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.

@mohavegal

Hello, I'm new to this group. My osteoporosis is not improving and after a dexa scan my doctor wants me to go on a drug. Tried one before and experienced a REALLY bad reaction. It was Ibandronate Sodium. Don't know what "family" it's in. Having horrible pain when lying down.

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Fosamax and Atelvia (risedronate) both are classified as a bisphosphonate medicine. I was on Fosamax for 8 years and had bone scans every 2 years during that time. Each bone scan showed bone loss. I am currently at -3.6. My doctor took me off Fosamax and 5 years ago and have had 2 bone scans since going off of it. Both scans showed that my bones are stabilized, i.e., they haven't gotten any worse. I have increased my exercise and intake of calcium. I feel great. I am not going to take any chances with any bone drugs, either the pills (bisphosphonates) or injections (Forteo and Prolia). I feel it's like Russian roulette - and I'm not willing to take the chances of having a bad side effect - some of which are not reversible.

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@mohavegal

Hello, I'm new to this group. My osteoporosis is not improving and after a dexa scan my doctor wants me to go on a drug. Tried one before and experienced a REALLY bad reaction. It was Ibandronate Sodium. Don't know what "family" it's in. Having horrible pain when lying down.

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Thanks, @jaleen . My instinct is to avoid these scary meds and work on calcium from food and weight-bearing exercise, weight training, etc. Altho I do all those and it didn't help, evidently. I have osteopenia in my family history and my doc says it's genetic. I'm 53 and mad as hell. Hope my doc has better solutions.

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@mohavegal

Hello, I'm new to this group. My osteoporosis is not improving and after a dexa scan my doctor wants me to go on a drug. Tried one before and experienced a REALLY bad reaction. It was Ibandronate Sodium. Don't know what "family" it's in. Having horrible pain when lying down.

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What has occurred to me is that our mothers and grandparents had never heard of osteoporosis and they lived their daily lives without fear. I think too much emphasis on this - and I blame the drug manufacturers who are making billions on these drugs - and getting nice tax breaks now with the new Tax Bill so they are even richer - along with doctors for promoting these medications - without even mentioning that there can be very serious side effects. As in everything else, we do the best we can each day and leave the rest to God. There is one thing we can do besides exercise and good nutrition and that is meditation (which I haven't done but plan to try in the New Year).
As to side effects, I suggest that you google the medication your doctor wants you to take, i.e., Actinol - User Reviews and you'll read about the experiences of real people with this drug (or any other). For what I was researching (Forteo - an injection drug), for every positive review, there were 4 negative ones, on the average. In my experience, the rheumatologist that I was referred to didn't even mention that there could be side effects with Forteo. I found that out by going online and reading everything I could find out about this drug. When I went for my 2nd visit, I told the doctor that I decided not to do it and he said (and I quote), "You don't need to come back." He never once mentioned diet or exercise. And he was the senior doctor in his department!
One other thing - there is more in our body than just bones. The bones we have are supported by muscles. Why aren't the doctors talking about strengthening the muscles around the bones? Most of my exercies (which I learned in some sessions of physical therapy) are to strength my back muscles. If the exercises help my bones too, that's a bonus, but not the main reason I am doing them. For my bones, I do the treadmill and stationary bike.
Stop worrying and be happy and thankful for what you have! That's my advice, for whatever it is worth.

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@mohavegal

Hello, I'm new to this group. My osteoporosis is not improving and after a dexa scan my doctor wants me to go on a drug. Tried one before and experienced a REALLY bad reaction. It was Ibandronate Sodium. Don't know what "family" it's in. Having horrible pain when lying down.

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@jaleen, Well said! I have refused to take the biophosphates as well for three years, My now third endocronologist says that the 3-24 hr urine tests showed extremely excessive amounts of calcium loss in urine, (triple the % of a woman my age)! She cannot believe other endo’s didn’t address instead of just trying to push fosamax! ! I also have a rare immune deficiency that my B cells do not mature into antibodies. My body continues to reproduce B cells in my bone (thus overworking and potentially depleting the bone) to accommodate for lack of antibodies (b cells matured). I infuse plasma every week filled with antibodies to help ward off germs, bacteria’s, etc. The endo’s just don’t pursue CAUSE and treat cause,,,instead they throw the caustic drugs into our bodies to make up for the depleting bone density! Find & treat the cause, instead of trying to refill a tank with a hole in it!!Sorry your Dr was so rude, It is just tragic our medical industry is no longer a profession of care, or a yearn for investigation of causes that will possibly cure not harm the patient!

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@mohavegal

Hello, I'm new to this group. My osteoporosis is not improving and after a dexa scan my doctor wants me to go on a drug. Tried one before and experienced a REALLY bad reaction. It was Ibandronate Sodium. Don't know what "family" it's in. Having horrible pain when lying down.

Jump to this post

Great point about osteoporosis being around long before we had a name for it! There were no tests for it when my grandparents were living, and my mother who is 97 years old has never had a scan for it and doesn't want one...so who knows??? I walk the treadmill almost every day, and I stress "walk". Being aware and careful in the activities I do is part of the changes I've made since finding out I have osteoporosis and stopped taking prescription drugs for it. I haven't stopped participating in the activities I love, I'm just more careful and mindful when I'm doing them.

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@mohavegal

Hello, I'm new to this group. My osteoporosis is not improving and after a dexa scan my doctor wants me to go on a drug. Tried one before and experienced a REALLY bad reaction. It was Ibandronate Sodium. Don't know what "family" it's in. Having horrible pain when lying down.

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Hello @miche. Your message caught my attention because I have recently encountered osteopenia and osteoporosis symptoms in my family, and I have a whole lot to learn about them, their diagnosis, and their treatment. I found it interesting that your doctors are endocrinologists while mine is an immunologist. Were you referred to the former? Have you sought treatment from the latter? I also was interested in your linking immune B-cells to the loss of calcium from your bones. I've been under the impression that B-cells are produced in the bone marrow rather than the calcium-infused bone itself. As one source of medical information said recently, "B- and T-cells are blood components produced in haematopoiesis. All cellular blood components are derived from haematopoietic stem cells. In a healthy adult person, approximately 10¹¹–10¹² (billions) of new blood cells are produced daily in order to maintain steady state levels in the peripheral circulation."

Your concern about calcium matches my own for reasons of my kidneys, my heart, and genetic arteriosclerosis as well as osteoporosis. My medical team has focused on the calcium control provided by the parathyroid gland and check that often in my regular lab tests. Is your parathyroid involved in your calcium deficiencies? As to my kidneys, due to a genetic fault, they extract sodium and calcium ions from urine as it leaves my kidneys and returns them to my blood, but fails to reclaim potassium, and that shortage of potassium has led to severe hypertension. So you can see how intensely interested I have become in the subject matter on which you commented, and I'd be grateful for any comments or insights you may wish to share with me.

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@mohavegal

Hello, I'm new to this group. My osteoporosis is not improving and after a dexa scan my doctor wants me to go on a drug. Tried one before and experienced a REALLY bad reaction. It was Ibandronate Sodium. Don't know what "family" it's in. Having horrible pain when lying down.

Jump to this post

@jaleen, i like your attitude! Why do so few doctors treat the whole patient or even the whole body? What makes Mayo so successful is the "grand rounds" approach to treating patients--many docs weighing in at once, because we are SYSTEMS not just SYMPTOMS. I think your point about strengthening the skeletal musculature is very important...if your muscles around the bones are strong, isn't there a protective and proactive benefit there? Glad we had this chat. i'm going to start in on the strength training with gusto this year and insist on a second scan (I feel there must be an error in the first) and just live my damn life drug free as long as I can. i cut my blood pressure medicine dose in half already this year, so there is much to be said about holistic approach to just owning your body and remembering we are animals--that means we should be able to run, jump, move, dart, eat when you're hungry, stop when you're not, etc.

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@mohavegal

Hello, I'm new to this group. My osteoporosis is not improving and after a dexa scan my doctor wants me to go on a drug. Tried one before and experienced a REALLY bad reaction. It was Ibandronate Sodium. Don't know what "family" it's in. Having horrible pain when lying down.

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Im Venkatesan 55. I have been suffering from Osteoporosis for the past many years. C4 &C5 which was the first problem started. Then followed nervous problems, Small Vessel Ischemic disease, ulnar neuropathy, brain shrinkage etc. Im taking treatement for all the diseases except Osteoporosis. Kindly advice medicines.

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@mohavegal

Hello, I'm new to this group. My osteoporosis is not improving and after a dexa scan my doctor wants me to go on a drug. Tried one before and experienced a REALLY bad reaction. It was Ibandronate Sodium. Don't know what "family" it's in. Having horrible pain when lying down.

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WIsh I could help @venki, but it's too risky for me to make suggestions, given the range of conditions for which you're already receiving medications -- and its too risky for you to rely on anything I might suggest. Your list of conditions suggests issues of your heart, spinal cord, and peripheral nerves as well as your skeleton. I think an expert trusted medical team is your best source of diagnosis and advice as to which drug to consider as treatment for osteoporosis and not undermining your other medications. Do you have access to a top medical service in your community?

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@mohavegal

Hello, I'm new to this group. My osteoporosis is not improving and after a dexa scan my doctor wants me to go on a drug. Tried one before and experienced a REALLY bad reaction. It was Ibandronate Sodium. Don't know what "family" it's in. Having horrible pain when lying down.

Jump to this post

I'll agree with predictable 100%...after much research. I was taken off Actonel 3 yrs ago due to widespread tormenting rashes. Now Drs insist I needed to start up again since I'm high risk for fractures now. So it's been 6 mos, and constant rash, scalp itch, worsened hip and back pain. Along with those pleasant symptoms I started getting sweats 24/7. ..im going off, and doing the natural route. Taking good supplements, calcium citrate, and making a home made bone marrow broth..
To name a few. Trying to walk 30 mins, but it's causing me more pain. I'll continue helping myself, and wait for this med to flush out.

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