Mayo Clinic Connect
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. 🙂
Liked by Mamacita, Volunteer Mentor, Leonard Holloway
I, too, am interested in treatments for osteoporosis at a younger (50) age; however, postmenopausal. I found Dr. Lani’s Bone Health Guide book helpful. I’m wary of beginning medical treatments (Forteo for 18-24 months and then a bisphosphonate for 5-7 years) based on one BMD scan.
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What great news @arthritichands. Thanks for sharing it.
I bet @lesleighjarrett would appreciate hearing about your experience with the Miacalcin Nasal Spray in particular. She was inquiring about it on this thread https://connect.mayoclinic.org/discussion/calcitoinin-salmon-nasal-spray-for-osteoporosis/
You must be pleased with the results. And remember regular exercise doesn’t have to be of olympic quality. Every little bit helps.
I love this YouTube video from Dr. Mike Evans called “Let’s Make our Day Harder”
It talks about the little things we can do in our daily habits to keep us moving. I especially like his reference to the parking spot further from the door reserved for those of us who want to live a little longer. I hope you like it too.
Sounds like you are going down the right road, happy for you. I have 2 more years to go on Altevia so looks like I can then use something else. I would like to try the Reclast. Thanks for the info
I am new to the group.
An intro: I am almost 71 and have osteoporosis, Parkinson’s (presumed Agent Orange – I am in that group), hypoglycemia and a few other conditions but consider myself relatively healthy. PMA. I actually worry more short term about the osteo as that could make a major life change suddenly as opposed to the long-term PD. I have been on Fosamax and calcium for 4 years or so and score 2.5 lumbar, 1.8 necks and 1.1 femurs. I do 2 miles on the treadmill and weight machines 3 days a week. My dad had bad bones too, but never broke one so I am “cautiously optimistic” but concerned about long-term Fosamax use.
Liked by Gail, Alumna Mentor
Hi – I have had 6 breaks in my lifetime. I am 76. I am on Actonel once a week and do endurance weight classes. So far, my osteoporosis has never advanced and I am told to continue with what I am doing. I guess whatever works. I also have a lung disease that cannot be cured (IPF) but I am still functioning rather well without all the medication they want to give me.
Hi @ggopher, and welcome to the Osteoporosis discussion! I’m glad you joined this conversation. @susandockter, @jmbjar and @mohavegal as well as other members participating, please join me in welcoming @ggopher to the group.
@ggopher, welcome to the group and thanks for laying out your concerns in clear detail. I was poked by your mention of “long-term Fosamax use,” which faced my wife until two years ago after several years of Fosamax use for osteopenia. Her primary physician agreed to drop Fosamax after the FDA raised public warnings about several possible side-effects. Here is a link to an FDA publication in December 2013: http://www.fda.gov/downloads/Drugs/DrugSafety/UCM241519.pdf.
My wife’s doctor was impressed by the FDA finding that growth of new bone is stunted after several years of Fosamax treatment, possibly leading to fractures. Her calcium supplements (with Vitamin D) have continued to this day, and her heavy physical workout regimen stopped her osteopenia in its tracks. It may have done the same for you!
Can you keep us posted on your progress in managing your situation? It would be most helpful to us all.
Liked by Colleen Young, Connect Director
Hi Ggopher! Welcome to the group! There are lots of ideas and perspectives here. You can get a lot of information to research and take back to your Dr’s. I am surprised by your being on fosamax for so long when it seems like your bones are not that far along the path to being strong. Are those numbers from a recent scan? My mom was in a similar situation with both Parkinson’s and osteoporosis and unfortunately fell doing normal light house work, broke her hip, and never walked again. Definitely your weight lifting and exercise will help your balance to keep you from falling, but from what I understand as a patient, may not be enough. Parkinson’s and balance are definitely issues that go together. Maybe the info in this group will help you evaluate your situation and ask new questions that might give you more options. We each are so different! Keep us posted and good luck.
I have my next Dr (well, PA) appt in a couple weeks and I think it is time for my next bone scan so I’ll see my new scores and let y’all know. I’ll bring up the Fosamax issue because I had heard the same about side effects. Last scan was 12_18 months ago. Balance is still good but not great and a concern for the future so I stay off ladders and the like. How heavy a workout regimen for your wife? My PA told me to stay at 10 pounds but I can’t see that helping so I do 30 reps of 30# and up depending on the joint/muscle group but I don’t strain at all, just go for reps.
@ggopher, I guess I used the wrong adjective when I wrote of my wife’s “heavy” physical workout regimen. Maybe I should have called it “rigorous” or “habitual!” She’s in our home gym every morning about 5:30 for an hour at least. Main equipment she uses are treadmill, cycle, and universal exercise machine which she uses to pull 15 pounds per arm and 25 pounds per leg. As you know from your own regimen, it’s great for extending her days. Just read a newspaper article that gives physical workouts high marks for lifting mood and outlook and overcomes ADHD habits! All of that and rebuilding bones too! Such a deal!
I understood heavy that way, I was just curious about the weight. A deal indeed. Thanks.
Hi, @inspiration. Glad to interact with you today, because you undoubtedly have a lot to share with us, given how well you are managing your osteoporosis. Taking Actonel once a week and backing that up with endurance/weight exercises looks like an excellent regimen for you. Do you know others with similar therapy and exercise? Do you focus on calcium levels in your blood? How about vitamin D intake?
Could you share with us some of the other medications “they want to give” you? Who are “they?” Are these meds mainly for your bones or for your pulmonary fibrosis?
Does your lung disease limit your physical activity somewhat? How do you know when to slow down or ease up? Have you found any encouraging information on the cause of your IPF, or is its origin still a mystery (idiopathic)?
I’m a little older than you and have no current bone problems I know of. Three years ago, I thought I had lower spine degeneration, but that turned out to be inflammation of my sacroiliac joints with no internal bone damage. However, calcium deficiency may have interfered with my kidney functions and related hypertension.
My interest in osteoporosis comes from my wife’s experiences. Since her 70th birthday in 2008, she has been osteopenic (on the road to osteoporosis), but seems to have stalled it with a calcium supplement enriched with vitamin D. Her 6-year affair with daily dosages of Fosamax (similar to your Actonel) was halted two years ago on advice of the FDA. She replaced it with daily one-hour workouts every morning but Sunday in our home gym. Do you think I ought to join her at least once in a while?
I take 1000 mg of Vitamin D and no extra calcium but I drink a lot of milk. My respirologist wants to give me medication for my IPF (Esbriet). Apparently that is the latest on the market. My physical activity is limited when walking or going up stairs. I would have to take 270 pills/month and have my blood tested each month as it can affect your liver. This scares me. It is covered by OHIP – I would pay $3,000 and OHIP would pay $57,000 but I am still reluctant. Everybody should exercise with limitations of course. Yes, join her.
Joan @inspiration, we appreciate your sharing this added information, as well as your steady confidence in managing your circumstances. It’s easy to understand your apprehensions about taking on a heavy new medication regimen — not just a new drug, but its large dosage, required laboratory tracking, and possible affects on your liver. That’s a lot to ask of you. Do you think this calls for a second opinion — and maybe a third — from the best medical specialists you can find and afford? I get the impression that you are on top of your osteoporosis problem and don’t feel a great urgency to confront your pulmonary limitation, but want to make steady progress in both. Am I on the right track?
Yes you are on the right track. I am petrified about taking such strong medication. I might mention to my doctor about a 2nd opinion. I am very intimidated by him. As you know, in Canada we don’t pay for a doctor – it’s just the wait period that is very long. Thanks for your interest.
Has anyone received their 1st BMD scan with a low t-score, like -3.1 in the spine, and been prescribed Forteo? I’m 50 and a little freaked out as I thought I doing a baseline BMD scan. I have no underlying conditions that can explain the extremely low score. Family history of estrogen-receptive cancer puts HRT out of the question. I would like to wait a year, increase calcium/vit D/exercise, and get another scan. Thoughts?
I joined the group today because i wanted to find out about what other people are going thru with osteoporosis. My doctor also wanted me to go on medication, but i came across a book called SaveOurBones by Vivian Goldschmidt. I wanted to see if i could better results with an improved diet. I did increase my veggies, almond milk, calcium, but i was challenging
trying to follow an alkalizing vs. acidifying diet. I did not want to take those bisphosphonates. I have a sensitive stomach.
The doctor gave me Vitamin D and Calcium (but get the calcium from food) My vit. D level was 11 very low. Took 50,000 units of Vit. D. once a week. The thought of not being able to walk is getting to scary.
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