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. 🙂
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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.
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I understood heavy that way, I was just curious about the weight. A deal indeed. Thanks.
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, @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.
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.
My dr wants me to try Prolia as well. Haven’t started yet because I had to get some dental first. Have you started it? My only concern is the necrosis of the jaw. Not sure what to do.
I have not tried any of the bisphosphonates…too scary for me. At one time my endocronologist asked if
i needed dental work, that was a clue to me not to try these meds.
My rheumatologist advised me to take Atelvia, but i’m so afraid to start. He mentioned to get calcium from
food rather than tablets. You mentioned you have not had any bad side effects, thats encouraging for me
to hear. I might have to go back and see him to get a script for Atelvia.
Good decision, @caress. The FDA reports that Fosmax and other bisphosphonates don’t rebuild bone, but only prevent it from degrading. Another therapy is indicated, and a second opinion may be needed to find it.
@caress and all, if you’re looking for a physician to treat osteoporosis — or give you a second opinion on your treatment plan — consider the recommendation of the National Institute of Arthritis and Musculoskeletal and Skin Diseases, a division of the National Institutes of Health. Their web page should be helpful in your search: http://www.niams.nih.gov/Health_Info/Bone/Osteoporosis/find_doctor.asp.
Has your Dr. Talked about a different class of drugs? If the normal ones bother a patient there are other kinds of drugs people can take, like Proleia. Don’t give up unless your Dr. Recommends you do. Your ability to walk is on the line.
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