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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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@spreels2
Good time to move into research mode on current treatments for Osteoporosis if you move in that direction. You may have already done this. I'll cross my fingers that you remain in osteopenia.
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4 Reactions@broken13
Hi,
Just wondering what a “booster round” of Teriparatide is. I did reasonably well on Forteo about seven years ago and now my numbers are down again and I had a traumatic fracture. One suggestion from endo was retrial with Forteo (or its generic). I like the idea because I’ve taken it before and had no issues with it. I also know the black box warning and 2 year limit has been changed. I took it for two years, and my endo has no qualms in my taking it for another two years. Haven’t seen too many people that take a second round of Forteo. Evenity makes me a little nervous. So just curious what a booster with generic Forteo would be. On Forteo, the first year I had basically no change, and positive changes were in the the second year.
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1 ReactionAnother great info source is
OsteoBoston. They have a YouTube channel.
Sounds like you are in the same position I was. I called it a booster round because I took Forteo in 2016 for two years and it was recommended again now, as my numbers had slight decline, but are baseline low to start with. So I am currently doing the bio identical brand Teriparatide because it is cheaper, but basically the same thing (so I'm told). They only prescribed it for 18 months though. I did Raloxifene as maintenance after Forteo and will return to that. Did you do anything after Forteo the first time? I am very reluctant to do Evenity as it is made by Prolia and I had severe reaction to that. Also, from what I am reading, it does not hold its gains as well as Forteo.
@maomac “ I personally think the healthcare and drug industries are just instilling fear in us. I realize we all have different underlying issues and meds may be the right way to go for some. However, I think we are all getting put in the same boat unnecessarily.”
Really well said. So many of us feel this exact same way. Thank you.🙏🏼
@broken13 You mentioned you starting fracturing -- can you explain how the fractures came about? From a fall, lifting, or just daily activity? My spine score two years ago was -4.0 and I'm not taking any meds. Forteo and Tymlos are not an option because I have parathyroid issues. I don't want Evenity and read that bisphosphonates offer minimal benefit for fracture prevention. Thanks.
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2 Reactions@daisy17
What are your objections to evenity?
@rudysmom
Dear Rudysmom,
The most important thing to do, is educate yourself and build a team that supports you .
Please read Great Bones by Dr McCormick - it is an insightful and hopeful reference for osteo. At times it can be detailed but stick with it. You must began to understand the underlying factors that contribute to this disease and approach from a whole body health veiwpoint. I have 3 endos, a fabulous PCP, a bone consultat and, a bone PT ( and I went to a therapist for a while becasue I was so fearful) . Margaet MartinPT is online and has fabulous excerecises and prgrams for strenght. God guide you to what you need and send healing light. Create a vision for you life. Be hopeful.
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3 Reactions@gravity3 Just that it's so new on the market. Plus it must be followed by a bisphosphonate, and I don't like the side effects associated with those drugs. Also, it's not covered by my insurance and is very expensive. I think I have a $5000 cap on out-of-pocket drugs, so that would be my yearly cost.
@dmshope “Create a vision for your life.”
I really needed to hear this today. Thank you. 🙏🏼 The anxiety that can be so gripping with this condition can overwhelm. I know first-hand.
Lovely advice, truly. 💐