Treating Osteoporosis: What works for you?

Posted by heritage1955 @heritage1955, Apr 1, 2016

Hi. I'm new to the site and am interested in treating osteoperosis. I'm 39 yo and recently had a bone density that showed I'm at -2.4. So, going through the intial "I can't believe it" stuff. 🙂

Interested in more discussions like this? Go to the Osteoporosis & Bone Health Support Group.

@contentandwell

@sue225. I had a minimally displaced trochanteric femur fracture last July —basically a minor hip fracture— and it hurt a lot and it took at least until November to feel better. I really do not want to have to suffer through a more severe fracture.
JK

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@contentandwell what happens when you have a "minor" hip fracture? Can you still walk on your own? (Cane required or walker) These are things we need to keep at the back of our mind before going the no treatment route.

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@contentandwell

@arlene7 the book is “Strong Women, Strong Bones”. It’s very informative.
JK

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Thanks!

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@rosemarya

@rarelybees2889, Osteopenia is my diagnosis.
I am advised to get enough calcium thru diet and with supplementalcalcium/vitamin D. Also weight bearing exercises are important. Part of my routine post transplant care is a bone density scan every 2 years (due to the effect of prior liver failure and my immunosuppressant medications). I have remained at a steady/slightly improved status for 11 years. I am also an active and healthy 71 yr old.

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@rosemarya, yes you are an Active-Healthy 71 year old. I think that you have been consistent with your health care and it works. Thanks for participating.
May you have joy and comfort.
Chris

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Thank you, Lioness, for your reply regarding Fosamax. The company (Merck) has several class action lawsuits against it involving Fosamax. Merck settled 1,200 cases claiming osteonecrosis (ONJ) of the jaw for $27.7 million. It sounds like the ONJ cases occurred after dentistry, and jawbones were destroyed. There are still multiple lawsuits pending in several states. The largest group of active femur fracture cases (over 3,000) is in New Jersey. I don't know if this information will be helpful to others. I have not made a decision yet regarding continuing this drug, but my feelings are turning against it.

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@nancyguy Thanks for this information.waiting to hear from @parrotqueen when she has her dexascan we are both on naturel products . I know my girlfriend is not on any meds for Osteoporosis only naturel plus strength training so far so good it's been over 10 yrs now but exercise is everyday a couple times

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@sue225

@contentandwell what happens when you have a "minor" hip fracture? Can you still walk on your own? (Cane required or walker) These are things we need to keep at the back of our mind before going the no treatment route.

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@sue225 I did use a walker for a while and we had to fly to Denver for my son’s wedding less than a month month later so I had airport assistance. There was no way I could have navigated walking to the gate if it was far, and it always seems as if no matter where we go we end up at the furthest gate. I was able to walk without the walker and did not use it at my som’s wedding but did bring it along in case I tired. So basically I could walk short distances without assistance, and didn’t go out to the supermarket for a while, my husband had to do the shopping.

@rosemarya you are so fortunate that you didn’t have to remain on prednisone for long as I have had to due to low blood counts. I was told by my endocrinologists that Prednisone Is the culprit in my osteopenia degrading to advanced osteoporosis.
JK

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@nancyguy

Thank you, Lioness, for your reply regarding Fosamax. The company (Merck) has several class action lawsuits against it involving Fosamax. Merck settled 1,200 cases claiming osteonecrosis (ONJ) of the jaw for $27.7 million. It sounds like the ONJ cases occurred after dentistry, and jawbones were destroyed. There are still multiple lawsuits pending in several states. The largest group of active femur fracture cases (over 3,000) is in New Jersey. I don't know if this information will be helpful to others. I have not made a decision yet regarding continuing this drug, but my feelings are turning against it.

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@nancyguy all of us with osteoporosis are in a bit of a pickle. We seem to be taking meds that are as potent as drugs used to treat cancer.

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@artscaping

@julie2020, @gailb, @sue225 and everyone else who has unanswered questions about osteoporosis medications.
1. There are three medications that work by building bone. Only three.
Forteo
Tymlos
Evenity
The length of time to be on one is determined by the condition of your bones at the entry point.
For example, I have only 5 more months of Tymlos. At that point, based upon where I started, all the work to be done by this medication will have been done. I can't stay on Tymlos after that point.

If you are on or considering being on either of the three, you may want to know when the road ends for you so that you can make a more informed decision for your initial bone-building medication. It appears that the bone-building benefit will last approximately two years after discontinuance and conservative medical support. At that time you will be faced with the next decision: What bone preservative will meet your needs for the rest of your lifetime?

Other conditions to watch while building bone are your levels of calcium and Vitamin D. The dosage amount has a lot to do with where you are now and what the demands will be for the direction you chose to take.

You will probably be comfortable about being able to handle any osteoporosis side effects with a medication dosage that lasts a short period of time. Daily would be preferred, but weekly is better than monthly, etc. etc. Make sure you can stop any time you choose without having to wait months for it to be out of your body.

2. There are post-bone-building continuation options at this time and the group is called bisphosphonates including:
Fosamax
Boniva
Actonel
Reclast.
This will be an important decision. The bone-building results last about 2 years and then you will need support from a preservative medication to protect the bone you have built.

For those of us who are highly sensitive to medications and find the side effects of bisphosphonates like Boniva impossible to handle, we will have to hope that there will be a post medication developed that does not have so many side effects. There may be one under development right now. I will continue to search. Anyone else have information to share?

Please leave me your questions, concerns, and share your decisions so we can all learn from each other. I am discovering that this situation has challenging complexity.

May you all be safe, free, and protected.
Chris

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Thanks, @artscaping did Medicare cover Tymlos? If not how costly was it? I believe cost is a reason that my endocrinologist is not suggesting it.

I had planned to start on something after my April MRI. I wanted that out of the way with good results before embarking on a regimen with one of these drugs. Now I’m delaying it until after October when I will have another DEXA and a consultation with another endocrinologist. This is such a complicated decision that I feel that input from two endocrinologists, both very highly regarded, is a good thing to do.

I wrote on the portal to the endocrinologist I have already seen mentioning information I have gained. I was pleased with her reaction, she praised me for researching things, not resent it as I hear some doctors do. I had a NP in the transplant department tell me to stop my silly habit of googling! I have avoided contact with her since then. I think when medical professionals react that way it’s because they feel threatened.
JK

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Heritage: With eating right and taking supplements and with exercise, I believe you can turn your osteopenia around. I'm in a group on FaceBook called Osteoporosis Natural Remedies, and the women there are not taking the drugs used for osteoporosis, Instead, they are eating as much nutrient-rich food as possible and supplementing the vitamins and minerals they can't get enough of through food. They are doing all kinds of exercise - from trampolines to walking to OsteoStrong (you have to check if you have OsteoStrong classes near you). I have very bad osteoporosis, partly due to a pituitary tumor that went undiagnosed until I was 61 and partly because I drank cola for many many many years (okay, my entire adult life until I turned 64). I eat as much calcium as I can, and supplement the rest. I take vitamins D3 and K2 (mk4, mk7), boron, magnesium, and I drink grass-fed bovine collagen peptides in my tea once a day. Because my osteoporosis is so bad, I am also using a small estradiol patch (I only use 60% of the patch - that's all you need to make positive change - and I take progesterone for 10 days every other month. It is time fo me to get another DEXA scan, but since there is so much COVID 19 in my area, my doctor told me to stay home (I have no immune system). I garden for several hours every day and I am careful to get between 10,000 - 20,0000 steps in every day (I live on a hill - so it's a workout). Many women in the Facebook group have posted progress made doing what I am doing, The reason I chose not to use the bone-building drugs is because I spoke with two women who got osteonecrosis just the night before I was supposed to get my first infusion of Prolia. That changed my mind in a hurry. Upon further research (and with my doctor's help), I learned that those drugs give the appearance of building bone but what they are actually doing is not letting your body eliminate the old dead bone. When you go off the drug, your body eliminates the "new bone" in your urine and you are back to where you began. Add to that the risk of osteonecrosis, and it just wasn't worth it to me. Vitamin K2 (mk4, mk7) is very important as it makes sure the calciujm you are getting goes to your bones - not to your arteries and kidneys. Boron is also important. I avoid all fizzy water which robs your body of phosphorous. Then I took it a step further - I avoid all sugar - in all its forms, as such is very bad for your bones. It has been two years and I can't wait to see my new DEXA scan score - but I just have to wait until the outbreak of COVID is gone from where I live. Before I started doing all of this, I was fracturing - my right wrist broke and I don't remember hitting it or anything stressful. I think I came close to having a broken left ankle. But that was two years ago and (knock on wood), nothing else has broken. I am very active, so I think this is a good sign. I wish everybody the best of luck. I spoke to maybe 6 doctors before I made these changes, and the ONLY advice they had for me was to take those nasty drugs. I just didn't see that as an answer. I read everything I can get my hands on to better understand osteoporosis. If I had some extra money, I would see a nutritionist and a functional doctor. Try to eat as many of your nutrients as possible,. I also take a good vitamin C (Pure Synergy makes the best I could find), Omega 3s, probiotics, a good food-based multivitamin, and a B complex. I hope this helps. Just remember that every body is different. I highly recommend that Facebook group called Osteoporosis Natural Remedies - there are lots of success stories from people there who are doing what I'm doing - in fact, that's where I get a lot of my ideas. Since you are only 39, another good resource is a book called "The Pause." Try to get the most recent copy because they update that book all the time. That's where I got the idea to go back to low-lose estrogen and my OB/GYN agreed it was a good idea for me.

Silly me - I didn't look at the date on this post by Heritage - I see it is four years old. I'm going to leave my reply as it is for anybody who may not have seen my previous posts.

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@nancyguy

Fosamax does not build bones. Supposedly, it helps maintain bones as they are. I have been taking it since last November; but am considering discontinuing it, because of numerous cases of femoral fractures, jaw problems, and some cases of cancer of the esophagus. Because I have had radiation for breast cancer, I cannot take any bone-building meds except Evenity--which I will not take because possible side effects include stroke and heart attack. The FDA refused to approve Evenity until (finally) April 2019. I take vitamin and mineral supplements, and exercise regularly. Of course, all of us must make our own decisions. Good luck to everyone!

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Did your doctor recommend Evenity?

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