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Newly diagnosed osteoporosis and have cried every day this week
I’m 60 years old and 2 years ago, was diagnosed with osteopenia. My Dr (Gynecologist) put me on Fosamax. I lasted 3 weeks, I had severe pain in my lower right back. At first I thought it was my sciatic nerve, but when I couldn’t roll over in bed, I realized that wasn’t the issue. Dr told me to stop taking the medication, to increase my calcium to 1200 to 1400 mg a day and get some exercise. I started taking a calcium supplement with vitamin D, increased my calcium, but didn’t increase my exercise enough, obviously.
When he called with my results I told him I had already read them and I have been crying all weekend. He asked why I was crying. I said because I feel like my fate has been handed to me, that I’m going to break a bone not heal, and I’m going to die. His response was oh. My mother died at the age of 84 from a broken hip and when I read those results, I had a flashback to her dying alone at night in a nursing home and that would be soon be me. He proceeded to talk to me about two different medications; Evista and Prolia. I had already joined the support group and have been reading many discussions on types of medication‘s. He never once mentioned that Prolia would be a lifelong commitment. He just gave me a brief overview of both of them, and asked me which one I wanted to start taking I told him I wanted to see an endocrinologist. He seem to be kind of offended. I don’t care. I was kind of offended at his lack of empathy and lack of knowledge on those 2 meds. I would love to be able to get my numbers back to at least osteopenia range without medication but I don’t think that’s realistic. The side effects of the meds also scare the heck out of me. I have called two different endocrinologist to make appointments, but waiting for doctor office to send the referrals. I want to have options.
A month ago I started taking a yoga class two times a week and also a Kettlebell class one day a week. I also received a weighted vest at Christmas and just started wearing it this week and use it during my breaks at work. Too bad I didn’t do this two years ago.
I don’t understand my results other than they’re bad. My T score of L1: -2.7, L2: -3.3, L3: -2.9, L4: -2.3, L1-L4: -2.7 I don’t understand the total number and it says look at the lowest score which is -3.3 so I guess I have severe osteoporosis it’s all so confusing. I just can’t get out of my head that life as I know is over. Sorry this was so long, have no one to talk to about this.
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@wews If the T-score is around -2.5, there's an argument for trying other methods before starting on meds. Dr. McCormick ("Great Bones"), often cited here, is in that camp. Once you get below -3.0, then you're likely going to be better off rebuilding bone density with meds. Someone with a -3.5, for example, can't spend a year trying other methods only to find that things got worse. As Dr. McCormick says, the meds buy you time to get your bone density back to a reasonable level before you determine what to do next.
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1 Reaction@broken13 Thanks for your reply. Didn’t know that about Evenity. Sorry you’ve been through so much but good to hear Forteo showed improvement in measurable areas. Wishing you the best.
@sstopalian: My sister-in-law's nurse practitioner, for a general practice, is the one who oversees her Prolia injections every 6 months. Recently I overheard a conversation she was having with her brother (my husband) on speaker phone whereby she said she needed to have a tooth pulled. When I sent a text afterward asking her when she last had a Prolia injection she said she had not been told that there is a time period you need to wait after getting an injection before having a tooth pulled. (At least 4 months and preferably 5, I've been told.) Thank God her dentist knew told her no future injections for at least 6 weeks. I agree that for osteoporosis one should be seeing a specialist. Some women are apparently even treated by their gynecologist. A friend of mine was seeing a rheumatologist for her osteoporosis treatment and when she transferred to Stanford the endocrinologist asked, "Why were you seeing a rheumatologist?"
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1 Reaction@hipsalve Here is a link to a doctor with some good things to say about Evenity treatment. https://melioguide.us1.list-manage.com/track/click
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2 Reactions@mkoch Your reply is making me want to switch from my second rheumatologist to an endocrinologist now. I’m glad you overheard that conversation, and I hope your sister-in-law is doing well all around.
Long story which I won't go into here but I was recently diagnosed with severe osteoporosis in the spine. My rheumatologist told me that I will NOT be able to build bone with just supplements nor even with certain meds. I need the big guns now, so she recommended Evenity.
She said if my osteoporosis was "milder", her treatment decision would be different. So I started Evenity.
There are SO many issues involved with drug selection (or not). In my case, there was a rapid severe deterioration in just 2 years. I'm being tested for causes of that. On the other hand, a friend of mine has only mild osteoporosis and was put on 1500 mg of calcium and has been "stable" for a few years now. But there are many issue with this. Perhaps my friend has no family history of fractures. My mother had 4 fractures, one in her spine. My friend also doesn't have the small frame/low BMI that is a risk factor. You have to look at the total picture. For me, there was a real urgency to improve bone density. I've already been on supplements for years. I tried oral osteoporosis meds which I didn't tolerate. I exercise and do weights.
My mistake was not seeing a rheumatologist 2 years ago after I couldn't tolerate the oral medication. I went off it and only took calcium after that. I told my family doctor that I would wait for my next Dexa to see what we should do next. Well, the Dexa showed severe deterioration.
From what I've read, supplementation alone isn't enough to build bone. It only helps maintain what's already there.
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2 ReactionsProlia is not necessarily a lifelong commitment and your life as you know it now is not necessarily over. Sounds like you are doing your own research. That's great.
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2 ReactionsI am going to try OsteoStrong when it opens in April. It's supposed to help reverse osteoporosis doing it just once a week. I don't want to go on medication. Has anyone in this group tried it? Don't give up. I'm going to fight it!
@pbradley1954
There are many comments and discussions about osteostrong. Go to the main category labeled Osteoporosis and check the subheadings or do a search.
I understand what you are going through. My mom, at 89, went to to hospital because her hip hurt so bad that she couldn't walk. She never came back home.
So, imagine how I felt when my right hip began to hurt.
I have osteoporosis and have had several treatments non replace the bone loss. It just strengthens it. 3 yrs ago I fell at the airport and broke my knee you sure done want that pain.
Last year I had a fusion neck surgery. Frant and back. Followed by L2 - L5 & S1 lumbar fusion surgery of which I am still recovering from but, so glad I had it. You just have to keep going the best you can. Do your research on everything. Maybe a little something for anxiety😁
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