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STOP! Don't do this if you have osteoporosis
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.
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shail,
Do some research before you start drug treatment. This is a complicated disease with complicated treatment options.
Two experts in the field are Dr Lani Simpson and Dr Keith McCormick. They both have books, websites, do consultations, etc.
Sadly, I would also caution
you to not trust your doctor to be educated about osteoporosis unless he/she IS educated about it.
The first doctor that attempted to treat me for osteoporosis was my gynecologist. She was uneducated about it.
Later, I had an endocrinologist who was treating a lot of osteoporosis patients, but who was uneducated about it. I attempted to give him Dr McCormick’s book, but he refused to take it.
Now, I see a rheumatologist who is on top of treatments.
I have been fortunate with treatment. I had. Year of Evenity followed by an infusion of Reclast. I went from osteoporosis to osteopenia. Also, had no side effects.
At 73, I still have to figure out every next step.
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7 ReactionsLove the last line! Although retired. It seem like I have a job trying to figure this out step by step. I am thankful for all of the people here who are sharing so much of value. Dont know if I would have the energy or will without you all. Thanks
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3 Reactionsthankyou susan for taking the time to explain so much in detail about your personal experience. I had no inkling about osteoporosis treatment being so complicated. I will definitely look up both your suggestions. I'm so happy to hear that your osteoporosis has reverted into osteopenia. wishing you further safe treatment and strong bones.
A relative in her 50's chided me for trying to find out more about the treatment. she said that it would only confuse me. she has unquestioningly started teriparatide give for 4 months by her doctor as she has osteopenia T score of 2.5.
Her doctor said he would give another medication after a year. she assumed that once her bone density increases she will require no further treatment. I don't know if that applies for osteopenia treatment.
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1 ReactionIt’s so confusing, isn’t it, all the treatment options and like was said previously, the timing of the different meds is vital. If you can find a doctor in your area that specializes in BONE health, not just any old PCP or endocrinologist, that’s where you should get better advice. Most of these health professionals have not educated themselves enough about the complexities of osteoporosis treatment and they really shouldn’t be prescribing medications that are not right for your particular case.
You can also begin to learn more yourself and how to ask the right questions by reading such books as “Great Bones” by Dr Keith McCormick. I wish you health and wisdom!!
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4 Reactionsthankyou, yes i'm ordering Great Bones immediately! my Orthopedic just prescribed Prolia without explaining anything. I questioned him the rebound effect which he dismissed..I wish they would take some time explain things more to a patient who is concerned. they are used to being listened to blindly and are intolerant of questioning clients. I feel so embarrassed asking them questions as they sort of roll up their eyes about people like us who try to find out more thru the net.
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1 ReactionBurpees and cartwheels!!
Shail,
Osteoporosis isn’t any doctor’s specialty. The endocrinologists and to a lesser degree, rheumatologists have started treating it, but it’s not their primary concern.
In the beginning, it was gynecologists. This was because a pharmaceutical company had invented a drug for it and thought that marketing it through gynecologists would be the most profitable. My gynecologist said,”You have osteoporosis, I want you to take Boniva.” There was zero information at the time.
This was 2005. I received this news right after Hurricane Katrina and already had my hands full as we live/lived in New Orleans. So, I put osteoporosis on a back burner for a long time. This was a mistake, but I probably couldn’t have taken the oral drugs anyway.
I have been fortunate with my drug treatment, but not everyone has an easy road.
Step one: educate. I’m kinda repeating myself now. Will stop.
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3 ReactionsWow - some reply !
Thankyou once again! Hearing dr Keith mc cormick has given hope and direction. I’m so grateful to u and all those who have given advice.. I’m feeling less terrified and hopeless
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1 ReactionWhy do you take a lesser dose of Tymlos? I had taken forteo about 7 years ago for a year and a half after a shattering of my elbow because of osteoporosis. Unfortunately after the hour and a half I had some minor hearing loss. But otherwise the forteo seem to be fine for me but I don't want to have any more hearing loss. Any comments are appreciated I've just had such problems with so many of the drugs