35 pm
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Hello All,

I promised an update after seeing my son and going back to my endocrinologist. I didn’t get much from my son. We were busy helping him, and his wife, move into a new condominium. He was pleased that I had delayed having Reclast and hadn’t completely ruled it out in the future. I said I was more comfortable taking a more conservative approach if I need to and we left it at that. However after really thinking about it further, I realized that it would be very difficult for him to give any solid advice without actually seeing someone as a patient and knowing all their personal variables. I haven’t had a fracture and am still under 60. Even so after looking carefully at my T-scores and so forth, my risk factors have definitely increase lately and I will have to be cautious in my choices over time. I just got the book so it is sitting next to my favorite chair ready to review.

Yesterday I saw the endocrinologist. She sort of said, “Oh, no!” when I mentioned I had researched online, but I said that after talking with my son I had decided to put off my initial decision of an infusion until I had done some research. Then I mentioned most of what I had learned about was on this site, one that she highly recommended herself and that seemed to make her feel better. We both were at ease and even laughed (glad I can do that after hearing some of your tales), and when I mentioned about kidney functions she was quick to go right to my files and assure me that she had checked all that out (I hadn’t been certain) and how conservative she was on her approach with any of these treatments-pills and infusions. She hadn’t been recommending more than one for me and hasn’t obviously run into a lot of the reactions that I read about. That said she has been in the field for quite some time. We both agreed that I had the gift of time to see if I can improve the scores some. So I am waiting for a year to take another bone density test and see if I have been able to improve my scores without taking the drugs. She did not feel that I would progress into a more dangerous zone in that time.

That said, if I slip radically the other way…well, I will cross that bridge a bit later and try to do the best to tip it the other way. That does give some time to see what continues to develop with the statistics for these drugs and so forth. She mentioned there were some that were really good only that insurance companies do not like to pay for them.

I didn’t get any clear picture about Forteo or some of the other medications. What I did come away from was a clear picture of what I had already realized. Each of us has to make our own informed decisions. The doctors have to tell us what can be done to reverse these scores to protect themselves from malpractice lawsuits. By documenting they have done so, and we turn down the treatment, they are protected. I understand this. As my doctor stated, the only one that could really tell me to do otherwise on what she recommended was myself. Neither of us were dismayed by my postponing doing anything more radical and I agreed to be open minded about it if my tests go downhill.

Osteoporosis is no laughing matter. I spent most of the last week with my mother-in-law in the hospital (and how it will turn out is still not certain). She has broken bones and moves little (but still moves). She takes something that she inhales for bone density. She is 86 and the last of our 4 parents to be alive. I would hope that I could be stronger than her at her age, but I have to reach it first. My mother also took medications for Osteoporosis and never actually broke a bone. Time will tell.

I again want to thank the other people of these groups for all your openness in sharing all the struggles each of you have gone through on this journey and are still going through. One of my good friends is Dan Buettner, Google his name and search out his site on longevity and living well. http://www.bluezones.com/ I have known him since 2000. He has fascinating information on learning how to live well.

Well it will be interesting to see how the elections turn out tonight. I have a feeling this may be longer than just waiting until tomorrow.

By CubbieFan2308
Reply 3524580
November 7, 2012 at 10:26 pm
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CHERYLJV:

One of the reasons your doctor may have been apprehensive about the Gorgeous is that you have to have a t-scotre of -3.5 or lower or suffered from fractures before insurance will approve it.

As to the nasal spray that your relative uses, I am betting that it is a Calcitron or something like that many use. Those that use it have good comments about it.

It sounds like you have made some wise choices in your osteoporosis treatment plan. I am hopeful by the time that another year comes around that Reclast is off the market, if I have anything to do about it. It has personally caused me so much problems that I have been working tirelessly to getvit off the market. I was one of the people that was selected to testify before the FDA Board last September, 2011, in Maryland. Afterwards a blackbox warning was issued on it for the atypical femur fractures and the kidney
issues. It was a far cry from what we wanted of having the drug removed from the market all together, but we will get there.

You see, what happens is this drug forms a shell of a bone around your bone, which is basically like china. It is extremely fragile and crumbles easily -- not what you want nor expect from an osteoporosis medication. That is why wecare seeing the high
incidence of atypical femure fractures. Ti's is one of very, very many side effects that cause severe consequences to people taking it. When I went to Maryland to testify, there were over 200 people there in support of the ones there that were speaking about
their fractures. Only 16 of us across the nation were selected to speak before the Board. I felt fortunate to be one of them.

Best of luck to you in your osteoporosis treatment.

Sincerely,

CubbyFan2308

By CubbieFan2308
Reply 3524582
November 7, 2012 at 10:28 pm
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By jackie_t
Reply 3524909
November 8, 2012 at 3:35 am
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Cheryl, you are blessed to have such a caring son who is so willing to look out for your best interests! What he is suggesting to you is EXACTLY in line with the US Surgeon General recommends for osteo treatment. You can read more about it here: http://www.betterbones.com/blog/post/Is-your-doctor-following-the-Surgeon-G enerals-advice-about-osteoporosis.aspx

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