STOP! Don't do this if you have osteoporosis

Posted by isabelle7 @isabelle7, Jul 7 8:35pm

I am starting this thread hoping people will post things they've done that they have regretted, for one reason or another, when suffering from osteoporosis.

I'm going to start the conversation with a list of things we've learned already, and we are newbies!

1. Lift objects heavier than recommended by your physician (for my husband, that means nothing heavier than 5 pounds right now, with 3 fractures).

2. Don't bend at the waist! He got a fracture bending to empty the dishwasher.

3. Be cautious when driving - avoid rough roads, bumps, and go very slow over speed bumps.

4. We had planned to go on a boating tour (on a commercial fishing boat) on the ocean. After seeing a boat rocking and bouncing over choppy water we decided not to go.

5. Do not slouch when sitting in a chair or couch. If you're going to rest for any period of time on a couch elevate your legs (per our physical therapist).

6. Do not try any exercises until you have cleared it with your doctor, especially before your doctor confirms your fracture is stable.)

Please add to the discussion. I think this could be useful to people, especially people new to this.

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

I had 3 Reclast infusions over 4.5 years. My previous osteoporosis is now osteopenia. Reclast does have potential side effects, so good to consider those. I have always been very active, weights, hiking, biking (not as good for osteo, but fun), gardening, and other. I take calcium/magnesium, Omega 3, and other recommended supplements. BTW, I there are a lot of very expensive osteo supplements, some that are promoted as cures. FDA doesn't regulate supplements so we have to check ingredients to see if they are safe for us, or cheaper to get in other pills/drops.

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@kayabbott

I had 3 Reclast infusions over 4.5 years. My previous osteoporosis is now osteopenia. Reclast does have potential side effects, so good to consider those. I have always been very active, weights, hiking, biking (not as good for osteo, but fun), gardening, and other. I take calcium/magnesium, Omega 3, and other recommended supplements. BTW, I there are a lot of very expensive osteo supplements, some that are promoted as cures. FDA doesn't regulate supplements so we have to check ingredients to see if they are safe for us, or cheaper to get in other pills/drops.

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Hi @kayabbott it is great to hear your success story with Reclast, thank you very much for sharing! Does your Dexa scan results include TBS information? If so, do you mind sharing how much was your TBS improvements? Thanks a lot!

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@mayblin

Hi @kayabbott it is great to hear your success story with Reclast, thank you very much for sharing! Does your Dexa scan results include TBS information? If so, do you mind sharing how much was your TBS improvements? Thanks a lot!

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No change for my spine, but hips improvement were 3.3 and 7.2%. My spine is borderline at my age (70) for osteoporosis, but other TBS scores are 1.3 to 2.3. I lift weights partly to build muscles to support my spine and other bones (so far I haven't shrunk). Reclast infusions work for more than a year https://pmc.ncbi.nlm.nih.gov/articles/PMC3427916/ .

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@kayabbott

No change for my spine, but hips improvement were 3.3 and 7.2%. My spine is borderline at my age (70) for osteoporosis, but other TBS scores are 1.3 to 2.3. I lift weights partly to build muscles to support my spine and other bones (so far I haven't shrunk). Reclast infusions work for more than a year https://pmc.ncbi.nlm.nih.gov/articles/PMC3427916/ .

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Thank you for your reply and info! Your improvements in hip areas are very nice!

“but other TBS scores are 1.3-2.3”: do you mean T scores (in negative) for other areas? TBS (trabecular bone score) score is calculated by an add-on software to the Dexa machine for a rough evaluation of microarchetecture of the bones. The scores run between 1.2-1.4 for most people with osteoporosis or osteopenia.

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Wow Isabelle7, I think you and I are the same person! (Or is it your husband with the osteoporosis?)
I second EVERYTHING you stated on what not to do when you have osteoporosis. I also sustained three fractures this year, had one in 2016 coughing deeply w bronchitis, the others from doing basically just household chores. But the 3 this year are from stopping Prolia a year and a half ago, and going back on inbandromate orally. Bad idea!
My new doctor says all of those things too, and absolutely no exercise or PT until I heal more. I was feeling guilty about doing nothing but it helped when he said “you have the rest of your life to exercise”…
I am 67 yo and started Tymlos recently. Praying it helps!

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@mayblin

Thank you for your reply and info! Your improvements in hip areas are very nice!

“but other TBS scores are 1.3-2.3”: do you mean T scores (in negative) for other areas? TBS (trabecular bone score) score is calculated by an add-on software to the Dexa machine for a rough evaluation of microarchetecture of the bones. The scores run between 1.2-1.4 for most people with osteoporosis or osteopenia.

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Yes, my T scores range from -1.3 to -2.3 for my various parts, such as femoral neck, hips, and others. They didn't scan my forearm this time because it was previously well within the osteopenia range.

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This is a wonderful idea. I lived so long, never thinking about my bones or what I should have been doing to protect them. I could have shaved a ton from my present load of things to consider had I researched the foods I did and did not eat. If I had treated my bones with respect, what a different position I may have been in at this time. Thanks

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@doreenc

Meri8181, Which brand red algae calcium are you taking? Also regarding magnesium - how much do you take daily and also which brand? Do you take any other supplements like a multi, K?

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@doreenc- note……… I thought of taking a calcium supplement with Strontium , but my cardiologist said not to since I am on a blood thinner.

Here is what I am taking.
Hope you can match up the front and back of supplements.

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@kayabbott

No change for my spine, but hips improvement were 3.3 and 7.2%. My spine is borderline at my age (70) for osteoporosis, but other TBS scores are 1.3 to 2.3. I lift weights partly to build muscles to support my spine and other bones (so far I haven't shrunk). Reclast infusions work for more than a year https://pmc.ncbi.nlm.nih.gov/articles/PMC3427916/ .

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Actually my spine is -1.1, so barely in osteopenia. Normal for a post-menopausal women is a T score of -1 and less. Osteopenia (oops, almost typed osteopenis, which sounds quite painful) T score is -1 to -2.5.

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@isabelle7

@loriesco

Thank you for your list!!

I agree with getting a great doctor and not settling. It took us a while and making changes with doctors we didn't feel were competent. When they say they take care of patients with osteoporosis and have never heard of Forteo or Evenity it's time for a new doctor. In my opinion. The best doctor we found for osteoporosis is an endocrinologist. And we have a rheumatologist for his other conditions. We also have a physical therapist to help us navigate the osteoporosis. It's my husband who has it, not me.

I've never called the pharmaceutical companies but that's a good idea.

Two websites our doctors agree provide good, accurate information are Mayo Clinic and Cleveland Clinic. There are other good ones, some from other countries I've found useful.

I find lots and lots of good information online. You just have to be sure it's from a good reliable source. My schedule doesn't allow me much time to go to the library but that's another good place to go. I've bought many books off Amazon too.

Your attitude will go a long way to help you heal. Sometimes it's hard and it's depressing but the most important thing is to keep a positive outlook. I believe in the mind-body connection.

And like you I am a firm believer in sharing what you learn. I love this site for that.

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Good luck with calling the pharma folks about their products. I called the makers of Xarelto last week to find out if my 10mg scrip for Factor 5 genetic clotting would work with turmeric, taurine, theanine and berberine and finally got through to a person "who can help you." She suggested I ask my doctor. I bother my wonderful hematologist all the time with these annoying questions and I was trying to spare her. I asked this adviser why my doctor would know more about interactions with their drug than they, the manufacturers and she couldn't answer.
About 6 years ago I lost an eye after glaucoma surgery to implant a tube. I had been told by two hematologists that I would need to be off Xarelto for two days, but I was nervous, so I asked the company itself - and they said follow the doctor's advice. I stayed off it for four days. After the surgery the eyewall collapsed and it was only much later I got to the retina specialist who told me all these new-fangled clotting drugs are terrible for eye surgery, and the blood vessels in the eye are both very tiny and weak. I had looked and looked into research and had never found anything about that. He said you need to be off them for 10 days. When I asked why he knew that, he said retina people work with a lot of older people, many of whom are on these drugs, and he's seen it happen to them. I also found out later that Factor 5 makes a particularly hard clot that is really difficult to dissolve. Pharma is not your helpful ally.

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